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Study finds more adverse maternal outcomes in women with disabilities
Women with physical, intellectual, and sensory disabilities had higher risk for almost all pregnancy complications, obstetric interventions, and adverse outcomes, including severe maternal morbidity (SMM) and mortality compared to women without disabilities, according to an analysis of a large, retrospective cohort.
The findings, published in JAMA Network Open (2021;4[12]:e2138414 doi: 10.1001/jamanetworkopen.2021.38414), “may be a direct reflection of the challenges women with all types of disabilities face when accessing and receiving care, which is likely compounded by poorer preconception health,” suggested lead author Jessica L. Gleason, PhD, MPH, and co-authors, all from the Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, Md.
“Women with disabilities have long been ignored in obstetric research and clinical practice,” added Hilary K. Brown, PhD, from the University of Toronto, in an accompanying editorial. “Inclusion of disability indicators needs to be the norm – not the exception – in health administrative data so that these disparities can be regularly tracked and addressed.”
The investigators used data from the Consortium on Safe Labor (CSL), a retrospective cohort of deliveries from 12 U.S. clinical centers between Jan. 2002 and Jan. 2008, to analyze obstetric interventions and adverse maternal outcomes in women with and without disabilities.
The analysis included a total of 223,385 women, mean age 27.6 years, of whom 2,074 (0.9%) had a disability, and 221,311 did not. Among those with disabilities, 1,733 (83.5%) were physical, 91 (4.4%) were intellectual, and 250 (12.1%) were sensory. While almost half (49.4%) of the women were White, 22.5% were Black, 17.5% were Hispanic, and 4.1% were Asian or Pacific Islander.
Outcomes were analyzed with three composite measures:
- Pregnancy-related complications (pregnancy-related hypertensive diseases, gestational diabetes, placental abruption, placenta previa, premature rupture of membranes, preterm PROM);
- All labor, delivery, and postpartum complications (chorioamnionitis, hemorrhage, blood transfusion, thromboembolism, postpartum fever, infection, cardiovascular events, cardiomyopathy, and maternal death);
- SMM only, including severe pre-eclampsia/eclampsia, hemorrhage, thromboembolism, fever, infection, cardiomyopathy, and cardiovascular events during labor and delivery.
After adjustment for covariates, women with disabilities had higher risk of pregnancy-related complications. This included a 48% higher risk of mild pre-eclampsia and double the risk of severe pre-eclampsia/eclampsia. The composite risk of any pregnancy complication was 27% higher for women with physical disabilities, 49% higher for women with intellectual disabilities, and 53% higher for women with sensory disabilities.
The findings were similar for labor, delivery, and postpartum complications, showing women with disabilities had higher risk for a range of obstetrical interventions, including cesarean delivery – both planned and intrapartum (aRR, 1.34). Additionally, women with disabilities were less likely to have a cesarean delivery that was “solely clinically indicated” (aRR, 0.79), and more likely to have a cesarean delivery for “softer” mixed indication (aRR, 1.16), “supporting a possible overuse of cesarean delivery among women with disability,” they suggested.
Women with disabilities also had a higher risk of postpartum hemorrhage (aRR, 1.27), blood transfusion (aRR, 1.64), and maternal mortality (aRR, 11.19), as well as individual markers of severe maternal morbidity, such as cardiovascular events (aRR, 4.02), infection (aRR, 2.69), and venous thromboembolism (aRR, 6.08).
The authors speculate that the increased risks for women with disabilities “may be the result of a combination of independent risk factors, including the higher rate of obstetric intervention via cesarean delivery, under-recognition of women with disabilities as a population with higher-risk pregnancies, and lack of health care practitioner knowledge or comfort in managing pregnancies among women with disabilities.”
Dr. Brown noted in her commentary that there is a need for better education of health care professionals in this area. “Given that 12% of reproductive-aged women have a disability, that pregnancy rates are similar among women with and without disabilities, and that women with disabilities are at elevated risk of a range of adverse maternal outcomes, including severe maternal morbidity and maternal mortality, disability modules should be a mandatory component of education for obstetricians and midwives as well as other obstetrical health care professionals.”
Calling the study “a serious wake-up call,” Monika Mitra, PhD, told this publication that the findings highlight the need for “urgent attention” on improving obstetric care for people with disabilities “with a focus on accessibility and inclusion, changing clinical practice to better serve disabled people, integrating disability-related training for health care practitioners, and developing evidence-based interventions to support people with disabilities during this time.” The associate professor and director of the Lurie Institute for Disability Policy, in Brandeis University, Waltham, Mass. said the risk factors for poor outcomes are present early in pregnancy or even preconception. “We know that disabled women report barriers in accessing health care and receive lower-quality care compared to nondisabled women and are more likely to experience poverty, housing and food insecurity, educational and employment barriers, abuse, chronic health conditions, and mental illness than women without disabilities.”
She noted that the study’s sample of people with disabilities was small, and the measure of disability used was based on ICD-9 codes, which captures only severe disabilities. “As noted in the commentary by [Dr.] Brown, our standard sources of health administrative data do not give us the full picture on disability, and we need other, more equitable ways of identifying disability based, for example, on self-reports of activity or participation limitations if we are to be able to understand the effects on obstetric outcomes of health and health care disparities and of social determinants of health. Moreover, researchers have generally not yet begun to incorporate knowledge of the experiences of transgender people during pregnancy, which will impact our measures and study of obstetric outcomes among people with disabilities as well as the language we use.”
The study was supported by the Intramural Research Program of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). The study authors and Dr. Brown reported no conflicts of interest. Dr. Mitra receives funding from the NICHD and the National Institute on Disability, Independent Living for research on pregnancy outcomes among people with disabilities.
Women with physical, intellectual, and sensory disabilities had higher risk for almost all pregnancy complications, obstetric interventions, and adverse outcomes, including severe maternal morbidity (SMM) and mortality compared to women without disabilities, according to an analysis of a large, retrospective cohort.
The findings, published in JAMA Network Open (2021;4[12]:e2138414 doi: 10.1001/jamanetworkopen.2021.38414), “may be a direct reflection of the challenges women with all types of disabilities face when accessing and receiving care, which is likely compounded by poorer preconception health,” suggested lead author Jessica L. Gleason, PhD, MPH, and co-authors, all from the Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, Md.
“Women with disabilities have long been ignored in obstetric research and clinical practice,” added Hilary K. Brown, PhD, from the University of Toronto, in an accompanying editorial. “Inclusion of disability indicators needs to be the norm – not the exception – in health administrative data so that these disparities can be regularly tracked and addressed.”
The investigators used data from the Consortium on Safe Labor (CSL), a retrospective cohort of deliveries from 12 U.S. clinical centers between Jan. 2002 and Jan. 2008, to analyze obstetric interventions and adverse maternal outcomes in women with and without disabilities.
The analysis included a total of 223,385 women, mean age 27.6 years, of whom 2,074 (0.9%) had a disability, and 221,311 did not. Among those with disabilities, 1,733 (83.5%) were physical, 91 (4.4%) were intellectual, and 250 (12.1%) were sensory. While almost half (49.4%) of the women were White, 22.5% were Black, 17.5% were Hispanic, and 4.1% were Asian or Pacific Islander.
Outcomes were analyzed with three composite measures:
- Pregnancy-related complications (pregnancy-related hypertensive diseases, gestational diabetes, placental abruption, placenta previa, premature rupture of membranes, preterm PROM);
- All labor, delivery, and postpartum complications (chorioamnionitis, hemorrhage, blood transfusion, thromboembolism, postpartum fever, infection, cardiovascular events, cardiomyopathy, and maternal death);
- SMM only, including severe pre-eclampsia/eclampsia, hemorrhage, thromboembolism, fever, infection, cardiomyopathy, and cardiovascular events during labor and delivery.
After adjustment for covariates, women with disabilities had higher risk of pregnancy-related complications. This included a 48% higher risk of mild pre-eclampsia and double the risk of severe pre-eclampsia/eclampsia. The composite risk of any pregnancy complication was 27% higher for women with physical disabilities, 49% higher for women with intellectual disabilities, and 53% higher for women with sensory disabilities.
The findings were similar for labor, delivery, and postpartum complications, showing women with disabilities had higher risk for a range of obstetrical interventions, including cesarean delivery – both planned and intrapartum (aRR, 1.34). Additionally, women with disabilities were less likely to have a cesarean delivery that was “solely clinically indicated” (aRR, 0.79), and more likely to have a cesarean delivery for “softer” mixed indication (aRR, 1.16), “supporting a possible overuse of cesarean delivery among women with disability,” they suggested.
Women with disabilities also had a higher risk of postpartum hemorrhage (aRR, 1.27), blood transfusion (aRR, 1.64), and maternal mortality (aRR, 11.19), as well as individual markers of severe maternal morbidity, such as cardiovascular events (aRR, 4.02), infection (aRR, 2.69), and venous thromboembolism (aRR, 6.08).
The authors speculate that the increased risks for women with disabilities “may be the result of a combination of independent risk factors, including the higher rate of obstetric intervention via cesarean delivery, under-recognition of women with disabilities as a population with higher-risk pregnancies, and lack of health care practitioner knowledge or comfort in managing pregnancies among women with disabilities.”
Dr. Brown noted in her commentary that there is a need for better education of health care professionals in this area. “Given that 12% of reproductive-aged women have a disability, that pregnancy rates are similar among women with and without disabilities, and that women with disabilities are at elevated risk of a range of adverse maternal outcomes, including severe maternal morbidity and maternal mortality, disability modules should be a mandatory component of education for obstetricians and midwives as well as other obstetrical health care professionals.”
Calling the study “a serious wake-up call,” Monika Mitra, PhD, told this publication that the findings highlight the need for “urgent attention” on improving obstetric care for people with disabilities “with a focus on accessibility and inclusion, changing clinical practice to better serve disabled people, integrating disability-related training for health care practitioners, and developing evidence-based interventions to support people with disabilities during this time.” The associate professor and director of the Lurie Institute for Disability Policy, in Brandeis University, Waltham, Mass. said the risk factors for poor outcomes are present early in pregnancy or even preconception. “We know that disabled women report barriers in accessing health care and receive lower-quality care compared to nondisabled women and are more likely to experience poverty, housing and food insecurity, educational and employment barriers, abuse, chronic health conditions, and mental illness than women without disabilities.”
She noted that the study’s sample of people with disabilities was small, and the measure of disability used was based on ICD-9 codes, which captures only severe disabilities. “As noted in the commentary by [Dr.] Brown, our standard sources of health administrative data do not give us the full picture on disability, and we need other, more equitable ways of identifying disability based, for example, on self-reports of activity or participation limitations if we are to be able to understand the effects on obstetric outcomes of health and health care disparities and of social determinants of health. Moreover, researchers have generally not yet begun to incorporate knowledge of the experiences of transgender people during pregnancy, which will impact our measures and study of obstetric outcomes among people with disabilities as well as the language we use.”
The study was supported by the Intramural Research Program of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). The study authors and Dr. Brown reported no conflicts of interest. Dr. Mitra receives funding from the NICHD and the National Institute on Disability, Independent Living for research on pregnancy outcomes among people with disabilities.
Women with physical, intellectual, and sensory disabilities had higher risk for almost all pregnancy complications, obstetric interventions, and adverse outcomes, including severe maternal morbidity (SMM) and mortality compared to women without disabilities, according to an analysis of a large, retrospective cohort.
The findings, published in JAMA Network Open (2021;4[12]:e2138414 doi: 10.1001/jamanetworkopen.2021.38414), “may be a direct reflection of the challenges women with all types of disabilities face when accessing and receiving care, which is likely compounded by poorer preconception health,” suggested lead author Jessica L. Gleason, PhD, MPH, and co-authors, all from the Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, Bethesda, Md.
“Women with disabilities have long been ignored in obstetric research and clinical practice,” added Hilary K. Brown, PhD, from the University of Toronto, in an accompanying editorial. “Inclusion of disability indicators needs to be the norm – not the exception – in health administrative data so that these disparities can be regularly tracked and addressed.”
The investigators used data from the Consortium on Safe Labor (CSL), a retrospective cohort of deliveries from 12 U.S. clinical centers between Jan. 2002 and Jan. 2008, to analyze obstetric interventions and adverse maternal outcomes in women with and without disabilities.
The analysis included a total of 223,385 women, mean age 27.6 years, of whom 2,074 (0.9%) had a disability, and 221,311 did not. Among those with disabilities, 1,733 (83.5%) were physical, 91 (4.4%) were intellectual, and 250 (12.1%) were sensory. While almost half (49.4%) of the women were White, 22.5% were Black, 17.5% were Hispanic, and 4.1% were Asian or Pacific Islander.
Outcomes were analyzed with three composite measures:
- Pregnancy-related complications (pregnancy-related hypertensive diseases, gestational diabetes, placental abruption, placenta previa, premature rupture of membranes, preterm PROM);
- All labor, delivery, and postpartum complications (chorioamnionitis, hemorrhage, blood transfusion, thromboembolism, postpartum fever, infection, cardiovascular events, cardiomyopathy, and maternal death);
- SMM only, including severe pre-eclampsia/eclampsia, hemorrhage, thromboembolism, fever, infection, cardiomyopathy, and cardiovascular events during labor and delivery.
After adjustment for covariates, women with disabilities had higher risk of pregnancy-related complications. This included a 48% higher risk of mild pre-eclampsia and double the risk of severe pre-eclampsia/eclampsia. The composite risk of any pregnancy complication was 27% higher for women with physical disabilities, 49% higher for women with intellectual disabilities, and 53% higher for women with sensory disabilities.
The findings were similar for labor, delivery, and postpartum complications, showing women with disabilities had higher risk for a range of obstetrical interventions, including cesarean delivery – both planned and intrapartum (aRR, 1.34). Additionally, women with disabilities were less likely to have a cesarean delivery that was “solely clinically indicated” (aRR, 0.79), and more likely to have a cesarean delivery for “softer” mixed indication (aRR, 1.16), “supporting a possible overuse of cesarean delivery among women with disability,” they suggested.
Women with disabilities also had a higher risk of postpartum hemorrhage (aRR, 1.27), blood transfusion (aRR, 1.64), and maternal mortality (aRR, 11.19), as well as individual markers of severe maternal morbidity, such as cardiovascular events (aRR, 4.02), infection (aRR, 2.69), and venous thromboembolism (aRR, 6.08).
The authors speculate that the increased risks for women with disabilities “may be the result of a combination of independent risk factors, including the higher rate of obstetric intervention via cesarean delivery, under-recognition of women with disabilities as a population with higher-risk pregnancies, and lack of health care practitioner knowledge or comfort in managing pregnancies among women with disabilities.”
Dr. Brown noted in her commentary that there is a need for better education of health care professionals in this area. “Given that 12% of reproductive-aged women have a disability, that pregnancy rates are similar among women with and without disabilities, and that women with disabilities are at elevated risk of a range of adverse maternal outcomes, including severe maternal morbidity and maternal mortality, disability modules should be a mandatory component of education for obstetricians and midwives as well as other obstetrical health care professionals.”
Calling the study “a serious wake-up call,” Monika Mitra, PhD, told this publication that the findings highlight the need for “urgent attention” on improving obstetric care for people with disabilities “with a focus on accessibility and inclusion, changing clinical practice to better serve disabled people, integrating disability-related training for health care practitioners, and developing evidence-based interventions to support people with disabilities during this time.” The associate professor and director of the Lurie Institute for Disability Policy, in Brandeis University, Waltham, Mass. said the risk factors for poor outcomes are present early in pregnancy or even preconception. “We know that disabled women report barriers in accessing health care and receive lower-quality care compared to nondisabled women and are more likely to experience poverty, housing and food insecurity, educational and employment barriers, abuse, chronic health conditions, and mental illness than women without disabilities.”
She noted that the study’s sample of people with disabilities was small, and the measure of disability used was based on ICD-9 codes, which captures only severe disabilities. “As noted in the commentary by [Dr.] Brown, our standard sources of health administrative data do not give us the full picture on disability, and we need other, more equitable ways of identifying disability based, for example, on self-reports of activity or participation limitations if we are to be able to understand the effects on obstetric outcomes of health and health care disparities and of social determinants of health. Moreover, researchers have generally not yet begun to incorporate knowledge of the experiences of transgender people during pregnancy, which will impact our measures and study of obstetric outcomes among people with disabilities as well as the language we use.”
The study was supported by the Intramural Research Program of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). The study authors and Dr. Brown reported no conflicts of interest. Dr. Mitra receives funding from the NICHD and the National Institute on Disability, Independent Living for research on pregnancy outcomes among people with disabilities.
How does atopic dermatitis present in skin of color?
“We see very heterogenous and broad clinical presentations across the diverse patient populations that we see,” Andrew F. Alexis, MD, MPH, said at the Revolutionizing Atopic Dermatitis symposium. “Some of these differences might be related to population variations in skin barrier function, immunologic factors, genetic factors, and environmental factors, which all interplay to produce variations in the clinical presentation and overall impact of AD. Many nongenetic factors also contribute to differences that we see, including some socioeconomic and other factors that feed into health disparities.”
Dr. Alexis, professor of clinical dermatology at Weill Cornell Medicine, New York, discussed four main clinical features of AD in skin of color.
Erythema is less visible because it is masked by pigment
“There can be some masking of the redness and alteration of that color such that it doesn’t look bright red as it would in the background of lightly pigmented skin,” Dr. Alexis said. “Instead, the [AD lesions] have shades of grayish-red or grayish-brown or reddish-brown. It’s important to recognize this clinical presentation and look carefully and assess the patient – not just visually but with palpation and take into consideration symptomatology so that you don’t fall into the trap of calling an AD lesion postinflammatory hyperpigmentation. It’s also helpful to isolate the islands of normal or nonlesional skin and contrast that with the areas of lesional skin, to get a sense of how active and inflamed the areas are. Palpation really helps to appreciate the elevation of the lesions that are involved.”
Follicular accentuation
Morphological variants common in skin of color include the follicular variant or micropapular variant of AD. “You might just see a collection of papules that are 1-2 mm in size and pruritic and in typical sites of predilection [for] eczema,” he said. Prurigo nodularis–like lesions or prurigo nodularis in association with AD are also seen more frequently in skin of color.
Lichenification
The lichenoid variant of AD is characterized by a violaceous hue and other features that resemble lichen planus and has been reported to be more common in individuals of African descent. A prospective study of about 1,000 patients with AD seen over 2 years at a dermatology clinic in southeastern Nigeria found that 54% of patients had papular lichenoid lesions. In addition, 51% had elevated blood eosinophil counts, especially those with severe disease.
Dr. Alexis added that psoriasiform features have been reported in studies of East Asian populations with AD. These plaques may be more well demarcated and have clinical and histologic features that resemble psoriasis.
Dyspigmentation
One common feature across the spectrum of patients with skin of color “is the risk of longstanding pigmentary sequelae in the form of hyperpigmentation or hypopigmentation,” said Dr. Alexis, who is also vice chair for diversity and inclusion for the department of dermatology at Weill Cornell Medicine. “In very severe longstanding areas with chronic excoriation to the point of breaking of the skin, eroding of the skin, causing permanent damage to the melanocytes, dyspigmentation that resembles vitiligo can be seen. We can also see hypopigmentation as a consequence of topical corticosteroids, particularly those that are class I or class II and are used for prolonged periods of time.”
Dr. Alexis noted that delays in treatment and undertreatment can contribute to a higher risk of pigmentary and other long-term sequelae. “New therapies show promise in improving outcomes in AD patients with skin of color. When it comes to therapeutic responses, there are some post hoc studies that have investigated potential differences in safety and efficacy of the agents that have been recently approved. We clearly need more data to better understand if there are potential racial or ethnic differences.”
Dr. Alexis reported no relevant financial relationships.
Commentary by Lawrence F. Eichenfield, MD
Atopic dermatitis (AD) is highly heterogenous, with tremendous variations in extent, qualities of eczema, symptom complex, and physical presentation. Prior studies have reported disparities of care delivered to racial and ethnic minorities in the United States, as well as higher susceptibility to AD and odds of persistent disease into adulthood from child-onset AD. Recognizing some differences in presentation of AD in patients with skin of color is important as we select our therapeutic interventions, including assessing new treatments being added to our armamentarium. Erythema may be harder to notice in darker skin, but attempting to blanch the skin with pressure can help to assess the color and inflammation. Appreciating lichenoid changes, including papular and “micropapular” AD, and psoriasiform-like thickening in certain patients (reportedly more common in East Asian populations) are important as well. And dyspigmentation is an important aspect of the disease presentation and patient and parental concern, given both hypopigmentaton and hyperpigmentation commonly seen over the course of AD.
Dr. Eichenfield is chief of pediatric and adolescent dermatology at Rady Children's Hospital-San Diego. He is vice chair of the department of dermatology and professor of dermatology and pediatrics at the University of California, San Diego. He disclosed that he has served as an investigator and/or consultant to AbbVie, Lilly, Pfizer, Regeneron, Sanofi-Genzyme, and Verrica.
A version of this article first appeared on Medscape.com.
This article was updated 6/18/22.
“We see very heterogenous and broad clinical presentations across the diverse patient populations that we see,” Andrew F. Alexis, MD, MPH, said at the Revolutionizing Atopic Dermatitis symposium. “Some of these differences might be related to population variations in skin barrier function, immunologic factors, genetic factors, and environmental factors, which all interplay to produce variations in the clinical presentation and overall impact of AD. Many nongenetic factors also contribute to differences that we see, including some socioeconomic and other factors that feed into health disparities.”
Dr. Alexis, professor of clinical dermatology at Weill Cornell Medicine, New York, discussed four main clinical features of AD in skin of color.
Erythema is less visible because it is masked by pigment
“There can be some masking of the redness and alteration of that color such that it doesn’t look bright red as it would in the background of lightly pigmented skin,” Dr. Alexis said. “Instead, the [AD lesions] have shades of grayish-red or grayish-brown or reddish-brown. It’s important to recognize this clinical presentation and look carefully and assess the patient – not just visually but with palpation and take into consideration symptomatology so that you don’t fall into the trap of calling an AD lesion postinflammatory hyperpigmentation. It’s also helpful to isolate the islands of normal or nonlesional skin and contrast that with the areas of lesional skin, to get a sense of how active and inflamed the areas are. Palpation really helps to appreciate the elevation of the lesions that are involved.”
Follicular accentuation
Morphological variants common in skin of color include the follicular variant or micropapular variant of AD. “You might just see a collection of papules that are 1-2 mm in size and pruritic and in typical sites of predilection [for] eczema,” he said. Prurigo nodularis–like lesions or prurigo nodularis in association with AD are also seen more frequently in skin of color.
Lichenification
The lichenoid variant of AD is characterized by a violaceous hue and other features that resemble lichen planus and has been reported to be more common in individuals of African descent. A prospective study of about 1,000 patients with AD seen over 2 years at a dermatology clinic in southeastern Nigeria found that 54% of patients had papular lichenoid lesions. In addition, 51% had elevated blood eosinophil counts, especially those with severe disease.
Dr. Alexis added that psoriasiform features have been reported in studies of East Asian populations with AD. These plaques may be more well demarcated and have clinical and histologic features that resemble psoriasis.
Dyspigmentation
One common feature across the spectrum of patients with skin of color “is the risk of longstanding pigmentary sequelae in the form of hyperpigmentation or hypopigmentation,” said Dr. Alexis, who is also vice chair for diversity and inclusion for the department of dermatology at Weill Cornell Medicine. “In very severe longstanding areas with chronic excoriation to the point of breaking of the skin, eroding of the skin, causing permanent damage to the melanocytes, dyspigmentation that resembles vitiligo can be seen. We can also see hypopigmentation as a consequence of topical corticosteroids, particularly those that are class I or class II and are used for prolonged periods of time.”
Dr. Alexis noted that delays in treatment and undertreatment can contribute to a higher risk of pigmentary and other long-term sequelae. “New therapies show promise in improving outcomes in AD patients with skin of color. When it comes to therapeutic responses, there are some post hoc studies that have investigated potential differences in safety and efficacy of the agents that have been recently approved. We clearly need more data to better understand if there are potential racial or ethnic differences.”
Dr. Alexis reported no relevant financial relationships.
Commentary by Lawrence F. Eichenfield, MD
Atopic dermatitis (AD) is highly heterogenous, with tremendous variations in extent, qualities of eczema, symptom complex, and physical presentation. Prior studies have reported disparities of care delivered to racial and ethnic minorities in the United States, as well as higher susceptibility to AD and odds of persistent disease into adulthood from child-onset AD. Recognizing some differences in presentation of AD in patients with skin of color is important as we select our therapeutic interventions, including assessing new treatments being added to our armamentarium. Erythema may be harder to notice in darker skin, but attempting to blanch the skin with pressure can help to assess the color and inflammation. Appreciating lichenoid changes, including papular and “micropapular” AD, and psoriasiform-like thickening in certain patients (reportedly more common in East Asian populations) are important as well. And dyspigmentation is an important aspect of the disease presentation and patient and parental concern, given both hypopigmentaton and hyperpigmentation commonly seen over the course of AD.
Dr. Eichenfield is chief of pediatric and adolescent dermatology at Rady Children's Hospital-San Diego. He is vice chair of the department of dermatology and professor of dermatology and pediatrics at the University of California, San Diego. He disclosed that he has served as an investigator and/or consultant to AbbVie, Lilly, Pfizer, Regeneron, Sanofi-Genzyme, and Verrica.
A version of this article first appeared on Medscape.com.
This article was updated 6/18/22.
“We see very heterogenous and broad clinical presentations across the diverse patient populations that we see,” Andrew F. Alexis, MD, MPH, said at the Revolutionizing Atopic Dermatitis symposium. “Some of these differences might be related to population variations in skin barrier function, immunologic factors, genetic factors, and environmental factors, which all interplay to produce variations in the clinical presentation and overall impact of AD. Many nongenetic factors also contribute to differences that we see, including some socioeconomic and other factors that feed into health disparities.”
Dr. Alexis, professor of clinical dermatology at Weill Cornell Medicine, New York, discussed four main clinical features of AD in skin of color.
Erythema is less visible because it is masked by pigment
“There can be some masking of the redness and alteration of that color such that it doesn’t look bright red as it would in the background of lightly pigmented skin,” Dr. Alexis said. “Instead, the [AD lesions] have shades of grayish-red or grayish-brown or reddish-brown. It’s important to recognize this clinical presentation and look carefully and assess the patient – not just visually but with palpation and take into consideration symptomatology so that you don’t fall into the trap of calling an AD lesion postinflammatory hyperpigmentation. It’s also helpful to isolate the islands of normal or nonlesional skin and contrast that with the areas of lesional skin, to get a sense of how active and inflamed the areas are. Palpation really helps to appreciate the elevation of the lesions that are involved.”
Follicular accentuation
Morphological variants common in skin of color include the follicular variant or micropapular variant of AD. “You might just see a collection of papules that are 1-2 mm in size and pruritic and in typical sites of predilection [for] eczema,” he said. Prurigo nodularis–like lesions or prurigo nodularis in association with AD are also seen more frequently in skin of color.
Lichenification
The lichenoid variant of AD is characterized by a violaceous hue and other features that resemble lichen planus and has been reported to be more common in individuals of African descent. A prospective study of about 1,000 patients with AD seen over 2 years at a dermatology clinic in southeastern Nigeria found that 54% of patients had papular lichenoid lesions. In addition, 51% had elevated blood eosinophil counts, especially those with severe disease.
Dr. Alexis added that psoriasiform features have been reported in studies of East Asian populations with AD. These plaques may be more well demarcated and have clinical and histologic features that resemble psoriasis.
Dyspigmentation
One common feature across the spectrum of patients with skin of color “is the risk of longstanding pigmentary sequelae in the form of hyperpigmentation or hypopigmentation,” said Dr. Alexis, who is also vice chair for diversity and inclusion for the department of dermatology at Weill Cornell Medicine. “In very severe longstanding areas with chronic excoriation to the point of breaking of the skin, eroding of the skin, causing permanent damage to the melanocytes, dyspigmentation that resembles vitiligo can be seen. We can also see hypopigmentation as a consequence of topical corticosteroids, particularly those that are class I or class II and are used for prolonged periods of time.”
Dr. Alexis noted that delays in treatment and undertreatment can contribute to a higher risk of pigmentary and other long-term sequelae. “New therapies show promise in improving outcomes in AD patients with skin of color. When it comes to therapeutic responses, there are some post hoc studies that have investigated potential differences in safety and efficacy of the agents that have been recently approved. We clearly need more data to better understand if there are potential racial or ethnic differences.”
Dr. Alexis reported no relevant financial relationships.
Commentary by Lawrence F. Eichenfield, MD
Atopic dermatitis (AD) is highly heterogenous, with tremendous variations in extent, qualities of eczema, symptom complex, and physical presentation. Prior studies have reported disparities of care delivered to racial and ethnic minorities in the United States, as well as higher susceptibility to AD and odds of persistent disease into adulthood from child-onset AD. Recognizing some differences in presentation of AD in patients with skin of color is important as we select our therapeutic interventions, including assessing new treatments being added to our armamentarium. Erythema may be harder to notice in darker skin, but attempting to blanch the skin with pressure can help to assess the color and inflammation. Appreciating lichenoid changes, including papular and “micropapular” AD, and psoriasiform-like thickening in certain patients (reportedly more common in East Asian populations) are important as well. And dyspigmentation is an important aspect of the disease presentation and patient and parental concern, given both hypopigmentaton and hyperpigmentation commonly seen over the course of AD.
Dr. Eichenfield is chief of pediatric and adolescent dermatology at Rady Children's Hospital-San Diego. He is vice chair of the department of dermatology and professor of dermatology and pediatrics at the University of California, San Diego. He disclosed that he has served as an investigator and/or consultant to AbbVie, Lilly, Pfizer, Regeneron, Sanofi-Genzyme, and Verrica.
A version of this article first appeared on Medscape.com.
This article was updated 6/18/22.
FROM REVOLUTIONIZING AD 2021
Fixing the maternal health problem in the U.S.: Signs of hope?
In the United States, nearly 4 million women a year prepare to give birth, looking forward to the joy to come. But for some, the dream turns tragic. And another 60,000 have pregnancy-related or childbirth-related health issues.
Causes of death vary greatly, including hemorrhage during pregnancy or during delivery, heart conditions, and mental health issues such as substance abuse and suicide after the birth.
In 2019, the U.S. maternal death rate was 20.1 per 100,000 women, according to the CDC, significantly higher than the 17.4 per 100,000 recorded in 2018. For Black women, the maternal death rate was more than double the overall – 44 per 100,000 in 2019.
“We have to address our horrendous maternal health care system and also need to address the inequities,” says Laurie Zephyrin, MD, vice president for advancing health equity for the Commonwealth Fund, a foundation supporting independent research on health care issues. “This is an issue that has needed national attention for a long time.”
“If we look overall, our maternal death rate is more than twice that of more than 10 other high-income countries,” she said.
As sobering as the problem is, recent developments have sparked hope that reversing the course is possible. Among them:
U.S. News & World Report, long known for its rankings of hospitals, issued its first ever “Best Hospitals for Maternity” rankings Dec. 7, highlighting facilities that perform well on key quality indicators. It plans to update the report annually.
At the first-ever White House Maternal Health Day of Action on Dec. 7, Vice President Kamala Harris urged a call to action to reduce maternal deaths and pregnancy-related health problems, with extension of postpartum coverage through Medicaid programs, among other actions.
A new hospital designation called ‘’Birthing Friendly” will be established by the Centers for Medicare & Medicaid Services. The label will be given to facilities that take part in a program aimed at improving maternal outcomes and that use patient safety practices.
President Joe Biden’s proposed Build Back Better plan includes maternal health provisions, including $3 billion in new maternal health funding. The money will aim to grow and diversify the workforce caring for pregnant women, coordinate care better, and step up research on maternal health, among other projects.
Ongoing efforts in Congress are aimed at fixing the wide disparities in maternal health affecting Black women. Regardless of income level or education, Black women are at a higher risk of maternal death and other health issues than are White women. A Black woman with a college education is at 60% higher risk of maternal death than a White or Hispanic woman who didn’t graduate high school, according to the Commonwealth Fund.
Best hospitals for maternity
For its rankings, U.S. News and World Report reached out to the 2,700 U.S. hospitals that offer maternity services, said Ben Harder, chief of health analysis and managing editor at U.S. News & World Report.
To be recognized, a hospital had to submit data from 2019 and meet the publication’s maternity care standards. The publication received responses from just 571 hospitals, representing about two of every five births in the country.
Of those, 237 were identified as best for maternity.
As to why the response rate was not higher, Mr. Harder cited the reporting burden and says it is understandable. Some hospitals likely did not have the staff available, especially during the pandemic, to gather the data needed to be evaluated by U.S. News & World Report.
On their other evaluations, the rankings are based on Medicare data, “so hospitals don’t have to lift a finger.” He expects more hospitals will respond for their future evaluations of maternity care.
The evaluators focused on five quality measures, making a score based on the cesarean section delivery rate among first-time mothers, early elective delivery rates, unexpected newborn complication rates, breastfeeding rates, and option for vaginal birth after C-section.
A call to action: Expand coverage
Speaking at the White House Maternal Health Day of Action, Mrs. Harris told participants: “The challenge is urgent, and it is important, and it will take all of us.”
Being pregnant and giving birth, she said, should not carry such great risks. She zeroed in on systemic inequities in the way women are treated and the dramatic impact maternal death and health issues have on the economy.
“A healthy economy requires healthy mothers and healthy babies,” Mrs. Harris said.
“Before, during, and after childbirth, women in our nation are dying at a higher rate than any other developed nation in our world,” she said, noting that research shows that Black women, Native Americans, and women in rural America more likely to suffer.
A major strategy in the call to action, according to Mrs. Harris, is encouraging states to expand postpartum coverage to pregnant women enrolled in Medicaid or the Children’s Health Insurance Program from the existing 60 days to a full year. Together, these two programs cover over 42% of births in the country, so expanding the coverage is expected to have a great impact.
The 60 days of coverage is not enough, as many deaths and complications happen more than 60 days after childbirth, Mrs. Harris said. The logistics for states to extend coverage were established by the American Rescue Plan and will become available by April 2022. Some states have already extended the postpartum coverage.
According to the Centers for Medicare and Medicaid Services, if every state did adopt an extension, as the Build Back Better Act proposes, the number of Americans getting coverage for a full year after childbirth would about double, extending the coverage for about 720,000 each year.
Congressional actions
Congress is working on the issue as well. The Black Maternal Health Momnibus Act of 2021, for instance, proposes several measures, including improving maternal nutrition, expanding affordable housing, and extending the maternal workforce to include more doulas and midwives.
“And for so many women, let’s note doulas are literally a lifeline,” Mrs. Harris said at the White House event.
Doulas are trained to offer women physical, emotional, and informational support before, during, and after childbirth. No reliable statistics are available on their numbers in the United States, but a March of Dimes report estimates that about 9,000 were included in a registration database in 2018.
Explaining and fixing the disparities
No one can explain for sure why Black women, in particular, are at higher risk of dying from pregnancy-related complications. Systemic inequity is one likely reason, Mrs. Harris said, noting there are differences in how people are treated based on who they are.
Inherent and unconscious bias in offering women treatment plays a role, experts say. Training could reverse or reduce that bias. Some women of color also may have less access to care, as do women in some rural areas.
According to Mrs. Harris, more than 20 companies and nonprofits have pledged to invest more than $20 million in maternal health efforts in the United States and more than $150 million globally. Among the proposed programs: remote-care monitors in rural areas, better care models for the postpartum period, and improved education programs for maternal health providers.
When statistics hit home
Many who work to improve maternal health have gone through issues themselves or had loved ones who did.
Jill Arnold, founder of the Maternal Safety Foundation in Bentonville, Ark., became a consumer advocate after giving birth to her two daughters, now teenagers. With the first birth, Ms. Arnold said she was intensely pressured at the last minute to have a C-section. She held out, resisted, and delivered a healthy baby vaginally.
For her second childbirth, she chose an accredited birth center that allowed her to have a doula and a midwife.
“The care I received was night and day,” she said. “The overwhelming pressure to consent to a C-section wasn’t there.”
She welcomes the information provided by the new U.S. News & World Report rankings as well as the upcoming “Birthing Friendly” designations.
“The onus shouldn’t be on patients, on individuals, on pregnant people to do the research,” Ms. Arnold said.
Rather, women and their partners need information at their fingertips so they can make an informed decision about how to give birth and where.
U.S. Rep. Lauren Underwood (D-Ill.), who cofounded the Black Maternal Health Caucus in April 2019, with Rep. Alma Adams (D-N.C.), wrote a touching blog in the journal Health Affairs to explain her passion in improving maternal health.
Her former classmate, Shalon Irving, who went on to become a CDC epidemiologist, died in February 2017 at age 36, just 3 weeks after giving birth, when she developed complications from high blood pressure.
In the blog, Ms. Underwood cited statistics and provides details of the Black Maternal Health Momnibus Act of 2021, then ends the blog, published in 2020, with an update on how Ms. Irving’s then 3-year-old daughter, raised by her grandmother, is doing. While Soleil is “curious, joyful, and brilliant,” the grandmother told Ms. Underwood that she has also walked into a room and found the little girl clutching a framed photograph of her mother.
The child’s question is understandable and heartbreaking: She wants to know where her mommy is.
“Soleil’s question is my motivation,” Ms. Underwood wrote. “To honor Shalon, and all the women like her who we have lost, let us take the serious and urgent action that is required to save our moms.”
A version of this article first appeared on WebMD.com.
In the United States, nearly 4 million women a year prepare to give birth, looking forward to the joy to come. But for some, the dream turns tragic. And another 60,000 have pregnancy-related or childbirth-related health issues.
Causes of death vary greatly, including hemorrhage during pregnancy or during delivery, heart conditions, and mental health issues such as substance abuse and suicide after the birth.
In 2019, the U.S. maternal death rate was 20.1 per 100,000 women, according to the CDC, significantly higher than the 17.4 per 100,000 recorded in 2018. For Black women, the maternal death rate was more than double the overall – 44 per 100,000 in 2019.
“We have to address our horrendous maternal health care system and also need to address the inequities,” says Laurie Zephyrin, MD, vice president for advancing health equity for the Commonwealth Fund, a foundation supporting independent research on health care issues. “This is an issue that has needed national attention for a long time.”
“If we look overall, our maternal death rate is more than twice that of more than 10 other high-income countries,” she said.
As sobering as the problem is, recent developments have sparked hope that reversing the course is possible. Among them:
U.S. News & World Report, long known for its rankings of hospitals, issued its first ever “Best Hospitals for Maternity” rankings Dec. 7, highlighting facilities that perform well on key quality indicators. It plans to update the report annually.
At the first-ever White House Maternal Health Day of Action on Dec. 7, Vice President Kamala Harris urged a call to action to reduce maternal deaths and pregnancy-related health problems, with extension of postpartum coverage through Medicaid programs, among other actions.
A new hospital designation called ‘’Birthing Friendly” will be established by the Centers for Medicare & Medicaid Services. The label will be given to facilities that take part in a program aimed at improving maternal outcomes and that use patient safety practices.
President Joe Biden’s proposed Build Back Better plan includes maternal health provisions, including $3 billion in new maternal health funding. The money will aim to grow and diversify the workforce caring for pregnant women, coordinate care better, and step up research on maternal health, among other projects.
Ongoing efforts in Congress are aimed at fixing the wide disparities in maternal health affecting Black women. Regardless of income level or education, Black women are at a higher risk of maternal death and other health issues than are White women. A Black woman with a college education is at 60% higher risk of maternal death than a White or Hispanic woman who didn’t graduate high school, according to the Commonwealth Fund.
Best hospitals for maternity
For its rankings, U.S. News and World Report reached out to the 2,700 U.S. hospitals that offer maternity services, said Ben Harder, chief of health analysis and managing editor at U.S. News & World Report.
To be recognized, a hospital had to submit data from 2019 and meet the publication’s maternity care standards. The publication received responses from just 571 hospitals, representing about two of every five births in the country.
Of those, 237 were identified as best for maternity.
As to why the response rate was not higher, Mr. Harder cited the reporting burden and says it is understandable. Some hospitals likely did not have the staff available, especially during the pandemic, to gather the data needed to be evaluated by U.S. News & World Report.
On their other evaluations, the rankings are based on Medicare data, “so hospitals don’t have to lift a finger.” He expects more hospitals will respond for their future evaluations of maternity care.
The evaluators focused on five quality measures, making a score based on the cesarean section delivery rate among first-time mothers, early elective delivery rates, unexpected newborn complication rates, breastfeeding rates, and option for vaginal birth after C-section.
A call to action: Expand coverage
Speaking at the White House Maternal Health Day of Action, Mrs. Harris told participants: “The challenge is urgent, and it is important, and it will take all of us.”
Being pregnant and giving birth, she said, should not carry such great risks. She zeroed in on systemic inequities in the way women are treated and the dramatic impact maternal death and health issues have on the economy.
“A healthy economy requires healthy mothers and healthy babies,” Mrs. Harris said.
“Before, during, and after childbirth, women in our nation are dying at a higher rate than any other developed nation in our world,” she said, noting that research shows that Black women, Native Americans, and women in rural America more likely to suffer.
A major strategy in the call to action, according to Mrs. Harris, is encouraging states to expand postpartum coverage to pregnant women enrolled in Medicaid or the Children’s Health Insurance Program from the existing 60 days to a full year. Together, these two programs cover over 42% of births in the country, so expanding the coverage is expected to have a great impact.
The 60 days of coverage is not enough, as many deaths and complications happen more than 60 days after childbirth, Mrs. Harris said. The logistics for states to extend coverage were established by the American Rescue Plan and will become available by April 2022. Some states have already extended the postpartum coverage.
According to the Centers for Medicare and Medicaid Services, if every state did adopt an extension, as the Build Back Better Act proposes, the number of Americans getting coverage for a full year after childbirth would about double, extending the coverage for about 720,000 each year.
Congressional actions
Congress is working on the issue as well. The Black Maternal Health Momnibus Act of 2021, for instance, proposes several measures, including improving maternal nutrition, expanding affordable housing, and extending the maternal workforce to include more doulas and midwives.
“And for so many women, let’s note doulas are literally a lifeline,” Mrs. Harris said at the White House event.
Doulas are trained to offer women physical, emotional, and informational support before, during, and after childbirth. No reliable statistics are available on their numbers in the United States, but a March of Dimes report estimates that about 9,000 were included in a registration database in 2018.
Explaining and fixing the disparities
No one can explain for sure why Black women, in particular, are at higher risk of dying from pregnancy-related complications. Systemic inequity is one likely reason, Mrs. Harris said, noting there are differences in how people are treated based on who they are.
Inherent and unconscious bias in offering women treatment plays a role, experts say. Training could reverse or reduce that bias. Some women of color also may have less access to care, as do women in some rural areas.
According to Mrs. Harris, more than 20 companies and nonprofits have pledged to invest more than $20 million in maternal health efforts in the United States and more than $150 million globally. Among the proposed programs: remote-care monitors in rural areas, better care models for the postpartum period, and improved education programs for maternal health providers.
When statistics hit home
Many who work to improve maternal health have gone through issues themselves or had loved ones who did.
Jill Arnold, founder of the Maternal Safety Foundation in Bentonville, Ark., became a consumer advocate after giving birth to her two daughters, now teenagers. With the first birth, Ms. Arnold said she was intensely pressured at the last minute to have a C-section. She held out, resisted, and delivered a healthy baby vaginally.
For her second childbirth, she chose an accredited birth center that allowed her to have a doula and a midwife.
“The care I received was night and day,” she said. “The overwhelming pressure to consent to a C-section wasn’t there.”
She welcomes the information provided by the new U.S. News & World Report rankings as well as the upcoming “Birthing Friendly” designations.
“The onus shouldn’t be on patients, on individuals, on pregnant people to do the research,” Ms. Arnold said.
Rather, women and their partners need information at their fingertips so they can make an informed decision about how to give birth and where.
U.S. Rep. Lauren Underwood (D-Ill.), who cofounded the Black Maternal Health Caucus in April 2019, with Rep. Alma Adams (D-N.C.), wrote a touching blog in the journal Health Affairs to explain her passion in improving maternal health.
Her former classmate, Shalon Irving, who went on to become a CDC epidemiologist, died in February 2017 at age 36, just 3 weeks after giving birth, when she developed complications from high blood pressure.
In the blog, Ms. Underwood cited statistics and provides details of the Black Maternal Health Momnibus Act of 2021, then ends the blog, published in 2020, with an update on how Ms. Irving’s then 3-year-old daughter, raised by her grandmother, is doing. While Soleil is “curious, joyful, and brilliant,” the grandmother told Ms. Underwood that she has also walked into a room and found the little girl clutching a framed photograph of her mother.
The child’s question is understandable and heartbreaking: She wants to know where her mommy is.
“Soleil’s question is my motivation,” Ms. Underwood wrote. “To honor Shalon, and all the women like her who we have lost, let us take the serious and urgent action that is required to save our moms.”
A version of this article first appeared on WebMD.com.
In the United States, nearly 4 million women a year prepare to give birth, looking forward to the joy to come. But for some, the dream turns tragic. And another 60,000 have pregnancy-related or childbirth-related health issues.
Causes of death vary greatly, including hemorrhage during pregnancy or during delivery, heart conditions, and mental health issues such as substance abuse and suicide after the birth.
In 2019, the U.S. maternal death rate was 20.1 per 100,000 women, according to the CDC, significantly higher than the 17.4 per 100,000 recorded in 2018. For Black women, the maternal death rate was more than double the overall – 44 per 100,000 in 2019.
“We have to address our horrendous maternal health care system and also need to address the inequities,” says Laurie Zephyrin, MD, vice president for advancing health equity for the Commonwealth Fund, a foundation supporting independent research on health care issues. “This is an issue that has needed national attention for a long time.”
“If we look overall, our maternal death rate is more than twice that of more than 10 other high-income countries,” she said.
As sobering as the problem is, recent developments have sparked hope that reversing the course is possible. Among them:
U.S. News & World Report, long known for its rankings of hospitals, issued its first ever “Best Hospitals for Maternity” rankings Dec. 7, highlighting facilities that perform well on key quality indicators. It plans to update the report annually.
At the first-ever White House Maternal Health Day of Action on Dec. 7, Vice President Kamala Harris urged a call to action to reduce maternal deaths and pregnancy-related health problems, with extension of postpartum coverage through Medicaid programs, among other actions.
A new hospital designation called ‘’Birthing Friendly” will be established by the Centers for Medicare & Medicaid Services. The label will be given to facilities that take part in a program aimed at improving maternal outcomes and that use patient safety practices.
President Joe Biden’s proposed Build Back Better plan includes maternal health provisions, including $3 billion in new maternal health funding. The money will aim to grow and diversify the workforce caring for pregnant women, coordinate care better, and step up research on maternal health, among other projects.
Ongoing efforts in Congress are aimed at fixing the wide disparities in maternal health affecting Black women. Regardless of income level or education, Black women are at a higher risk of maternal death and other health issues than are White women. A Black woman with a college education is at 60% higher risk of maternal death than a White or Hispanic woman who didn’t graduate high school, according to the Commonwealth Fund.
Best hospitals for maternity
For its rankings, U.S. News and World Report reached out to the 2,700 U.S. hospitals that offer maternity services, said Ben Harder, chief of health analysis and managing editor at U.S. News & World Report.
To be recognized, a hospital had to submit data from 2019 and meet the publication’s maternity care standards. The publication received responses from just 571 hospitals, representing about two of every five births in the country.
Of those, 237 were identified as best for maternity.
As to why the response rate was not higher, Mr. Harder cited the reporting burden and says it is understandable. Some hospitals likely did not have the staff available, especially during the pandemic, to gather the data needed to be evaluated by U.S. News & World Report.
On their other evaluations, the rankings are based on Medicare data, “so hospitals don’t have to lift a finger.” He expects more hospitals will respond for their future evaluations of maternity care.
The evaluators focused on five quality measures, making a score based on the cesarean section delivery rate among first-time mothers, early elective delivery rates, unexpected newborn complication rates, breastfeeding rates, and option for vaginal birth after C-section.
A call to action: Expand coverage
Speaking at the White House Maternal Health Day of Action, Mrs. Harris told participants: “The challenge is urgent, and it is important, and it will take all of us.”
Being pregnant and giving birth, she said, should not carry such great risks. She zeroed in on systemic inequities in the way women are treated and the dramatic impact maternal death and health issues have on the economy.
“A healthy economy requires healthy mothers and healthy babies,” Mrs. Harris said.
“Before, during, and after childbirth, women in our nation are dying at a higher rate than any other developed nation in our world,” she said, noting that research shows that Black women, Native Americans, and women in rural America more likely to suffer.
A major strategy in the call to action, according to Mrs. Harris, is encouraging states to expand postpartum coverage to pregnant women enrolled in Medicaid or the Children’s Health Insurance Program from the existing 60 days to a full year. Together, these two programs cover over 42% of births in the country, so expanding the coverage is expected to have a great impact.
The 60 days of coverage is not enough, as many deaths and complications happen more than 60 days after childbirth, Mrs. Harris said. The logistics for states to extend coverage were established by the American Rescue Plan and will become available by April 2022. Some states have already extended the postpartum coverage.
According to the Centers for Medicare and Medicaid Services, if every state did adopt an extension, as the Build Back Better Act proposes, the number of Americans getting coverage for a full year after childbirth would about double, extending the coverage for about 720,000 each year.
Congressional actions
Congress is working on the issue as well. The Black Maternal Health Momnibus Act of 2021, for instance, proposes several measures, including improving maternal nutrition, expanding affordable housing, and extending the maternal workforce to include more doulas and midwives.
“And for so many women, let’s note doulas are literally a lifeline,” Mrs. Harris said at the White House event.
Doulas are trained to offer women physical, emotional, and informational support before, during, and after childbirth. No reliable statistics are available on their numbers in the United States, but a March of Dimes report estimates that about 9,000 were included in a registration database in 2018.
Explaining and fixing the disparities
No one can explain for sure why Black women, in particular, are at higher risk of dying from pregnancy-related complications. Systemic inequity is one likely reason, Mrs. Harris said, noting there are differences in how people are treated based on who they are.
Inherent and unconscious bias in offering women treatment plays a role, experts say. Training could reverse or reduce that bias. Some women of color also may have less access to care, as do women in some rural areas.
According to Mrs. Harris, more than 20 companies and nonprofits have pledged to invest more than $20 million in maternal health efforts in the United States and more than $150 million globally. Among the proposed programs: remote-care monitors in rural areas, better care models for the postpartum period, and improved education programs for maternal health providers.
When statistics hit home
Many who work to improve maternal health have gone through issues themselves or had loved ones who did.
Jill Arnold, founder of the Maternal Safety Foundation in Bentonville, Ark., became a consumer advocate after giving birth to her two daughters, now teenagers. With the first birth, Ms. Arnold said she was intensely pressured at the last minute to have a C-section. She held out, resisted, and delivered a healthy baby vaginally.
For her second childbirth, she chose an accredited birth center that allowed her to have a doula and a midwife.
“The care I received was night and day,” she said. “The overwhelming pressure to consent to a C-section wasn’t there.”
She welcomes the information provided by the new U.S. News & World Report rankings as well as the upcoming “Birthing Friendly” designations.
“The onus shouldn’t be on patients, on individuals, on pregnant people to do the research,” Ms. Arnold said.
Rather, women and their partners need information at their fingertips so they can make an informed decision about how to give birth and where.
U.S. Rep. Lauren Underwood (D-Ill.), who cofounded the Black Maternal Health Caucus in April 2019, with Rep. Alma Adams (D-N.C.), wrote a touching blog in the journal Health Affairs to explain her passion in improving maternal health.
Her former classmate, Shalon Irving, who went on to become a CDC epidemiologist, died in February 2017 at age 36, just 3 weeks after giving birth, when she developed complications from high blood pressure.
In the blog, Ms. Underwood cited statistics and provides details of the Black Maternal Health Momnibus Act of 2021, then ends the blog, published in 2020, with an update on how Ms. Irving’s then 3-year-old daughter, raised by her grandmother, is doing. While Soleil is “curious, joyful, and brilliant,” the grandmother told Ms. Underwood that she has also walked into a room and found the little girl clutching a framed photograph of her mother.
The child’s question is understandable and heartbreaking: She wants to know where her mommy is.
“Soleil’s question is my motivation,” Ms. Underwood wrote. “To honor Shalon, and all the women like her who we have lost, let us take the serious and urgent action that is required to save our moms.”
A version of this article first appeared on WebMD.com.
A case-based framework for de-escalating conflict
Hospital medicine can be a demanding and fast-paced environment where resources are stretched thin, with both clinicians and patients stressed. A hospitalist’s role is dynamic, serving as an advocate, leader, or role model while working with interdisciplinary and diverse teams for the welfare of the patient. This constellation of pressures makes a degree of conflict inevitable.
Often, an unexpected scenario can render the hospitalist uncertain and yet the hospitalist’s response can escalate or deescalate conflict. The multiple roles that a hospitalist represents may buckle to the single role of advocating for themselves, a colleague, or a patient in a tense scenario. When this happens, many hospitalists feel disempowered to respond.
De-escalation is a practical skill that involves being calm, respectful, and open minded toward the other person, while also maintaining boundaries. Here we provide case-based tips and skills that highlight the role for de-escalation.
Questions to ask yourself in midst of conflict:
- How did the problematic behavior make you feel?
- What will be your approach in handling this?
- When should you address this?
- What is the outcome you are hoping to achieve?
- What is the outcome the other person is hoping to achieve?
Case 1
There is a female physician rounding with your team. Introductions were made at the start of a patient encounter. The patient repeatedly calls the female physician by her first name and refers to a male colleague as “doctor.”
Commentary: This scenario is commonly encountered by women who are physicians. They may be mistaken for the nurse, a technician, or a housekeeper. This exacerbates inequality and impostor syndrome as women can feel unheard, undervalued, and not recognized for their expertise and achievements. It can be challenging for a woman to reaffirm herself as she worries that the patient will not respect her or will think that she is being aggressive.
Approach: It is vital to interject by firmly reintroducing the female physician by her correct title. If you are the subject of this scenario, you may interject by firmly reintroducing yourself. If the patient or a colleague continues to refer to her by her first name, it is appropriate to say, “Please call her Dr. XYZ.” There is likely another female colleague or trainee nearby that will view this scenario as a model for setting boundaries.
To prevent similar future situations, consistently refer to all peers by their title in front of patients and peers in all professional settings (such as lectures, luncheons, etc.) to establish this as a cultural norm. Also, utilize hospital badges that clearly display roles in large letters.
Case 2
During sign out from a colleague, the colleague repeatedly refers to a patient hospitalized with sickle cell disease as a “frequent flyer” and “drug seeker,” and then remarks, “you know how these patients are.”
Commentary: A situation like this raises concerns about bias and stereotyping. Everyone has implicit bias. Recognizing and acknowledging when implicit bias affects objectivity in patient care is vital to providing appropriate care. It can be intimidating to broach this subject with a colleague as it may cause the colleague to become defensive and uncomfortable as revealing another person’s bias can be difficult. But physicians owe it to a patient’s wellbeing to remain objective and to prevent future colleagues from providing subpar care as a result.
Approach: In this case, saying, “Sometimes my previous experiences can affect my thinking. Will you explain what behaviors the patient has shown this admission that are concerning to you? This will allow me to grasp the complexity of the situation.” Another strategy is to share that there are new recommendations for how to use language about patients with sickle cell disease and patients who require opioids as a part of their treatment plan. Your hospitalist group could have a journal club on how bias affects patients and about the best practices in the care of people with sickle cell disease. A next step could be to build a quality improvement project to review the care of patients hospitalized for sickle cell disease or opioid use.
Case 3
You are conducting bedside rounds with your team. Your intern, a person of color, begins to present. The patient interjects by requesting that the intern leave as he “does not want a foreigner taking care” of him.
Commentary: Requests like this can be shocking. The team leader has a responsibility to immediately act to ensure the psychological safety of the team. Ideally, your response should set firm boundaries and expectations that support the learner as a valued and respected clinician and allow the intern to complete the presentation. In this scenario, regardless of the response the patient takes, it is vital to maintain a safe environment for the trainee. It is crucial to debrief with the team immediately after as an exchange of thoughts and emotions in a safe space can allow for everyone to feel welcome. Additionally, this debrief can provide insights to the team leader of how to address similar situations in the future. The opportunity to allow the intern to no longer follow the patient should be offered, and if the intern opts to no longer follow the patient, accommodations should be made.
Approach: “This physician is a member of the medical team, and we are all working together to provide you with the best care. Everyone on this team is an equal. We value diversity of our team members as it allows us to take care of all our patients. We respect you and expect respect for each member of the team. If you feel that you are unable to respect our team members right now, we will leave for now and return later.” To ensure the patient is provided with appropriate care, be sure to debrief with the patient’s nurse.
Conclusion
These scenarios represent some of the many complex interpersonal challenges hospitalists encounter. These approaches are suggestions that are open to improvement as de-escalation of a conflict is a critical and evolving skill and practice.
For more tips on managing conflict, consider reading “Crucial Conversations” by Kerry Patterson and colleagues. These skills can provide the tools we need to recenter ourselves when we are in the midst of these challenging situations.
Dr. Rawal is clinical assistant professor of medicine at the University of Pittsburgh Medical Center. Dr. Ashford is assistant professor and program director in the department of internal medicine/pediatrics at the University of Nebraska Medical Center, Omaha. Dr. Lee and Dr. Barrett are based in the department of internal medicine, University of New Mexico School of Medicine, Albuquerque. This article is sponsored by the SHM Physicians in Training (PIT) committee, which submits quarterly content to The Hospitalist on topics relevant to trainees and early career hospitalists.
Hospital medicine can be a demanding and fast-paced environment where resources are stretched thin, with both clinicians and patients stressed. A hospitalist’s role is dynamic, serving as an advocate, leader, or role model while working with interdisciplinary and diverse teams for the welfare of the patient. This constellation of pressures makes a degree of conflict inevitable.
Often, an unexpected scenario can render the hospitalist uncertain and yet the hospitalist’s response can escalate or deescalate conflict. The multiple roles that a hospitalist represents may buckle to the single role of advocating for themselves, a colleague, or a patient in a tense scenario. When this happens, many hospitalists feel disempowered to respond.
De-escalation is a practical skill that involves being calm, respectful, and open minded toward the other person, while also maintaining boundaries. Here we provide case-based tips and skills that highlight the role for de-escalation.
Questions to ask yourself in midst of conflict:
- How did the problematic behavior make you feel?
- What will be your approach in handling this?
- When should you address this?
- What is the outcome you are hoping to achieve?
- What is the outcome the other person is hoping to achieve?
Case 1
There is a female physician rounding with your team. Introductions were made at the start of a patient encounter. The patient repeatedly calls the female physician by her first name and refers to a male colleague as “doctor.”
Commentary: This scenario is commonly encountered by women who are physicians. They may be mistaken for the nurse, a technician, or a housekeeper. This exacerbates inequality and impostor syndrome as women can feel unheard, undervalued, and not recognized for their expertise and achievements. It can be challenging for a woman to reaffirm herself as she worries that the patient will not respect her or will think that she is being aggressive.
Approach: It is vital to interject by firmly reintroducing the female physician by her correct title. If you are the subject of this scenario, you may interject by firmly reintroducing yourself. If the patient or a colleague continues to refer to her by her first name, it is appropriate to say, “Please call her Dr. XYZ.” There is likely another female colleague or trainee nearby that will view this scenario as a model for setting boundaries.
To prevent similar future situations, consistently refer to all peers by their title in front of patients and peers in all professional settings (such as lectures, luncheons, etc.) to establish this as a cultural norm. Also, utilize hospital badges that clearly display roles in large letters.
Case 2
During sign out from a colleague, the colleague repeatedly refers to a patient hospitalized with sickle cell disease as a “frequent flyer” and “drug seeker,” and then remarks, “you know how these patients are.”
Commentary: A situation like this raises concerns about bias and stereotyping. Everyone has implicit bias. Recognizing and acknowledging when implicit bias affects objectivity in patient care is vital to providing appropriate care. It can be intimidating to broach this subject with a colleague as it may cause the colleague to become defensive and uncomfortable as revealing another person’s bias can be difficult. But physicians owe it to a patient’s wellbeing to remain objective and to prevent future colleagues from providing subpar care as a result.
Approach: In this case, saying, “Sometimes my previous experiences can affect my thinking. Will you explain what behaviors the patient has shown this admission that are concerning to you? This will allow me to grasp the complexity of the situation.” Another strategy is to share that there are new recommendations for how to use language about patients with sickle cell disease and patients who require opioids as a part of their treatment plan. Your hospitalist group could have a journal club on how bias affects patients and about the best practices in the care of people with sickle cell disease. A next step could be to build a quality improvement project to review the care of patients hospitalized for sickle cell disease or opioid use.
Case 3
You are conducting bedside rounds with your team. Your intern, a person of color, begins to present. The patient interjects by requesting that the intern leave as he “does not want a foreigner taking care” of him.
Commentary: Requests like this can be shocking. The team leader has a responsibility to immediately act to ensure the psychological safety of the team. Ideally, your response should set firm boundaries and expectations that support the learner as a valued and respected clinician and allow the intern to complete the presentation. In this scenario, regardless of the response the patient takes, it is vital to maintain a safe environment for the trainee. It is crucial to debrief with the team immediately after as an exchange of thoughts and emotions in a safe space can allow for everyone to feel welcome. Additionally, this debrief can provide insights to the team leader of how to address similar situations in the future. The opportunity to allow the intern to no longer follow the patient should be offered, and if the intern opts to no longer follow the patient, accommodations should be made.
Approach: “This physician is a member of the medical team, and we are all working together to provide you with the best care. Everyone on this team is an equal. We value diversity of our team members as it allows us to take care of all our patients. We respect you and expect respect for each member of the team. If you feel that you are unable to respect our team members right now, we will leave for now and return later.” To ensure the patient is provided with appropriate care, be sure to debrief with the patient’s nurse.
Conclusion
These scenarios represent some of the many complex interpersonal challenges hospitalists encounter. These approaches are suggestions that are open to improvement as de-escalation of a conflict is a critical and evolving skill and practice.
For more tips on managing conflict, consider reading “Crucial Conversations” by Kerry Patterson and colleagues. These skills can provide the tools we need to recenter ourselves when we are in the midst of these challenging situations.
Dr. Rawal is clinical assistant professor of medicine at the University of Pittsburgh Medical Center. Dr. Ashford is assistant professor and program director in the department of internal medicine/pediatrics at the University of Nebraska Medical Center, Omaha. Dr. Lee and Dr. Barrett are based in the department of internal medicine, University of New Mexico School of Medicine, Albuquerque. This article is sponsored by the SHM Physicians in Training (PIT) committee, which submits quarterly content to The Hospitalist on topics relevant to trainees and early career hospitalists.
Hospital medicine can be a demanding and fast-paced environment where resources are stretched thin, with both clinicians and patients stressed. A hospitalist’s role is dynamic, serving as an advocate, leader, or role model while working with interdisciplinary and diverse teams for the welfare of the patient. This constellation of pressures makes a degree of conflict inevitable.
Often, an unexpected scenario can render the hospitalist uncertain and yet the hospitalist’s response can escalate or deescalate conflict. The multiple roles that a hospitalist represents may buckle to the single role of advocating for themselves, a colleague, or a patient in a tense scenario. When this happens, many hospitalists feel disempowered to respond.
De-escalation is a practical skill that involves being calm, respectful, and open minded toward the other person, while also maintaining boundaries. Here we provide case-based tips and skills that highlight the role for de-escalation.
Questions to ask yourself in midst of conflict:
- How did the problematic behavior make you feel?
- What will be your approach in handling this?
- When should you address this?
- What is the outcome you are hoping to achieve?
- What is the outcome the other person is hoping to achieve?
Case 1
There is a female physician rounding with your team. Introductions were made at the start of a patient encounter. The patient repeatedly calls the female physician by her first name and refers to a male colleague as “doctor.”
Commentary: This scenario is commonly encountered by women who are physicians. They may be mistaken for the nurse, a technician, or a housekeeper. This exacerbates inequality and impostor syndrome as women can feel unheard, undervalued, and not recognized for their expertise and achievements. It can be challenging for a woman to reaffirm herself as she worries that the patient will not respect her or will think that she is being aggressive.
Approach: It is vital to interject by firmly reintroducing the female physician by her correct title. If you are the subject of this scenario, you may interject by firmly reintroducing yourself. If the patient or a colleague continues to refer to her by her first name, it is appropriate to say, “Please call her Dr. XYZ.” There is likely another female colleague or trainee nearby that will view this scenario as a model for setting boundaries.
To prevent similar future situations, consistently refer to all peers by their title in front of patients and peers in all professional settings (such as lectures, luncheons, etc.) to establish this as a cultural norm. Also, utilize hospital badges that clearly display roles in large letters.
Case 2
During sign out from a colleague, the colleague repeatedly refers to a patient hospitalized with sickle cell disease as a “frequent flyer” and “drug seeker,” and then remarks, “you know how these patients are.”
Commentary: A situation like this raises concerns about bias and stereotyping. Everyone has implicit bias. Recognizing and acknowledging when implicit bias affects objectivity in patient care is vital to providing appropriate care. It can be intimidating to broach this subject with a colleague as it may cause the colleague to become defensive and uncomfortable as revealing another person’s bias can be difficult. But physicians owe it to a patient’s wellbeing to remain objective and to prevent future colleagues from providing subpar care as a result.
Approach: In this case, saying, “Sometimes my previous experiences can affect my thinking. Will you explain what behaviors the patient has shown this admission that are concerning to you? This will allow me to grasp the complexity of the situation.” Another strategy is to share that there are new recommendations for how to use language about patients with sickle cell disease and patients who require opioids as a part of their treatment plan. Your hospitalist group could have a journal club on how bias affects patients and about the best practices in the care of people with sickle cell disease. A next step could be to build a quality improvement project to review the care of patients hospitalized for sickle cell disease or opioid use.
Case 3
You are conducting bedside rounds with your team. Your intern, a person of color, begins to present. The patient interjects by requesting that the intern leave as he “does not want a foreigner taking care” of him.
Commentary: Requests like this can be shocking. The team leader has a responsibility to immediately act to ensure the psychological safety of the team. Ideally, your response should set firm boundaries and expectations that support the learner as a valued and respected clinician and allow the intern to complete the presentation. In this scenario, regardless of the response the patient takes, it is vital to maintain a safe environment for the trainee. It is crucial to debrief with the team immediately after as an exchange of thoughts and emotions in a safe space can allow for everyone to feel welcome. Additionally, this debrief can provide insights to the team leader of how to address similar situations in the future. The opportunity to allow the intern to no longer follow the patient should be offered, and if the intern opts to no longer follow the patient, accommodations should be made.
Approach: “This physician is a member of the medical team, and we are all working together to provide you with the best care. Everyone on this team is an equal. We value diversity of our team members as it allows us to take care of all our patients. We respect you and expect respect for each member of the team. If you feel that you are unable to respect our team members right now, we will leave for now and return later.” To ensure the patient is provided with appropriate care, be sure to debrief with the patient’s nurse.
Conclusion
These scenarios represent some of the many complex interpersonal challenges hospitalists encounter. These approaches are suggestions that are open to improvement as de-escalation of a conflict is a critical and evolving skill and practice.
For more tips on managing conflict, consider reading “Crucial Conversations” by Kerry Patterson and colleagues. These skills can provide the tools we need to recenter ourselves when we are in the midst of these challenging situations.
Dr. Rawal is clinical assistant professor of medicine at the University of Pittsburgh Medical Center. Dr. Ashford is assistant professor and program director in the department of internal medicine/pediatrics at the University of Nebraska Medical Center, Omaha. Dr. Lee and Dr. Barrett are based in the department of internal medicine, University of New Mexico School of Medicine, Albuquerque. This article is sponsored by the SHM Physicians in Training (PIT) committee, which submits quarterly content to The Hospitalist on topics relevant to trainees and early career hospitalists.
Racial, other disparities in blood cancer treatment
As compared with White individuals, minorities often face higher barriers to cancer care. Racial and ethnic disparities in patients with solid tumors, particularly those of the prostate and breast, have been well documented. Hematologic malignancies are less common, but an increasing number of studies have documented disparities within this subgroup of cancer, particularly among Black and non-White Hispanics. An increasing armamentarium of therapeutics, including novel chemotherapy agents and targeted molecular, cellular, and immunologic therapies, has highlighted the need for understanding and exploring the differences in care as well as biology, which may lead to disparate outcomes.
Overall, an estimated 186,400 people living in the United States are expected to be diagnosed with leukemia, lymphoma, or myeloma in 2021, and new cases of hematologic malignancies are expected to account for 9.8% of the estimated 1,898,160 new cancer cases diagnosed this year.1
The underlying reasons for disparities are highly complex and multifactorial, and clinicians must consider how the biologic, clinical, demographic, and socioeconomic characteristics of their patients interact. All of these factors can play a role in prognosis and/or access to care.
Disparities in leukemia
Leukemia is a heterogeneous group of diseases affecting both children and adults, but during the past few decades survival rates have steadily improved, particularly among children. Response to therapy and prognosis do vary among leukemia types, but one large analysis reported that there were overall improvements in survival seen across racial/ethnic groups, most age groups, and genders during a 40-year period.2
From 1973 through 2014, survival trends were assessed across four leukemia types: acute lymphoblastic leukemia (ALL), acute myeloid leukemia (AML), chronic myeloid leukemia (CML), and chronic lymphoid leukemia (CLL). After stratifying survival for each leukemia type by race/ethnicity, improvement rates were not uniform among all groups.
For example, there were substantial improvements of leukemia-specific survival in 2010-2014 among Black (81.0%) and Asian (80.0%) patients with CML, as well as younger patients (20-49 years) with CLL (96.0%). But in contrast, Black patients, those with AML, and individuals over the age of 75 years experienced the lowest improvement in survival.
Studies have found that Hispanics have increased rates of ALL and acute promyelocytic leukemia (APL), but lower rates of AML, as compared to Whites. They also tend to be diagnosed at a younger age and have poorer overall survival.3
Demographics may also play a role, as Hispanics born outside the United States had a higher incidence rate of APL versus U.S.-born Hispanics (incidence rate ratio, 1.79; 1.11-2.94). Thus, the higher incidence rates of increased B-cell ALL may be due to heritable genetic factors, while APL may also be attributable to environmental exposures.4
Hispanics living on the Texas-Mexico border were also found to have a higher incidence of chronic myeloid leukemia (RR, 1.28; 95% CI, 1.07-1.51; P = .02) and acute myeloid leukemia (RR, 1.17; 95% CI, 1.04-1.33; P = .0009) as compared with Hispanics living elsewhere in Texas5 AML and CML were more likely to be observed in patients who resided in this border region, and those with ALL, AML, and CML had worse outcomes compared with Hispanics living elsewhere in Texas. In addition, both Hispanic and non-Hispanic patients along the border have a worse prognosis for ALL than patients in other areas of Texas.
“We don’t yet understand if the differences are due to nonbiologic factors, or if biology plays a role because of the more aggressive disease that we’re seeing,” said study author Anna Eiring, PhD, an assistant professor at Texas Tech University, El Paso. “This is a medically underserved region, and even though we are a safety net hospital, many of the Hispanic patients don’t have health insurance.”
They also tend to have worse socioeconomic status compared with non-Hispanic populations, and there may also be lifestyle and environmental factors. “Exposure to environmental toxins may also play a role, as many work in jobs that could put them at risk,” she said. “Lifestyle factors may also play a role.”
AML is a hematopoietic disorder that is characterized by numerous cytogenetic and molecular aberrations, with poor overall survival. Researchers found that Black patients had shorter survival than White patients, based on an analysis of Surveillance Epidemiology and End Results (SEER) Program data, and performing and performed mutational profiling of 1,339 patients with AML treated on frontline Alliance for Clinical Trials in Oncology (Alliance) protocols.6 The disparity was especially pronounced in Black patients under 60 years old, after adjustment for socioeconomic (SEER) and molecular (Alliance) factors. Black race was an independent prognosticator of poor survival.
“Based on our analyses in Black and White AML patients under the age of 60 years, we believe that a differential impact of molecular aberrations, specifically AML-associated gene mutations, contribute to the observed survival disparities,” said study author Ann-Kathrin Eisfeld, MD, an assistant professor in the division of hematology at the Ohio State University, Columbus, and a member of the leukemia research program at the university’s comprehensive cancer center, the James. “For example, NPM1 mutations seem to lack the known positive prognostic impact we are used to seeing in previous studies with White AML patients.”
She noted that when looking at molecular prognosticators just within Black AML patients, researchers found that FLT3-ITD and also IDH2 mutations were associated with poor overall survival. “While FLT3-ITD is a known adverse prognosticator, the significant impact of IDH2 mutations was surprising to us and is currently being further explored,” said Dr. Eisfeld.
“In general, however, it can’t be highlighted enough that while this study suggests an impact of somatic tumor genomics that needs a lot more attention and investigation and ideally, also prospective studies, structural racism and its impact is still the problem,” she emphasized. “It’s the ‘elephant in the room’ and the major factor that needs to be addressed in order to improve and overcome these survival disparities.”
Disparities in lymphoma
Similar to leukemia, lymphomas are a heterogenous and diverse group of malignancies that range from indolent to highly aggressive. The two main types are listed below:
Non-Hodgkin lymphoma (NHL), the most common subtype, with about 80,000 new cases a year in the United States. There are more than 90 types of NHL, the most common being B-cell lymphomas, which include diffuse large B cell, primary mediastinal B cell, follicular, small lymphocytic lymphoma, and chronic lymphocytic leukemia; marginal zone, mantle zone, and Burkitt lymphomas; and Waldenström macroglobulinemia.
Hodgkin lymphoma (HL), less common than NHL, with about 9,000 people diagnosed every year. There are five types of HL, and it is primarily seen in children and young adults.
Disparities in incidence, age at diagnosis, and overall survival have been observed in lymphoma, which, aside from marginal zone and follicular lymphoma, are more common among men. The incidence of most lymphoma subtypes is generally lower in racial and ethnic minority groups, although Black and Hispanic patients tend to be diagnosed at a younger age, and in Black patients, at a more advanced stage and the lymphomas have higher risk features at initial presentation.7
One study that looked at racial disparities in Hodgkin lymphoma found that HL was significantly more common in Hispanics versus Whites under the age of 65 years. The 5-, 10-, and 15-year overall survival rates were also inferior for Blacks and Hispanics compared with Whites (P less than 0.005 and P less than 0.001, respectively).8
Diffuse large B-cell lymphoma (DLBCL) is the most common subtype of non-Hodgkin lymphoma in the United States, comprising approximately one-third of lymphomas diagnosed in adults (Lee et al. 2020). In one study that examined ancestry and tumor genomics, recurrent somatic mutations in established driver genes, such as ATM, MGA, SETD2, TET2, DNMT3A, and MLL3, were observed more frequently in patients with African ancestry versus those of European ancestry.9 Other data suggest a variety of disparities in receipt of treatment. For example, patients with localized disease who were Black, uninsured/Medicaid insured, or of lower socioeconomic status were less likely to receive any form of chemotherapy (all P less than 0.0001), and Black race was also associated with being less likely to receive chemoimmunotherapy.
Leveling the field of disparities is complex and requires a multifaceted approach. But one facility found that they could help minority patients overcome some of the hurdles related to nonbiologic factors by the support of a nurse navigator in addition to therapy.10 Their study included 204 patients with DLBCL (47 minority patients and 157 White patients) and following the initiation of the nurse navigator program, virtually all patients received frontline chemotherapy (98% versus 96%). The incidence of relapsed/refractory disease was similar (40% versus 38%) and in the relapsed/refractory population, similar proportions of patients underwent hematopoietic stem cell transplantation (32% versus 29%) or received chimeric antigen receptor T-cell therapy (16% versus 19%). The 2-year overall survival rates were 81% and 76% for minorities and Whites, respectively, and 2-year progression-free survival rates were 62% and 65%, respectively.
“We found that the minority patients often needed more help to get care, and they utilized the nurse navigator more intensively,” said study author Bei Hu, MD, who is with the department of hematologic oncology and blood disorders, Levine Cancer Institute/Atrium Health, Charlotte, N.C. “The nurse navigator was able to help them with things like finances, transportation, and insurance.”
Minorities tended to face more barriers than White patients. “Even something as simple as needing money for gas to get to the clinic can be a barrier to care,” said Dr. Hu. “And many of the patients are often uncomfortable discussing these things with their physician – plus a lot is covered in our appointments and we focus on the cancer. So, they may be more comfortable discussing these issues with the nurse.”
Disparities in multiple myeloma
Multiple myeloma is the malignant clonal proliferation of plasma B cells in the bone marrow and, despite the advent of new therapies, remains incurable and generally fatal. It progresses from the more common but often subclinical precursor states of monoclonal gammopathy of undetermined significance (MGUS) and smoldering multiple myeloma (SMM) to overt and symptomatic multiple myeloma. Racial disparities have been observed in all stages of the disease, and as compared with Whites, individuals who are Black have a higher risk of MGUS and myeloma and a higher mortality rate.11 They have not experienced the same survival gains seen in White patients.
Some research suggests that these disparities may be more related to socioeconomic status as opposed to race. One analysis of 562 patients found that those with higher socioeconomic status had a median overall survival of 62.8 months compared with 53.7 and 48.6 months for middle and low socioeconomic status (P = 0.015).12
After controlling for confounders including race, patients with low socioeconomic status had a 54% increase in mortality rate relative to those with high status. The authors then performed a similar analysis of 45,505 patients with multiple myeloma from the S
“In some homogeneous health systems, such as the VA, we are seeing that Black patients do as well or better than White patients,” said Catherine Marinac, PhD, an assistant professor of medicine, Harvard Medical School, Boston. “Survival is equal or better, as long as treatment is not delayed and they receive the standard of care.”
Black patients generally have a more indolent disease subtype and may experience less aggressive disease, but they have not experienced the same magnitude in survival as White patients following the introduction of new therapeutics. This disparity lends support to the influence of socioeconomic factors, such as unequal access to novel therapies and/or differences in treatment response, and lower rates of autologous stem cell transplantation.13
However, there are racial/ethnic differences in risk for both myeloma and its premalignant conditions, as well as incidence. Blacks have a twofold increased risk of myeloma compared with White individuals and are diagnosed at younger ages. Differences in myeloma incidence is less marked in other racial/ethnic groups, such as Hispanics, where it is only slightly higher than in Whites at 6.7 per 100,00.11 In contrast, the incidence of myeloma is markedly lower in Asians as compared with non-Hispanic Whites (incidence rate of 3.8 versus 6.2 per 100,000). Black persons also have a markedly higher prevalence of MGUS, and these differences suggest that biology, and clinical characteristics, differ by race or ancestry.
“Mortality among Black patients is also higher,” said Dr. Marinac, who is also on the faculty in the division of population sciences at the Dana Farber Cancer Institute, also in Boston. “The higher mortality rate is driven by the higher incidence.”
There are also differences in the prevalence of immunoglobulin isotypes observed across racial/ethnic groups of MGUS patients, Dr. Marinac explained, which is consistent with the hypothesis that there is a biological basis for disparities arising in precursor lesions.
“What we are looking at now is cancer prevention and early intervention,” she said. “There are well-defined precursors to myeloma, and Blacks are three times more likely to have a precursor condition.”
Early detection of precursors followed by preventing progression to full-blown multiple myeloma is one way of addressing disparities, but right now, there are no real screening guidelines. “Most patients now are diagnosed incidentally, and then the only intervention is to monitor them,” Dr. Marinac said. “At Dana Farber, we are now looking to see if we can refine screening, and then see who may need additional monitoring.”
The Promise study, being conducted at Dana Farber, is recruiting participants to examine the molecular changes that occur when precursor conditions develop into full-blown multiple myeloma and is open to individuals considered to be at high risk: Black race and/or have a first-degree relative with multiple myeloma or one of its precursor conditions.
Dr. Marinac also pointed out that there are ongoing clinical trials that are looking at low-risk early interventions in patients with precursor conditions. “We are now looking at lifestyle and metformin,” she said. “The thought is that if we treat them now, we can prevent myeloma from developing.”
Lessening barriers to care
When trying to tease out the strongest/most prominent reasons for the disparities that have been observed in the care of patients with blood cancers, Stephanie Lee, M.D., M.P.H, professor and associate director of the clinical research division at Fred Hutchinson Cancer Research Center, Seattle, thinks that the problem is truly multifactorial.
“Access has been cited many times because some studies show that if access is equitable, sometimes racial/ethnic minorities do the same as non-Hispanic Whites,” she said. “Same thing with quality of care – if all people are treated on clinical trials, sometimes the outcomes are the same.”
That said, many things have to go right to get the best outcomes, and if one factor isn’t optimal, then treatment may never achieve the success that is possible, she noted.
Considering how complex the issue of disparities is, addressing it can seem daunting. Dr. Lee points out that the place to begin is with clinical trials. “I would like to see more studies that test interventions to correct disparities,” said Dr. Lee. “But I have actually seen in my own work that racial and ethnic minorities are less likely to participate in studies, even survey and observational studies where physical risks are low or nonexistent.”
People are studying how to increase minority participation in clinical trials, but thus far, there isn’t one solution. “As with routine care, there are probably a lot of logistical barriers to trial participation that disproportionately affect minority populations,” she noted. “There is also greater distrust of studies.”
But for now, there are some steps that clinicians can take to start to improve these disparities. “I think we can start inquiring about and documenting barriers to care and clinical trial participation, just like we document other aspects of the social history,” Dr. Lee explained. “Truly understanding the problem is the first step toward trying to solve it.”
References
1. Leukemia & Lymphoma Society. 2021. www.lls.org/facts-and-statistics/facts-and-statistics-overview.
2. Utuama O et al. PLoS One. 2019 Aug 19;14(8):e0220864.
3. Pollyea DA et al. J Cancer Prev Curr Res. 2014;1(1):14-19.
4. Bencomo-Alvarez AE et al. Cancer. 2021 Apr 1;127(7):1068-79.
5. Nabhan C et al. Cancer. 2012 Oct 1;118(19):4842-50.
6. Bhatnagar B et al. Blood. 2020;136(Suppl 1):5-7.
7. Shenoy PJ et al. Cancer. 2011;117:2530-40.
8. Evens AM et al. Ann Oncol. 2012 Aug 1;23(8):2128-37.
9. Lee MJ et al. Cancer. 2020;126:3493-3503.
10. Hu B et al. Cancer. 2021 Jul 21. doi: 10.1002/cncr.33779.
11. Marinac CR et al. Blood Cancer J. 2020 Feb 17;10(2):19.
12. Fiala MA et al. Leuk Lymphoma. 2015;56(9):2643-9.
13. Costa LJ et al. Biol Blood Marrow Transplant. 2015 Apr;21(4):701-6.
As compared with White individuals, minorities often face higher barriers to cancer care. Racial and ethnic disparities in patients with solid tumors, particularly those of the prostate and breast, have been well documented. Hematologic malignancies are less common, but an increasing number of studies have documented disparities within this subgroup of cancer, particularly among Black and non-White Hispanics. An increasing armamentarium of therapeutics, including novel chemotherapy agents and targeted molecular, cellular, and immunologic therapies, has highlighted the need for understanding and exploring the differences in care as well as biology, which may lead to disparate outcomes.
Overall, an estimated 186,400 people living in the United States are expected to be diagnosed with leukemia, lymphoma, or myeloma in 2021, and new cases of hematologic malignancies are expected to account for 9.8% of the estimated 1,898,160 new cancer cases diagnosed this year.1
The underlying reasons for disparities are highly complex and multifactorial, and clinicians must consider how the biologic, clinical, demographic, and socioeconomic characteristics of their patients interact. All of these factors can play a role in prognosis and/or access to care.
Disparities in leukemia
Leukemia is a heterogeneous group of diseases affecting both children and adults, but during the past few decades survival rates have steadily improved, particularly among children. Response to therapy and prognosis do vary among leukemia types, but one large analysis reported that there were overall improvements in survival seen across racial/ethnic groups, most age groups, and genders during a 40-year period.2
From 1973 through 2014, survival trends were assessed across four leukemia types: acute lymphoblastic leukemia (ALL), acute myeloid leukemia (AML), chronic myeloid leukemia (CML), and chronic lymphoid leukemia (CLL). After stratifying survival for each leukemia type by race/ethnicity, improvement rates were not uniform among all groups.
For example, there were substantial improvements of leukemia-specific survival in 2010-2014 among Black (81.0%) and Asian (80.0%) patients with CML, as well as younger patients (20-49 years) with CLL (96.0%). But in contrast, Black patients, those with AML, and individuals over the age of 75 years experienced the lowest improvement in survival.
Studies have found that Hispanics have increased rates of ALL and acute promyelocytic leukemia (APL), but lower rates of AML, as compared to Whites. They also tend to be diagnosed at a younger age and have poorer overall survival.3
Demographics may also play a role, as Hispanics born outside the United States had a higher incidence rate of APL versus U.S.-born Hispanics (incidence rate ratio, 1.79; 1.11-2.94). Thus, the higher incidence rates of increased B-cell ALL may be due to heritable genetic factors, while APL may also be attributable to environmental exposures.4
Hispanics living on the Texas-Mexico border were also found to have a higher incidence of chronic myeloid leukemia (RR, 1.28; 95% CI, 1.07-1.51; P = .02) and acute myeloid leukemia (RR, 1.17; 95% CI, 1.04-1.33; P = .0009) as compared with Hispanics living elsewhere in Texas5 AML and CML were more likely to be observed in patients who resided in this border region, and those with ALL, AML, and CML had worse outcomes compared with Hispanics living elsewhere in Texas. In addition, both Hispanic and non-Hispanic patients along the border have a worse prognosis for ALL than patients in other areas of Texas.
“We don’t yet understand if the differences are due to nonbiologic factors, or if biology plays a role because of the more aggressive disease that we’re seeing,” said study author Anna Eiring, PhD, an assistant professor at Texas Tech University, El Paso. “This is a medically underserved region, and even though we are a safety net hospital, many of the Hispanic patients don’t have health insurance.”
They also tend to have worse socioeconomic status compared with non-Hispanic populations, and there may also be lifestyle and environmental factors. “Exposure to environmental toxins may also play a role, as many work in jobs that could put them at risk,” she said. “Lifestyle factors may also play a role.”
AML is a hematopoietic disorder that is characterized by numerous cytogenetic and molecular aberrations, with poor overall survival. Researchers found that Black patients had shorter survival than White patients, based on an analysis of Surveillance Epidemiology and End Results (SEER) Program data, and performing and performed mutational profiling of 1,339 patients with AML treated on frontline Alliance for Clinical Trials in Oncology (Alliance) protocols.6 The disparity was especially pronounced in Black patients under 60 years old, after adjustment for socioeconomic (SEER) and molecular (Alliance) factors. Black race was an independent prognosticator of poor survival.
“Based on our analyses in Black and White AML patients under the age of 60 years, we believe that a differential impact of molecular aberrations, specifically AML-associated gene mutations, contribute to the observed survival disparities,” said study author Ann-Kathrin Eisfeld, MD, an assistant professor in the division of hematology at the Ohio State University, Columbus, and a member of the leukemia research program at the university’s comprehensive cancer center, the James. “For example, NPM1 mutations seem to lack the known positive prognostic impact we are used to seeing in previous studies with White AML patients.”
She noted that when looking at molecular prognosticators just within Black AML patients, researchers found that FLT3-ITD and also IDH2 mutations were associated with poor overall survival. “While FLT3-ITD is a known adverse prognosticator, the significant impact of IDH2 mutations was surprising to us and is currently being further explored,” said Dr. Eisfeld.
“In general, however, it can’t be highlighted enough that while this study suggests an impact of somatic tumor genomics that needs a lot more attention and investigation and ideally, also prospective studies, structural racism and its impact is still the problem,” she emphasized. “It’s the ‘elephant in the room’ and the major factor that needs to be addressed in order to improve and overcome these survival disparities.”
Disparities in lymphoma
Similar to leukemia, lymphomas are a heterogenous and diverse group of malignancies that range from indolent to highly aggressive. The two main types are listed below:
Non-Hodgkin lymphoma (NHL), the most common subtype, with about 80,000 new cases a year in the United States. There are more than 90 types of NHL, the most common being B-cell lymphomas, which include diffuse large B cell, primary mediastinal B cell, follicular, small lymphocytic lymphoma, and chronic lymphocytic leukemia; marginal zone, mantle zone, and Burkitt lymphomas; and Waldenström macroglobulinemia.
Hodgkin lymphoma (HL), less common than NHL, with about 9,000 people diagnosed every year. There are five types of HL, and it is primarily seen in children and young adults.
Disparities in incidence, age at diagnosis, and overall survival have been observed in lymphoma, which, aside from marginal zone and follicular lymphoma, are more common among men. The incidence of most lymphoma subtypes is generally lower in racial and ethnic minority groups, although Black and Hispanic patients tend to be diagnosed at a younger age, and in Black patients, at a more advanced stage and the lymphomas have higher risk features at initial presentation.7
One study that looked at racial disparities in Hodgkin lymphoma found that HL was significantly more common in Hispanics versus Whites under the age of 65 years. The 5-, 10-, and 15-year overall survival rates were also inferior for Blacks and Hispanics compared with Whites (P less than 0.005 and P less than 0.001, respectively).8
Diffuse large B-cell lymphoma (DLBCL) is the most common subtype of non-Hodgkin lymphoma in the United States, comprising approximately one-third of lymphomas diagnosed in adults (Lee et al. 2020). In one study that examined ancestry and tumor genomics, recurrent somatic mutations in established driver genes, such as ATM, MGA, SETD2, TET2, DNMT3A, and MLL3, were observed more frequently in patients with African ancestry versus those of European ancestry.9 Other data suggest a variety of disparities in receipt of treatment. For example, patients with localized disease who were Black, uninsured/Medicaid insured, or of lower socioeconomic status were less likely to receive any form of chemotherapy (all P less than 0.0001), and Black race was also associated with being less likely to receive chemoimmunotherapy.
Leveling the field of disparities is complex and requires a multifaceted approach. But one facility found that they could help minority patients overcome some of the hurdles related to nonbiologic factors by the support of a nurse navigator in addition to therapy.10 Their study included 204 patients with DLBCL (47 minority patients and 157 White patients) and following the initiation of the nurse navigator program, virtually all patients received frontline chemotherapy (98% versus 96%). The incidence of relapsed/refractory disease was similar (40% versus 38%) and in the relapsed/refractory population, similar proportions of patients underwent hematopoietic stem cell transplantation (32% versus 29%) or received chimeric antigen receptor T-cell therapy (16% versus 19%). The 2-year overall survival rates were 81% and 76% for minorities and Whites, respectively, and 2-year progression-free survival rates were 62% and 65%, respectively.
“We found that the minority patients often needed more help to get care, and they utilized the nurse navigator more intensively,” said study author Bei Hu, MD, who is with the department of hematologic oncology and blood disorders, Levine Cancer Institute/Atrium Health, Charlotte, N.C. “The nurse navigator was able to help them with things like finances, transportation, and insurance.”
Minorities tended to face more barriers than White patients. “Even something as simple as needing money for gas to get to the clinic can be a barrier to care,” said Dr. Hu. “And many of the patients are often uncomfortable discussing these things with their physician – plus a lot is covered in our appointments and we focus on the cancer. So, they may be more comfortable discussing these issues with the nurse.”
Disparities in multiple myeloma
Multiple myeloma is the malignant clonal proliferation of plasma B cells in the bone marrow and, despite the advent of new therapies, remains incurable and generally fatal. It progresses from the more common but often subclinical precursor states of monoclonal gammopathy of undetermined significance (MGUS) and smoldering multiple myeloma (SMM) to overt and symptomatic multiple myeloma. Racial disparities have been observed in all stages of the disease, and as compared with Whites, individuals who are Black have a higher risk of MGUS and myeloma and a higher mortality rate.11 They have not experienced the same survival gains seen in White patients.
Some research suggests that these disparities may be more related to socioeconomic status as opposed to race. One analysis of 562 patients found that those with higher socioeconomic status had a median overall survival of 62.8 months compared with 53.7 and 48.6 months for middle and low socioeconomic status (P = 0.015).12
After controlling for confounders including race, patients with low socioeconomic status had a 54% increase in mortality rate relative to those with high status. The authors then performed a similar analysis of 45,505 patients with multiple myeloma from the S
“In some homogeneous health systems, such as the VA, we are seeing that Black patients do as well or better than White patients,” said Catherine Marinac, PhD, an assistant professor of medicine, Harvard Medical School, Boston. “Survival is equal or better, as long as treatment is not delayed and they receive the standard of care.”
Black patients generally have a more indolent disease subtype and may experience less aggressive disease, but they have not experienced the same magnitude in survival as White patients following the introduction of new therapeutics. This disparity lends support to the influence of socioeconomic factors, such as unequal access to novel therapies and/or differences in treatment response, and lower rates of autologous stem cell transplantation.13
However, there are racial/ethnic differences in risk for both myeloma and its premalignant conditions, as well as incidence. Blacks have a twofold increased risk of myeloma compared with White individuals and are diagnosed at younger ages. Differences in myeloma incidence is less marked in other racial/ethnic groups, such as Hispanics, where it is only slightly higher than in Whites at 6.7 per 100,00.11 In contrast, the incidence of myeloma is markedly lower in Asians as compared with non-Hispanic Whites (incidence rate of 3.8 versus 6.2 per 100,000). Black persons also have a markedly higher prevalence of MGUS, and these differences suggest that biology, and clinical characteristics, differ by race or ancestry.
“Mortality among Black patients is also higher,” said Dr. Marinac, who is also on the faculty in the division of population sciences at the Dana Farber Cancer Institute, also in Boston. “The higher mortality rate is driven by the higher incidence.”
There are also differences in the prevalence of immunoglobulin isotypes observed across racial/ethnic groups of MGUS patients, Dr. Marinac explained, which is consistent with the hypothesis that there is a biological basis for disparities arising in precursor lesions.
“What we are looking at now is cancer prevention and early intervention,” she said. “There are well-defined precursors to myeloma, and Blacks are three times more likely to have a precursor condition.”
Early detection of precursors followed by preventing progression to full-blown multiple myeloma is one way of addressing disparities, but right now, there are no real screening guidelines. “Most patients now are diagnosed incidentally, and then the only intervention is to monitor them,” Dr. Marinac said. “At Dana Farber, we are now looking to see if we can refine screening, and then see who may need additional monitoring.”
The Promise study, being conducted at Dana Farber, is recruiting participants to examine the molecular changes that occur when precursor conditions develop into full-blown multiple myeloma and is open to individuals considered to be at high risk: Black race and/or have a first-degree relative with multiple myeloma or one of its precursor conditions.
Dr. Marinac also pointed out that there are ongoing clinical trials that are looking at low-risk early interventions in patients with precursor conditions. “We are now looking at lifestyle and metformin,” she said. “The thought is that if we treat them now, we can prevent myeloma from developing.”
Lessening barriers to care
When trying to tease out the strongest/most prominent reasons for the disparities that have been observed in the care of patients with blood cancers, Stephanie Lee, M.D., M.P.H, professor and associate director of the clinical research division at Fred Hutchinson Cancer Research Center, Seattle, thinks that the problem is truly multifactorial.
“Access has been cited many times because some studies show that if access is equitable, sometimes racial/ethnic minorities do the same as non-Hispanic Whites,” she said. “Same thing with quality of care – if all people are treated on clinical trials, sometimes the outcomes are the same.”
That said, many things have to go right to get the best outcomes, and if one factor isn’t optimal, then treatment may never achieve the success that is possible, she noted.
Considering how complex the issue of disparities is, addressing it can seem daunting. Dr. Lee points out that the place to begin is with clinical trials. “I would like to see more studies that test interventions to correct disparities,” said Dr. Lee. “But I have actually seen in my own work that racial and ethnic minorities are less likely to participate in studies, even survey and observational studies where physical risks are low or nonexistent.”
People are studying how to increase minority participation in clinical trials, but thus far, there isn’t one solution. “As with routine care, there are probably a lot of logistical barriers to trial participation that disproportionately affect minority populations,” she noted. “There is also greater distrust of studies.”
But for now, there are some steps that clinicians can take to start to improve these disparities. “I think we can start inquiring about and documenting barriers to care and clinical trial participation, just like we document other aspects of the social history,” Dr. Lee explained. “Truly understanding the problem is the first step toward trying to solve it.”
References
1. Leukemia & Lymphoma Society. 2021. www.lls.org/facts-and-statistics/facts-and-statistics-overview.
2. Utuama O et al. PLoS One. 2019 Aug 19;14(8):e0220864.
3. Pollyea DA et al. J Cancer Prev Curr Res. 2014;1(1):14-19.
4. Bencomo-Alvarez AE et al. Cancer. 2021 Apr 1;127(7):1068-79.
5. Nabhan C et al. Cancer. 2012 Oct 1;118(19):4842-50.
6. Bhatnagar B et al. Blood. 2020;136(Suppl 1):5-7.
7. Shenoy PJ et al. Cancer. 2011;117:2530-40.
8. Evens AM et al. Ann Oncol. 2012 Aug 1;23(8):2128-37.
9. Lee MJ et al. Cancer. 2020;126:3493-3503.
10. Hu B et al. Cancer. 2021 Jul 21. doi: 10.1002/cncr.33779.
11. Marinac CR et al. Blood Cancer J. 2020 Feb 17;10(2):19.
12. Fiala MA et al. Leuk Lymphoma. 2015;56(9):2643-9.
13. Costa LJ et al. Biol Blood Marrow Transplant. 2015 Apr;21(4):701-6.
As compared with White individuals, minorities often face higher barriers to cancer care. Racial and ethnic disparities in patients with solid tumors, particularly those of the prostate and breast, have been well documented. Hematologic malignancies are less common, but an increasing number of studies have documented disparities within this subgroup of cancer, particularly among Black and non-White Hispanics. An increasing armamentarium of therapeutics, including novel chemotherapy agents and targeted molecular, cellular, and immunologic therapies, has highlighted the need for understanding and exploring the differences in care as well as biology, which may lead to disparate outcomes.
Overall, an estimated 186,400 people living in the United States are expected to be diagnosed with leukemia, lymphoma, or myeloma in 2021, and new cases of hematologic malignancies are expected to account for 9.8% of the estimated 1,898,160 new cancer cases diagnosed this year.1
The underlying reasons for disparities are highly complex and multifactorial, and clinicians must consider how the biologic, clinical, demographic, and socioeconomic characteristics of their patients interact. All of these factors can play a role in prognosis and/or access to care.
Disparities in leukemia
Leukemia is a heterogeneous group of diseases affecting both children and adults, but during the past few decades survival rates have steadily improved, particularly among children. Response to therapy and prognosis do vary among leukemia types, but one large analysis reported that there were overall improvements in survival seen across racial/ethnic groups, most age groups, and genders during a 40-year period.2
From 1973 through 2014, survival trends were assessed across four leukemia types: acute lymphoblastic leukemia (ALL), acute myeloid leukemia (AML), chronic myeloid leukemia (CML), and chronic lymphoid leukemia (CLL). After stratifying survival for each leukemia type by race/ethnicity, improvement rates were not uniform among all groups.
For example, there were substantial improvements of leukemia-specific survival in 2010-2014 among Black (81.0%) and Asian (80.0%) patients with CML, as well as younger patients (20-49 years) with CLL (96.0%). But in contrast, Black patients, those with AML, and individuals over the age of 75 years experienced the lowest improvement in survival.
Studies have found that Hispanics have increased rates of ALL and acute promyelocytic leukemia (APL), but lower rates of AML, as compared to Whites. They also tend to be diagnosed at a younger age and have poorer overall survival.3
Demographics may also play a role, as Hispanics born outside the United States had a higher incidence rate of APL versus U.S.-born Hispanics (incidence rate ratio, 1.79; 1.11-2.94). Thus, the higher incidence rates of increased B-cell ALL may be due to heritable genetic factors, while APL may also be attributable to environmental exposures.4
Hispanics living on the Texas-Mexico border were also found to have a higher incidence of chronic myeloid leukemia (RR, 1.28; 95% CI, 1.07-1.51; P = .02) and acute myeloid leukemia (RR, 1.17; 95% CI, 1.04-1.33; P = .0009) as compared with Hispanics living elsewhere in Texas5 AML and CML were more likely to be observed in patients who resided in this border region, and those with ALL, AML, and CML had worse outcomes compared with Hispanics living elsewhere in Texas. In addition, both Hispanic and non-Hispanic patients along the border have a worse prognosis for ALL than patients in other areas of Texas.
“We don’t yet understand if the differences are due to nonbiologic factors, or if biology plays a role because of the more aggressive disease that we’re seeing,” said study author Anna Eiring, PhD, an assistant professor at Texas Tech University, El Paso. “This is a medically underserved region, and even though we are a safety net hospital, many of the Hispanic patients don’t have health insurance.”
They also tend to have worse socioeconomic status compared with non-Hispanic populations, and there may also be lifestyle and environmental factors. “Exposure to environmental toxins may also play a role, as many work in jobs that could put them at risk,” she said. “Lifestyle factors may also play a role.”
AML is a hematopoietic disorder that is characterized by numerous cytogenetic and molecular aberrations, with poor overall survival. Researchers found that Black patients had shorter survival than White patients, based on an analysis of Surveillance Epidemiology and End Results (SEER) Program data, and performing and performed mutational profiling of 1,339 patients with AML treated on frontline Alliance for Clinical Trials in Oncology (Alliance) protocols.6 The disparity was especially pronounced in Black patients under 60 years old, after adjustment for socioeconomic (SEER) and molecular (Alliance) factors. Black race was an independent prognosticator of poor survival.
“Based on our analyses in Black and White AML patients under the age of 60 years, we believe that a differential impact of molecular aberrations, specifically AML-associated gene mutations, contribute to the observed survival disparities,” said study author Ann-Kathrin Eisfeld, MD, an assistant professor in the division of hematology at the Ohio State University, Columbus, and a member of the leukemia research program at the university’s comprehensive cancer center, the James. “For example, NPM1 mutations seem to lack the known positive prognostic impact we are used to seeing in previous studies with White AML patients.”
She noted that when looking at molecular prognosticators just within Black AML patients, researchers found that FLT3-ITD and also IDH2 mutations were associated with poor overall survival. “While FLT3-ITD is a known adverse prognosticator, the significant impact of IDH2 mutations was surprising to us and is currently being further explored,” said Dr. Eisfeld.
“In general, however, it can’t be highlighted enough that while this study suggests an impact of somatic tumor genomics that needs a lot more attention and investigation and ideally, also prospective studies, structural racism and its impact is still the problem,” she emphasized. “It’s the ‘elephant in the room’ and the major factor that needs to be addressed in order to improve and overcome these survival disparities.”
Disparities in lymphoma
Similar to leukemia, lymphomas are a heterogenous and diverse group of malignancies that range from indolent to highly aggressive. The two main types are listed below:
Non-Hodgkin lymphoma (NHL), the most common subtype, with about 80,000 new cases a year in the United States. There are more than 90 types of NHL, the most common being B-cell lymphomas, which include diffuse large B cell, primary mediastinal B cell, follicular, small lymphocytic lymphoma, and chronic lymphocytic leukemia; marginal zone, mantle zone, and Burkitt lymphomas; and Waldenström macroglobulinemia.
Hodgkin lymphoma (HL), less common than NHL, with about 9,000 people diagnosed every year. There are five types of HL, and it is primarily seen in children and young adults.
Disparities in incidence, age at diagnosis, and overall survival have been observed in lymphoma, which, aside from marginal zone and follicular lymphoma, are more common among men. The incidence of most lymphoma subtypes is generally lower in racial and ethnic minority groups, although Black and Hispanic patients tend to be diagnosed at a younger age, and in Black patients, at a more advanced stage and the lymphomas have higher risk features at initial presentation.7
One study that looked at racial disparities in Hodgkin lymphoma found that HL was significantly more common in Hispanics versus Whites under the age of 65 years. The 5-, 10-, and 15-year overall survival rates were also inferior for Blacks and Hispanics compared with Whites (P less than 0.005 and P less than 0.001, respectively).8
Diffuse large B-cell lymphoma (DLBCL) is the most common subtype of non-Hodgkin lymphoma in the United States, comprising approximately one-third of lymphomas diagnosed in adults (Lee et al. 2020). In one study that examined ancestry and tumor genomics, recurrent somatic mutations in established driver genes, such as ATM, MGA, SETD2, TET2, DNMT3A, and MLL3, were observed more frequently in patients with African ancestry versus those of European ancestry.9 Other data suggest a variety of disparities in receipt of treatment. For example, patients with localized disease who were Black, uninsured/Medicaid insured, or of lower socioeconomic status were less likely to receive any form of chemotherapy (all P less than 0.0001), and Black race was also associated with being less likely to receive chemoimmunotherapy.
Leveling the field of disparities is complex and requires a multifaceted approach. But one facility found that they could help minority patients overcome some of the hurdles related to nonbiologic factors by the support of a nurse navigator in addition to therapy.10 Their study included 204 patients with DLBCL (47 minority patients and 157 White patients) and following the initiation of the nurse navigator program, virtually all patients received frontline chemotherapy (98% versus 96%). The incidence of relapsed/refractory disease was similar (40% versus 38%) and in the relapsed/refractory population, similar proportions of patients underwent hematopoietic stem cell transplantation (32% versus 29%) or received chimeric antigen receptor T-cell therapy (16% versus 19%). The 2-year overall survival rates were 81% and 76% for minorities and Whites, respectively, and 2-year progression-free survival rates were 62% and 65%, respectively.
“We found that the minority patients often needed more help to get care, and they utilized the nurse navigator more intensively,” said study author Bei Hu, MD, who is with the department of hematologic oncology and blood disorders, Levine Cancer Institute/Atrium Health, Charlotte, N.C. “The nurse navigator was able to help them with things like finances, transportation, and insurance.”
Minorities tended to face more barriers than White patients. “Even something as simple as needing money for gas to get to the clinic can be a barrier to care,” said Dr. Hu. “And many of the patients are often uncomfortable discussing these things with their physician – plus a lot is covered in our appointments and we focus on the cancer. So, they may be more comfortable discussing these issues with the nurse.”
Disparities in multiple myeloma
Multiple myeloma is the malignant clonal proliferation of plasma B cells in the bone marrow and, despite the advent of new therapies, remains incurable and generally fatal. It progresses from the more common but often subclinical precursor states of monoclonal gammopathy of undetermined significance (MGUS) and smoldering multiple myeloma (SMM) to overt and symptomatic multiple myeloma. Racial disparities have been observed in all stages of the disease, and as compared with Whites, individuals who are Black have a higher risk of MGUS and myeloma and a higher mortality rate.11 They have not experienced the same survival gains seen in White patients.
Some research suggests that these disparities may be more related to socioeconomic status as opposed to race. One analysis of 562 patients found that those with higher socioeconomic status had a median overall survival of 62.8 months compared with 53.7 and 48.6 months for middle and low socioeconomic status (P = 0.015).12
After controlling for confounders including race, patients with low socioeconomic status had a 54% increase in mortality rate relative to those with high status. The authors then performed a similar analysis of 45,505 patients with multiple myeloma from the S
“In some homogeneous health systems, such as the VA, we are seeing that Black patients do as well or better than White patients,” said Catherine Marinac, PhD, an assistant professor of medicine, Harvard Medical School, Boston. “Survival is equal or better, as long as treatment is not delayed and they receive the standard of care.”
Black patients generally have a more indolent disease subtype and may experience less aggressive disease, but they have not experienced the same magnitude in survival as White patients following the introduction of new therapeutics. This disparity lends support to the influence of socioeconomic factors, such as unequal access to novel therapies and/or differences in treatment response, and lower rates of autologous stem cell transplantation.13
However, there are racial/ethnic differences in risk for both myeloma and its premalignant conditions, as well as incidence. Blacks have a twofold increased risk of myeloma compared with White individuals and are diagnosed at younger ages. Differences in myeloma incidence is less marked in other racial/ethnic groups, such as Hispanics, where it is only slightly higher than in Whites at 6.7 per 100,00.11 In contrast, the incidence of myeloma is markedly lower in Asians as compared with non-Hispanic Whites (incidence rate of 3.8 versus 6.2 per 100,000). Black persons also have a markedly higher prevalence of MGUS, and these differences suggest that biology, and clinical characteristics, differ by race or ancestry.
“Mortality among Black patients is also higher,” said Dr. Marinac, who is also on the faculty in the division of population sciences at the Dana Farber Cancer Institute, also in Boston. “The higher mortality rate is driven by the higher incidence.”
There are also differences in the prevalence of immunoglobulin isotypes observed across racial/ethnic groups of MGUS patients, Dr. Marinac explained, which is consistent with the hypothesis that there is a biological basis for disparities arising in precursor lesions.
“What we are looking at now is cancer prevention and early intervention,” she said. “There are well-defined precursors to myeloma, and Blacks are three times more likely to have a precursor condition.”
Early detection of precursors followed by preventing progression to full-blown multiple myeloma is one way of addressing disparities, but right now, there are no real screening guidelines. “Most patients now are diagnosed incidentally, and then the only intervention is to monitor them,” Dr. Marinac said. “At Dana Farber, we are now looking to see if we can refine screening, and then see who may need additional monitoring.”
The Promise study, being conducted at Dana Farber, is recruiting participants to examine the molecular changes that occur when precursor conditions develop into full-blown multiple myeloma and is open to individuals considered to be at high risk: Black race and/or have a first-degree relative with multiple myeloma or one of its precursor conditions.
Dr. Marinac also pointed out that there are ongoing clinical trials that are looking at low-risk early interventions in patients with precursor conditions. “We are now looking at lifestyle and metformin,” she said. “The thought is that if we treat them now, we can prevent myeloma from developing.”
Lessening barriers to care
When trying to tease out the strongest/most prominent reasons for the disparities that have been observed in the care of patients with blood cancers, Stephanie Lee, M.D., M.P.H, professor and associate director of the clinical research division at Fred Hutchinson Cancer Research Center, Seattle, thinks that the problem is truly multifactorial.
“Access has been cited many times because some studies show that if access is equitable, sometimes racial/ethnic minorities do the same as non-Hispanic Whites,” she said. “Same thing with quality of care – if all people are treated on clinical trials, sometimes the outcomes are the same.”
That said, many things have to go right to get the best outcomes, and if one factor isn’t optimal, then treatment may never achieve the success that is possible, she noted.
Considering how complex the issue of disparities is, addressing it can seem daunting. Dr. Lee points out that the place to begin is with clinical trials. “I would like to see more studies that test interventions to correct disparities,” said Dr. Lee. “But I have actually seen in my own work that racial and ethnic minorities are less likely to participate in studies, even survey and observational studies where physical risks are low or nonexistent.”
People are studying how to increase minority participation in clinical trials, but thus far, there isn’t one solution. “As with routine care, there are probably a lot of logistical barriers to trial participation that disproportionately affect minority populations,” she noted. “There is also greater distrust of studies.”
But for now, there are some steps that clinicians can take to start to improve these disparities. “I think we can start inquiring about and documenting barriers to care and clinical trial participation, just like we document other aspects of the social history,” Dr. Lee explained. “Truly understanding the problem is the first step toward trying to solve it.”
References
1. Leukemia & Lymphoma Society. 2021. www.lls.org/facts-and-statistics/facts-and-statistics-overview.
2. Utuama O et al. PLoS One. 2019 Aug 19;14(8):e0220864.
3. Pollyea DA et al. J Cancer Prev Curr Res. 2014;1(1):14-19.
4. Bencomo-Alvarez AE et al. Cancer. 2021 Apr 1;127(7):1068-79.
5. Nabhan C et al. Cancer. 2012 Oct 1;118(19):4842-50.
6. Bhatnagar B et al. Blood. 2020;136(Suppl 1):5-7.
7. Shenoy PJ et al. Cancer. 2011;117:2530-40.
8. Evens AM et al. Ann Oncol. 2012 Aug 1;23(8):2128-37.
9. Lee MJ et al. Cancer. 2020;126:3493-3503.
10. Hu B et al. Cancer. 2021 Jul 21. doi: 10.1002/cncr.33779.
11. Marinac CR et al. Blood Cancer J. 2020 Feb 17;10(2):19.
12. Fiala MA et al. Leuk Lymphoma. 2015;56(9):2643-9.
13. Costa LJ et al. Biol Blood Marrow Transplant. 2015 Apr;21(4):701-6.
NORD: Approaching rare cancers through a diversity lens
The National Organization for Rare Disorders (NORD® ) advocates for all rare disease patients, no matter their race, ethnicity, religion, color, national origin, age, disability, sexual orientation, gender identity, etc. Since its inception in 1983, NORD has advocated for marginalized individuals – people living with rare diseases, diagnosed and undiagnosed – who were excluded from conventional clinical care, research, and drug development.
People living with rare diseases often experience a long and arduous journey to diagnosis, due to a dearth of information in medical textbooks, lack of knowledge in the clinical setting, lack of research, and lack of FDA-approved treatments. Furthermore, a substantial amount of research has shown inequity in access to and quality of health care for marginalized groups, especially Black, Brown, indigenous and people of color (BIPOC). The barriers to be accurately diagnosed and provided quality care by specialists already poses threats to quality and length of life of the community at large, but the additional barriers faced by BIPOC communities have deadly consequences due to the lack of access to culturally proficient health care and access to rare disease specialists, in addition to socioeconomic considerations (i.e., insurance access and medical literacy).
In addition to further delayed diagnosis and inequities in care, people of color are consistently underrepresented in clinical trials and registries, resulting in a lack of diversity in clinical studies and some mystery in how effective therapies will be across diverse populations of patients. Because many rare diseases are genetic and certain genetic conditions disproportionately affect communities of color, having a vast majority of white participants creates significant knowledge gaps that can affect patient care and drug development and effectiveness.
Unfortunately, when looking at the rare cancer population within the rare disease community, the same problems persist. Of the approximately 7,000 known rare diseases, 1 more than 500 are rare cancers, 2 and combined, all rare cancers account for slightly more than one out of ever four cancer diagnoses each year and one out of every four cancer-related deaths. 3 Black people have the highest death rate and shortest survival of any racial/ethnic group in the U.S. for most cancers, and Black men have the highest cancer incidence rate. 4 NORD and the NORD Rare Cancer Coalition™, including 27 rare cancer member organizations, are committed to shining a light on the causes of these inequities for rare cancer patients, including but not limited to systemic racism, economic disparities, cultural differences, and issues concerning access to quality health care and inclusive research.
To raise awareness of rare cancers and the issues rare cancer patients face throughout the diagnostic odyssey, in seeking and receiving specialized care and in advocating for awareness, and increased research and drug development, NORD and the NORD Rare Cancer Coalition spearheaded Rare Cancer Day, observed annually on September 30. Through the universal hashtag campaign #RareCancerDay and our social media toolkit of infographics and messaging, NORD brings together the global community of advocates to promote awareness of rare cancers and provide opportunities to educate patients, caregivers, clinicians, and researchers. NORD hosted a free webinar for the rare disease community, Rare Cancers: Breaking Down Barriers to Diagnosis, Treatment and Research, to explore rare cancer challenges and offer insights to assist those who are impacted. Throughout August and September, NORD highlighted the powerful, important, and inspiring stories of the rare cancer community on the NORD blog.
In addition, the 2021 NORD Rare Diseases + Orphan Products Breakthrough Summit, held October 18 and 19, featured a breakout session and a follow-up discussion group on Advancing Rare Cancer Awareness & Education Among Healthcare Professionals. These sessions explored educational gaps and approaches for increasing awareness and delivering quality education for healthcare professionals in optimizing care for rare cancer patients, genomic testing, personalized medicine, and collaboration with researchers and patient advocacy groups.
This issue of Rare Diseases Report: Cancers helps us further our mission to foster the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services, as well as the work of NORD’s Rare Cancer Coalition™ which aims to unite NORD member organizations working in rare cancers to collaborate on issues facing the greater rare cancer community.
NORD remains steadfastly committed to advocating for all rare disease patients, no matter their race, ethnicity, religion, color, national origin, age, disability, sexual orientation, gender identity, parental status, marital status, political affiliation, gender expression, mental illness, socioeconomic status or background, neuro(a)typicality, or physical appearance. NORD’s work includes advocating for rare cancer patients, raising awareness of rare cancer patients, sharing the stories of people living with rare cancers, and educating patients, caregivers and healthcare professionals about accurate diagnosis, quality care, advancements in research, and available treatment options. Learn more at rarediseases.org.
Rebecca Aune
Director of Education Programs
Debbie Drell
Director of Membership
References
1. Genetic and Rare Diseases Information Center; National Center for Advancing Translational Sciences; FAQs About Rare Diseases; 11/30/2017. https://rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases
2. Genetic and Rare Diseases Information Center; National Center for Advancing Translational Sciences; Rare Cancers; 1/25/2019. https://www.youtube.com/watch?v=ES5KylRT1qY, https://rarediseases.info.nih.gov/diseases/diseases-by-category/1/rare-cancers, or https://rarediseases.info.nih.gov/diseases/diseases-by-category/1/rare-cancers
3. NIH National Cancer Institute. Rare Cancer Statistics | Did You Know? [Video]. Youtube. https://www.youtube.com/watch?v=ES5KylRT1qY&t=155s. Published April 5, 2018. Accessed Oct. 20, 2021.
4. American Cancer Society. Cancer Facts; Figures for African Americans 2019-2021. Atlanta: American Cancer Society, 2019. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/cancer-facts-and-figures-for-african-americans/cancer-facts-and-figures-for-african-americans-2019-2021.pdf1.
The National Organization for Rare Disorders (NORD® ) advocates for all rare disease patients, no matter their race, ethnicity, religion, color, national origin, age, disability, sexual orientation, gender identity, etc. Since its inception in 1983, NORD has advocated for marginalized individuals – people living with rare diseases, diagnosed and undiagnosed – who were excluded from conventional clinical care, research, and drug development.
People living with rare diseases often experience a long and arduous journey to diagnosis, due to a dearth of information in medical textbooks, lack of knowledge in the clinical setting, lack of research, and lack of FDA-approved treatments. Furthermore, a substantial amount of research has shown inequity in access to and quality of health care for marginalized groups, especially Black, Brown, indigenous and people of color (BIPOC). The barriers to be accurately diagnosed and provided quality care by specialists already poses threats to quality and length of life of the community at large, but the additional barriers faced by BIPOC communities have deadly consequences due to the lack of access to culturally proficient health care and access to rare disease specialists, in addition to socioeconomic considerations (i.e., insurance access and medical literacy).
In addition to further delayed diagnosis and inequities in care, people of color are consistently underrepresented in clinical trials and registries, resulting in a lack of diversity in clinical studies and some mystery in how effective therapies will be across diverse populations of patients. Because many rare diseases are genetic and certain genetic conditions disproportionately affect communities of color, having a vast majority of white participants creates significant knowledge gaps that can affect patient care and drug development and effectiveness.
Unfortunately, when looking at the rare cancer population within the rare disease community, the same problems persist. Of the approximately 7,000 known rare diseases, 1 more than 500 are rare cancers, 2 and combined, all rare cancers account for slightly more than one out of ever four cancer diagnoses each year and one out of every four cancer-related deaths. 3 Black people have the highest death rate and shortest survival of any racial/ethnic group in the U.S. for most cancers, and Black men have the highest cancer incidence rate. 4 NORD and the NORD Rare Cancer Coalition™, including 27 rare cancer member organizations, are committed to shining a light on the causes of these inequities for rare cancer patients, including but not limited to systemic racism, economic disparities, cultural differences, and issues concerning access to quality health care and inclusive research.
To raise awareness of rare cancers and the issues rare cancer patients face throughout the diagnostic odyssey, in seeking and receiving specialized care and in advocating for awareness, and increased research and drug development, NORD and the NORD Rare Cancer Coalition spearheaded Rare Cancer Day, observed annually on September 30. Through the universal hashtag campaign #RareCancerDay and our social media toolkit of infographics and messaging, NORD brings together the global community of advocates to promote awareness of rare cancers and provide opportunities to educate patients, caregivers, clinicians, and researchers. NORD hosted a free webinar for the rare disease community, Rare Cancers: Breaking Down Barriers to Diagnosis, Treatment and Research, to explore rare cancer challenges and offer insights to assist those who are impacted. Throughout August and September, NORD highlighted the powerful, important, and inspiring stories of the rare cancer community on the NORD blog.
In addition, the 2021 NORD Rare Diseases + Orphan Products Breakthrough Summit, held October 18 and 19, featured a breakout session and a follow-up discussion group on Advancing Rare Cancer Awareness & Education Among Healthcare Professionals. These sessions explored educational gaps and approaches for increasing awareness and delivering quality education for healthcare professionals in optimizing care for rare cancer patients, genomic testing, personalized medicine, and collaboration with researchers and patient advocacy groups.
This issue of Rare Diseases Report: Cancers helps us further our mission to foster the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services, as well as the work of NORD’s Rare Cancer Coalition™ which aims to unite NORD member organizations working in rare cancers to collaborate on issues facing the greater rare cancer community.
NORD remains steadfastly committed to advocating for all rare disease patients, no matter their race, ethnicity, religion, color, national origin, age, disability, sexual orientation, gender identity, parental status, marital status, political affiliation, gender expression, mental illness, socioeconomic status or background, neuro(a)typicality, or physical appearance. NORD’s work includes advocating for rare cancer patients, raising awareness of rare cancer patients, sharing the stories of people living with rare cancers, and educating patients, caregivers and healthcare professionals about accurate diagnosis, quality care, advancements in research, and available treatment options. Learn more at rarediseases.org.
Rebecca Aune
Director of Education Programs
Debbie Drell
Director of Membership
References
1. Genetic and Rare Diseases Information Center; National Center for Advancing Translational Sciences; FAQs About Rare Diseases; 11/30/2017. https://rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases
2. Genetic and Rare Diseases Information Center; National Center for Advancing Translational Sciences; Rare Cancers; 1/25/2019. https://www.youtube.com/watch?v=ES5KylRT1qY, https://rarediseases.info.nih.gov/diseases/diseases-by-category/1/rare-cancers, or https://rarediseases.info.nih.gov/diseases/diseases-by-category/1/rare-cancers
3. NIH National Cancer Institute. Rare Cancer Statistics | Did You Know? [Video]. Youtube. https://www.youtube.com/watch?v=ES5KylRT1qY&t=155s. Published April 5, 2018. Accessed Oct. 20, 2021.
4. American Cancer Society. Cancer Facts; Figures for African Americans 2019-2021. Atlanta: American Cancer Society, 2019. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/cancer-facts-and-figures-for-african-americans/cancer-facts-and-figures-for-african-americans-2019-2021.pdf1.
The National Organization for Rare Disorders (NORD® ) advocates for all rare disease patients, no matter their race, ethnicity, religion, color, national origin, age, disability, sexual orientation, gender identity, etc. Since its inception in 1983, NORD has advocated for marginalized individuals – people living with rare diseases, diagnosed and undiagnosed – who were excluded from conventional clinical care, research, and drug development.
People living with rare diseases often experience a long and arduous journey to diagnosis, due to a dearth of information in medical textbooks, lack of knowledge in the clinical setting, lack of research, and lack of FDA-approved treatments. Furthermore, a substantial amount of research has shown inequity in access to and quality of health care for marginalized groups, especially Black, Brown, indigenous and people of color (BIPOC). The barriers to be accurately diagnosed and provided quality care by specialists already poses threats to quality and length of life of the community at large, but the additional barriers faced by BIPOC communities have deadly consequences due to the lack of access to culturally proficient health care and access to rare disease specialists, in addition to socioeconomic considerations (i.e., insurance access and medical literacy).
In addition to further delayed diagnosis and inequities in care, people of color are consistently underrepresented in clinical trials and registries, resulting in a lack of diversity in clinical studies and some mystery in how effective therapies will be across diverse populations of patients. Because many rare diseases are genetic and certain genetic conditions disproportionately affect communities of color, having a vast majority of white participants creates significant knowledge gaps that can affect patient care and drug development and effectiveness.
Unfortunately, when looking at the rare cancer population within the rare disease community, the same problems persist. Of the approximately 7,000 known rare diseases, 1 more than 500 are rare cancers, 2 and combined, all rare cancers account for slightly more than one out of ever four cancer diagnoses each year and one out of every four cancer-related deaths. 3 Black people have the highest death rate and shortest survival of any racial/ethnic group in the U.S. for most cancers, and Black men have the highest cancer incidence rate. 4 NORD and the NORD Rare Cancer Coalition™, including 27 rare cancer member organizations, are committed to shining a light on the causes of these inequities for rare cancer patients, including but not limited to systemic racism, economic disparities, cultural differences, and issues concerning access to quality health care and inclusive research.
To raise awareness of rare cancers and the issues rare cancer patients face throughout the diagnostic odyssey, in seeking and receiving specialized care and in advocating for awareness, and increased research and drug development, NORD and the NORD Rare Cancer Coalition spearheaded Rare Cancer Day, observed annually on September 30. Through the universal hashtag campaign #RareCancerDay and our social media toolkit of infographics and messaging, NORD brings together the global community of advocates to promote awareness of rare cancers and provide opportunities to educate patients, caregivers, clinicians, and researchers. NORD hosted a free webinar for the rare disease community, Rare Cancers: Breaking Down Barriers to Diagnosis, Treatment and Research, to explore rare cancer challenges and offer insights to assist those who are impacted. Throughout August and September, NORD highlighted the powerful, important, and inspiring stories of the rare cancer community on the NORD blog.
In addition, the 2021 NORD Rare Diseases + Orphan Products Breakthrough Summit, held October 18 and 19, featured a breakout session and a follow-up discussion group on Advancing Rare Cancer Awareness & Education Among Healthcare Professionals. These sessions explored educational gaps and approaches for increasing awareness and delivering quality education for healthcare professionals in optimizing care for rare cancer patients, genomic testing, personalized medicine, and collaboration with researchers and patient advocacy groups.
This issue of Rare Diseases Report: Cancers helps us further our mission to foster the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services, as well as the work of NORD’s Rare Cancer Coalition™ which aims to unite NORD member organizations working in rare cancers to collaborate on issues facing the greater rare cancer community.
NORD remains steadfastly committed to advocating for all rare disease patients, no matter their race, ethnicity, religion, color, national origin, age, disability, sexual orientation, gender identity, parental status, marital status, political affiliation, gender expression, mental illness, socioeconomic status or background, neuro(a)typicality, or physical appearance. NORD’s work includes advocating for rare cancer patients, raising awareness of rare cancer patients, sharing the stories of people living with rare cancers, and educating patients, caregivers and healthcare professionals about accurate diagnosis, quality care, advancements in research, and available treatment options. Learn more at rarediseases.org.
Rebecca Aune
Director of Education Programs
Debbie Drell
Director of Membership
References
1. Genetic and Rare Diseases Information Center; National Center for Advancing Translational Sciences; FAQs About Rare Diseases; 11/30/2017. https://rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases
2. Genetic and Rare Diseases Information Center; National Center for Advancing Translational Sciences; Rare Cancers; 1/25/2019. https://www.youtube.com/watch?v=ES5KylRT1qY, https://rarediseases.info.nih.gov/diseases/diseases-by-category/1/rare-cancers, or https://rarediseases.info.nih.gov/diseases/diseases-by-category/1/rare-cancers
3. NIH National Cancer Institute. Rare Cancer Statistics | Did You Know? [Video]. Youtube. https://www.youtube.com/watch?v=ES5KylRT1qY&t=155s. Published April 5, 2018. Accessed Oct. 20, 2021.
4. American Cancer Society. Cancer Facts; Figures for African Americans 2019-2021. Atlanta: American Cancer Society, 2019. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/cancer-facts-and-figures-for-african-americans/cancer-facts-and-figures-for-african-americans-2019-2021.pdf1.
LGBTQ health care: There is reason to be hopeful
I write a lot about watershed moments in my career, things that proved to be moments of tremendous growth, as a person and as a doctor.
One of these occurred early in my career when I met a new patient with ovarian cancer. When I walked into the exam room, I made eye contact with the woman who was accompanied by a man. I assumed they were married, so I went to her first. I introduced myself, stating that I was here to talk about how best to treat her cancer. She stopped me quickly. “Doctor, I am not the patient,” she said. “He is.”
It was the first time I had cared for a transgender man with ovarian cancer. I recall how awkward the following moments were – for all of us. It was the first time I realized that cancer does not have a gender. Men can get breast cancer. Trans women can get prostate cancer. Trans men can get ovarian cancer.
But even many years later, we are not much further along in how prepared we are as a medical community to care for LGBTQ persons. Lesbian, gay, bisexual, transgender, and queer people are not part of the normal medical school curriculum. For most medical students, LGBTQ health is still approached as an aside – perhaps during an infectious disease clerkship, while learning about STDs and HIV. Students do not learn how to approach the male couple seeking to become parents, STD risk reduction for gays and lesbians, or the trans man with ovarian cancer.
But they should, particularly in light of a 2015 study evaluating bias among U.S. medical students. The analysis found that about 45% of medical students exhibited explicit bias against LGBTQ individuals and 8 in 10 held an implicit bias. Fewer than 20% showed no evidence of bias. This lack of preparedness to treat LGBTQ individuals against a backdrop of bias in the medical community often leads patients to mistrust medicine.
To gain perspective outside of oncology, I spoke to Michelle Forcier (she/they), MD, MPH, assistant dean of admissions and professor of pediatrics at Brown University, Providence, R.I. Dr. Forcier agreed that “LGBTQ/rainbow health has been harmfully treated by the system, by both intention and by ignorance.”
“I have had patients who report that EMTs have tried to look under their clothes to determine their gender and transgender patients who have asked point blank to show a provider the results of gender reassignment surgery, not because it was relevant to the issue at hand, but purely out of curiosity,” Dr. Forcier continued. “Then there are the patients who are addressed by the name on their legal record rather than the name that reflects their actual lived experience and identity. These experiences foster this anticipation that is pervasive in this community, that something will be said or done that doesn’t fit who they are, and that ultimately will out them as ‘other.’ ”
I have also felt this sense of being “other” – something I thought I would be immune to as a physician. I have been asked on multiple occasions what my wife does for a living. Moments like this are always awkward. I’m either forced to come out of the closet yet again, or answer vaguely, as if I should be ashamed of my sexuality.
So, how can we move toward equity? Dr. Forcier explained how she lays the groundwork early. “I love pediatrics because kids know when you are being authentic,” she said. “I say who I am, I use she/they pronouns. I also teach by example. If there are more than just my patient in a room, I say, ‘Let’s go around the room and introduce ourselves’ so all have a chance to tell me who they are and how they have come together. If it’s not clear to me, sometimes I prod: ‘How are you here to support [the patient]?’ ”
The point, according to Dr. Forcier: Don’t make assumptions about relationships when you walk into a room with more than one person. Don’t even make assumptions about who the patient is.
But bringing up gender and sexuality can be awkward. Even I sometimes have a hard time. In oncology, patients are there to talk about their cancer and what can be done about it.
“I think it’s really about how it’s framed,” Dr. Forcier said. “In pediatrics, I might start by prefacing it with ‘I am going to ask you some personal questions, and it might seem invasive, but it’s important for your health care. How do you see yourself in the world? What gender identity fits you the best? Who are you attracted to?’ And then I shut up. Doctors need to learn how to stop and wait, provide the space to answer.”
I can see why understanding our patients more deeply is important. We treat people with cancer, not cancer people. As such, understanding someone more fully includes being cognizant of how they identify.
“I am continuously inspired by my LGBTQ patients who have fought to realize who they are and become their truer selves,” Dr. Forcier said. “They know who they are, and they know what they need. They have learned to demand it, to demand that their rights be respected – both civil and human rights.”
As we look toward a future in medicine where diversity, equity, and inclusion have gained prominence and urgency, I think there is reason to be hopeful. In oncology, one institutional study published in 2017 found that, although only about a third of practicing clinicians surveyed were comfortable treating LGBTQ patients, 92% of them acknowledged our unique needs, 78% wanted more education on how to appropriately care for our community, and 64% wanted to be listed as an LGBTQ-friendly provider.
“As an optimist, I believe that those struggling with homophobia/transphobia are open to doing things better,” Dr. Forcier said. “After all, we all strive to be better doctors. Whether explicit or implicit bias is at play, turning moments where colleagues are being inappropriate and showing them an alternative, more inclusive way to handle things is one mechanism to educate, rather than to shame. The bottom line is simple: You don’t have to be perfect. You just have to try.”
Dr. Dizon is the director of women’s cancers at Lifespan Cancer Institute and director of medical oncology at Rhode Island Hospital, both in Providence. He is also a professor of medicine at Brown University. His research interests are in novel treatments of women’s cancers and issues related to survivorship, particularly as they relate to sexual health after cancer for both men and women.
A version of this article first appeared on Medscape.com.
I write a lot about watershed moments in my career, things that proved to be moments of tremendous growth, as a person and as a doctor.
One of these occurred early in my career when I met a new patient with ovarian cancer. When I walked into the exam room, I made eye contact with the woman who was accompanied by a man. I assumed they were married, so I went to her first. I introduced myself, stating that I was here to talk about how best to treat her cancer. She stopped me quickly. “Doctor, I am not the patient,” she said. “He is.”
It was the first time I had cared for a transgender man with ovarian cancer. I recall how awkward the following moments were – for all of us. It was the first time I realized that cancer does not have a gender. Men can get breast cancer. Trans women can get prostate cancer. Trans men can get ovarian cancer.
But even many years later, we are not much further along in how prepared we are as a medical community to care for LGBTQ persons. Lesbian, gay, bisexual, transgender, and queer people are not part of the normal medical school curriculum. For most medical students, LGBTQ health is still approached as an aside – perhaps during an infectious disease clerkship, while learning about STDs and HIV. Students do not learn how to approach the male couple seeking to become parents, STD risk reduction for gays and lesbians, or the trans man with ovarian cancer.
But they should, particularly in light of a 2015 study evaluating bias among U.S. medical students. The analysis found that about 45% of medical students exhibited explicit bias against LGBTQ individuals and 8 in 10 held an implicit bias. Fewer than 20% showed no evidence of bias. This lack of preparedness to treat LGBTQ individuals against a backdrop of bias in the medical community often leads patients to mistrust medicine.
To gain perspective outside of oncology, I spoke to Michelle Forcier (she/they), MD, MPH, assistant dean of admissions and professor of pediatrics at Brown University, Providence, R.I. Dr. Forcier agreed that “LGBTQ/rainbow health has been harmfully treated by the system, by both intention and by ignorance.”
“I have had patients who report that EMTs have tried to look under their clothes to determine their gender and transgender patients who have asked point blank to show a provider the results of gender reassignment surgery, not because it was relevant to the issue at hand, but purely out of curiosity,” Dr. Forcier continued. “Then there are the patients who are addressed by the name on their legal record rather than the name that reflects their actual lived experience and identity. These experiences foster this anticipation that is pervasive in this community, that something will be said or done that doesn’t fit who they are, and that ultimately will out them as ‘other.’ ”
I have also felt this sense of being “other” – something I thought I would be immune to as a physician. I have been asked on multiple occasions what my wife does for a living. Moments like this are always awkward. I’m either forced to come out of the closet yet again, or answer vaguely, as if I should be ashamed of my sexuality.
So, how can we move toward equity? Dr. Forcier explained how she lays the groundwork early. “I love pediatrics because kids know when you are being authentic,” she said. “I say who I am, I use she/they pronouns. I also teach by example. If there are more than just my patient in a room, I say, ‘Let’s go around the room and introduce ourselves’ so all have a chance to tell me who they are and how they have come together. If it’s not clear to me, sometimes I prod: ‘How are you here to support [the patient]?’ ”
The point, according to Dr. Forcier: Don’t make assumptions about relationships when you walk into a room with more than one person. Don’t even make assumptions about who the patient is.
But bringing up gender and sexuality can be awkward. Even I sometimes have a hard time. In oncology, patients are there to talk about their cancer and what can be done about it.
“I think it’s really about how it’s framed,” Dr. Forcier said. “In pediatrics, I might start by prefacing it with ‘I am going to ask you some personal questions, and it might seem invasive, but it’s important for your health care. How do you see yourself in the world? What gender identity fits you the best? Who are you attracted to?’ And then I shut up. Doctors need to learn how to stop and wait, provide the space to answer.”
I can see why understanding our patients more deeply is important. We treat people with cancer, not cancer people. As such, understanding someone more fully includes being cognizant of how they identify.
“I am continuously inspired by my LGBTQ patients who have fought to realize who they are and become their truer selves,” Dr. Forcier said. “They know who they are, and they know what they need. They have learned to demand it, to demand that their rights be respected – both civil and human rights.”
As we look toward a future in medicine where diversity, equity, and inclusion have gained prominence and urgency, I think there is reason to be hopeful. In oncology, one institutional study published in 2017 found that, although only about a third of practicing clinicians surveyed were comfortable treating LGBTQ patients, 92% of them acknowledged our unique needs, 78% wanted more education on how to appropriately care for our community, and 64% wanted to be listed as an LGBTQ-friendly provider.
“As an optimist, I believe that those struggling with homophobia/transphobia are open to doing things better,” Dr. Forcier said. “After all, we all strive to be better doctors. Whether explicit or implicit bias is at play, turning moments where colleagues are being inappropriate and showing them an alternative, more inclusive way to handle things is one mechanism to educate, rather than to shame. The bottom line is simple: You don’t have to be perfect. You just have to try.”
Dr. Dizon is the director of women’s cancers at Lifespan Cancer Institute and director of medical oncology at Rhode Island Hospital, both in Providence. He is also a professor of medicine at Brown University. His research interests are in novel treatments of women’s cancers and issues related to survivorship, particularly as they relate to sexual health after cancer for both men and women.
A version of this article first appeared on Medscape.com.
I write a lot about watershed moments in my career, things that proved to be moments of tremendous growth, as a person and as a doctor.
One of these occurred early in my career when I met a new patient with ovarian cancer. When I walked into the exam room, I made eye contact with the woman who was accompanied by a man. I assumed they were married, so I went to her first. I introduced myself, stating that I was here to talk about how best to treat her cancer. She stopped me quickly. “Doctor, I am not the patient,” she said. “He is.”
It was the first time I had cared for a transgender man with ovarian cancer. I recall how awkward the following moments were – for all of us. It was the first time I realized that cancer does not have a gender. Men can get breast cancer. Trans women can get prostate cancer. Trans men can get ovarian cancer.
But even many years later, we are not much further along in how prepared we are as a medical community to care for LGBTQ persons. Lesbian, gay, bisexual, transgender, and queer people are not part of the normal medical school curriculum. For most medical students, LGBTQ health is still approached as an aside – perhaps during an infectious disease clerkship, while learning about STDs and HIV. Students do not learn how to approach the male couple seeking to become parents, STD risk reduction for gays and lesbians, or the trans man with ovarian cancer.
But they should, particularly in light of a 2015 study evaluating bias among U.S. medical students. The analysis found that about 45% of medical students exhibited explicit bias against LGBTQ individuals and 8 in 10 held an implicit bias. Fewer than 20% showed no evidence of bias. This lack of preparedness to treat LGBTQ individuals against a backdrop of bias in the medical community often leads patients to mistrust medicine.
To gain perspective outside of oncology, I spoke to Michelle Forcier (she/they), MD, MPH, assistant dean of admissions and professor of pediatrics at Brown University, Providence, R.I. Dr. Forcier agreed that “LGBTQ/rainbow health has been harmfully treated by the system, by both intention and by ignorance.”
“I have had patients who report that EMTs have tried to look under their clothes to determine their gender and transgender patients who have asked point blank to show a provider the results of gender reassignment surgery, not because it was relevant to the issue at hand, but purely out of curiosity,” Dr. Forcier continued. “Then there are the patients who are addressed by the name on their legal record rather than the name that reflects their actual lived experience and identity. These experiences foster this anticipation that is pervasive in this community, that something will be said or done that doesn’t fit who they are, and that ultimately will out them as ‘other.’ ”
I have also felt this sense of being “other” – something I thought I would be immune to as a physician. I have been asked on multiple occasions what my wife does for a living. Moments like this are always awkward. I’m either forced to come out of the closet yet again, or answer vaguely, as if I should be ashamed of my sexuality.
So, how can we move toward equity? Dr. Forcier explained how she lays the groundwork early. “I love pediatrics because kids know when you are being authentic,” she said. “I say who I am, I use she/they pronouns. I also teach by example. If there are more than just my patient in a room, I say, ‘Let’s go around the room and introduce ourselves’ so all have a chance to tell me who they are and how they have come together. If it’s not clear to me, sometimes I prod: ‘How are you here to support [the patient]?’ ”
The point, according to Dr. Forcier: Don’t make assumptions about relationships when you walk into a room with more than one person. Don’t even make assumptions about who the patient is.
But bringing up gender and sexuality can be awkward. Even I sometimes have a hard time. In oncology, patients are there to talk about their cancer and what can be done about it.
“I think it’s really about how it’s framed,” Dr. Forcier said. “In pediatrics, I might start by prefacing it with ‘I am going to ask you some personal questions, and it might seem invasive, but it’s important for your health care. How do you see yourself in the world? What gender identity fits you the best? Who are you attracted to?’ And then I shut up. Doctors need to learn how to stop and wait, provide the space to answer.”
I can see why understanding our patients more deeply is important. We treat people with cancer, not cancer people. As such, understanding someone more fully includes being cognizant of how they identify.
“I am continuously inspired by my LGBTQ patients who have fought to realize who they are and become their truer selves,” Dr. Forcier said. “They know who they are, and they know what they need. They have learned to demand it, to demand that their rights be respected – both civil and human rights.”
As we look toward a future in medicine where diversity, equity, and inclusion have gained prominence and urgency, I think there is reason to be hopeful. In oncology, one institutional study published in 2017 found that, although only about a third of practicing clinicians surveyed were comfortable treating LGBTQ patients, 92% of them acknowledged our unique needs, 78% wanted more education on how to appropriately care for our community, and 64% wanted to be listed as an LGBTQ-friendly provider.
“As an optimist, I believe that those struggling with homophobia/transphobia are open to doing things better,” Dr. Forcier said. “After all, we all strive to be better doctors. Whether explicit or implicit bias is at play, turning moments where colleagues are being inappropriate and showing them an alternative, more inclusive way to handle things is one mechanism to educate, rather than to shame. The bottom line is simple: You don’t have to be perfect. You just have to try.”
Dr. Dizon is the director of women’s cancers at Lifespan Cancer Institute and director of medical oncology at Rhode Island Hospital, both in Providence. He is also a professor of medicine at Brown University. His research interests are in novel treatments of women’s cancers and issues related to survivorship, particularly as they relate to sexual health after cancer for both men and women.
A version of this article first appeared on Medscape.com.
Metabolites implicated in CHD development in African Americans
Selected metabolic biomarkers may influence disease risk and progression in African American and White persons in different ways, a cohort study of the landmark Jackson Heart Study has found.
The investigators identified 22 specific metabolites that seem to influence incident CHD risk in African American patients – 13 metabolites that were also replicated in a multiethnic population and 9 novel metabolites that include N-acylamides and leucine, a branched-chain amino acid.
“To our knowledge, this is the first time that an N-acylamide as a class of molecule has been shown to be associated with incident coronary heart disease,” lead study author Daniel E. Cruz, MD, an instructor at Harvard Medical School in the division of cardiovascular medicine at Beth Israel Deaconess Medical Center in Boston, said in an interview.
The researchers analyzed targeted plasma metabolomic profiles of 2,346 participants in the Jackson Heart Study, a prospective population-based cohort study in the Mississippi city that included 5,306 African American patients evaluated over 15 years. They then performed a replication analysis of CHD-associated metabolites among 1,588 multiethnic participants in the Women’s Health Initiative, another population-based cohort study that included 161,808 postmenopausal women, also over 15 years. In all, the study, published in JAMA Cardiology, identified 46 metabolites that were associated with incident CHD up to 16 years before the incident event
Dr. Cruz said the “most interesting” findings were the roles of the N-acylamide linoleoyl ethanolamide and leucine. The former is of interest “because it is a lipid-signaling molecule that has been shown to have anti-inflammatory effects on macrophages; the influence and effects on macrophages are of particular interest because of macrophages’ central role in atherosclerosis and coronary heart disease,” he said.
Leucine draws interest because, in this study population, it was linked to a reduced risk of incident CHD. The researchers cited four previous studies in predominantly non-Hispanic White populations that found no association between branched-chain amino acids and incident CHD in Circulation, Stroke Circulation: Genomic and Precision Medicine, and Atherosclerosis. Other branched-amino acids included in the analysis trended toward a decreased risk of CHD, but those didn’t achieve the same statistical significance as that of leucine, Dr. Cruz said.
“In some of the analyses we did, there was a subset of metabolites that the associations with CHD appeared to be different between self-identified African Americans in the Jackson cohort vs. self-identified non-Hispanic Whites, and leucine was one of them,” Dr. Cruz said.
He emphasized that this study “is not a genetic analysis” because the participants self-identified their race. “So our next step is to figure out why this difference appears between these self-identified groups,” Dr. Cruz said. “We suspect environmental factors play a role – psychological stress, diet, income level, to name a few – but we are also interested to see if there are genetic causes.”
The results “are not clinically applicable,” Dr. Cruz said, but they do point to a need for more ethnically and racially diverse study populations. “The big picture is that, before we go implementing novel biomarkers into clinical practice, we need to make sure that they are accurate across different populations of people,” he said. “The only way to do this is to study different groups with the same rigor and vigor and thoughtfulness as any other group.”
These findings fall in line with other studies that found other nonmetabolomic biomarkers have countervailing effects on CHD risk in African Americans and non-Hispanic Whites, said Christie M. Ballantyne, MD, chief of cardiology at Baylor College of Medicine in Houston. For example, African Americans have been found to have lower triglyceride and HDL cholesterol levels than those of Whites.
The study “points out that there may be important biological differences in the metabolic pathways and abnormalities in the development of CHD between races,” Dr. Ballantyne said. “This further emphasizes both the importance and challenge of testing therapies in multiple racial/ethnic groups and with more even representation between men and women.”
Combining metabolomic profiling along with other biomarkers and possibly genetics may be helpful to “personalize” therapies in the future, he added.
Dr. Cruz and Dr. Ballantyne have no relevant relationships to disclose.
Selected metabolic biomarkers may influence disease risk and progression in African American and White persons in different ways, a cohort study of the landmark Jackson Heart Study has found.
The investigators identified 22 specific metabolites that seem to influence incident CHD risk in African American patients – 13 metabolites that were also replicated in a multiethnic population and 9 novel metabolites that include N-acylamides and leucine, a branched-chain amino acid.
“To our knowledge, this is the first time that an N-acylamide as a class of molecule has been shown to be associated with incident coronary heart disease,” lead study author Daniel E. Cruz, MD, an instructor at Harvard Medical School in the division of cardiovascular medicine at Beth Israel Deaconess Medical Center in Boston, said in an interview.
The researchers analyzed targeted plasma metabolomic profiles of 2,346 participants in the Jackson Heart Study, a prospective population-based cohort study in the Mississippi city that included 5,306 African American patients evaluated over 15 years. They then performed a replication analysis of CHD-associated metabolites among 1,588 multiethnic participants in the Women’s Health Initiative, another population-based cohort study that included 161,808 postmenopausal women, also over 15 years. In all, the study, published in JAMA Cardiology, identified 46 metabolites that were associated with incident CHD up to 16 years before the incident event
Dr. Cruz said the “most interesting” findings were the roles of the N-acylamide linoleoyl ethanolamide and leucine. The former is of interest “because it is a lipid-signaling molecule that has been shown to have anti-inflammatory effects on macrophages; the influence and effects on macrophages are of particular interest because of macrophages’ central role in atherosclerosis and coronary heart disease,” he said.
Leucine draws interest because, in this study population, it was linked to a reduced risk of incident CHD. The researchers cited four previous studies in predominantly non-Hispanic White populations that found no association between branched-chain amino acids and incident CHD in Circulation, Stroke Circulation: Genomic and Precision Medicine, and Atherosclerosis. Other branched-amino acids included in the analysis trended toward a decreased risk of CHD, but those didn’t achieve the same statistical significance as that of leucine, Dr. Cruz said.
“In some of the analyses we did, there was a subset of metabolites that the associations with CHD appeared to be different between self-identified African Americans in the Jackson cohort vs. self-identified non-Hispanic Whites, and leucine was one of them,” Dr. Cruz said.
He emphasized that this study “is not a genetic analysis” because the participants self-identified their race. “So our next step is to figure out why this difference appears between these self-identified groups,” Dr. Cruz said. “We suspect environmental factors play a role – psychological stress, diet, income level, to name a few – but we are also interested to see if there are genetic causes.”
The results “are not clinically applicable,” Dr. Cruz said, but they do point to a need for more ethnically and racially diverse study populations. “The big picture is that, before we go implementing novel biomarkers into clinical practice, we need to make sure that they are accurate across different populations of people,” he said. “The only way to do this is to study different groups with the same rigor and vigor and thoughtfulness as any other group.”
These findings fall in line with other studies that found other nonmetabolomic biomarkers have countervailing effects on CHD risk in African Americans and non-Hispanic Whites, said Christie M. Ballantyne, MD, chief of cardiology at Baylor College of Medicine in Houston. For example, African Americans have been found to have lower triglyceride and HDL cholesterol levels than those of Whites.
The study “points out that there may be important biological differences in the metabolic pathways and abnormalities in the development of CHD between races,” Dr. Ballantyne said. “This further emphasizes both the importance and challenge of testing therapies in multiple racial/ethnic groups and with more even representation between men and women.”
Combining metabolomic profiling along with other biomarkers and possibly genetics may be helpful to “personalize” therapies in the future, he added.
Dr. Cruz and Dr. Ballantyne have no relevant relationships to disclose.
Selected metabolic biomarkers may influence disease risk and progression in African American and White persons in different ways, a cohort study of the landmark Jackson Heart Study has found.
The investigators identified 22 specific metabolites that seem to influence incident CHD risk in African American patients – 13 metabolites that were also replicated in a multiethnic population and 9 novel metabolites that include N-acylamides and leucine, a branched-chain amino acid.
“To our knowledge, this is the first time that an N-acylamide as a class of molecule has been shown to be associated with incident coronary heart disease,” lead study author Daniel E. Cruz, MD, an instructor at Harvard Medical School in the division of cardiovascular medicine at Beth Israel Deaconess Medical Center in Boston, said in an interview.
The researchers analyzed targeted plasma metabolomic profiles of 2,346 participants in the Jackson Heart Study, a prospective population-based cohort study in the Mississippi city that included 5,306 African American patients evaluated over 15 years. They then performed a replication analysis of CHD-associated metabolites among 1,588 multiethnic participants in the Women’s Health Initiative, another population-based cohort study that included 161,808 postmenopausal women, also over 15 years. In all, the study, published in JAMA Cardiology, identified 46 metabolites that were associated with incident CHD up to 16 years before the incident event
Dr. Cruz said the “most interesting” findings were the roles of the N-acylamide linoleoyl ethanolamide and leucine. The former is of interest “because it is a lipid-signaling molecule that has been shown to have anti-inflammatory effects on macrophages; the influence and effects on macrophages are of particular interest because of macrophages’ central role in atherosclerosis and coronary heart disease,” he said.
Leucine draws interest because, in this study population, it was linked to a reduced risk of incident CHD. The researchers cited four previous studies in predominantly non-Hispanic White populations that found no association between branched-chain amino acids and incident CHD in Circulation, Stroke Circulation: Genomic and Precision Medicine, and Atherosclerosis. Other branched-amino acids included in the analysis trended toward a decreased risk of CHD, but those didn’t achieve the same statistical significance as that of leucine, Dr. Cruz said.
“In some of the analyses we did, there was a subset of metabolites that the associations with CHD appeared to be different between self-identified African Americans in the Jackson cohort vs. self-identified non-Hispanic Whites, and leucine was one of them,” Dr. Cruz said.
He emphasized that this study “is not a genetic analysis” because the participants self-identified their race. “So our next step is to figure out why this difference appears between these self-identified groups,” Dr. Cruz said. “We suspect environmental factors play a role – psychological stress, diet, income level, to name a few – but we are also interested to see if there are genetic causes.”
The results “are not clinically applicable,” Dr. Cruz said, but they do point to a need for more ethnically and racially diverse study populations. “The big picture is that, before we go implementing novel biomarkers into clinical practice, we need to make sure that they are accurate across different populations of people,” he said. “The only way to do this is to study different groups with the same rigor and vigor and thoughtfulness as any other group.”
These findings fall in line with other studies that found other nonmetabolomic biomarkers have countervailing effects on CHD risk in African Americans and non-Hispanic Whites, said Christie M. Ballantyne, MD, chief of cardiology at Baylor College of Medicine in Houston. For example, African Americans have been found to have lower triglyceride and HDL cholesterol levels than those of Whites.
The study “points out that there may be important biological differences in the metabolic pathways and abnormalities in the development of CHD between races,” Dr. Ballantyne said. “This further emphasizes both the importance and challenge of testing therapies in multiple racial/ethnic groups and with more even representation between men and women.”
Combining metabolomic profiling along with other biomarkers and possibly genetics may be helpful to “personalize” therapies in the future, he added.
Dr. Cruz and Dr. Ballantyne have no relevant relationships to disclose.
FROM JAMA CARDIOLOGY
Gender Disparities in Income Among Board-Certified Dermatologists
Although the number of female graduates from US medical schools has steadily increased,1 several studies since the 1970s indicate that a disparity exists in salary, academic rank, and promotion among female and male physicians across multiple specialties.2-8 Proposed explanations include women working fewer hours, having lower productivity rates, undernegotiating compensation, and underbilling for the same services. However, when controlling for variables such as time, experience, specialty, rank, and research activities, this gap unequivocally persists. There are limited data on this topic in dermatology, a field in which women comprise more than half of the working population.6,7 Most analyses of gender disparities in dermatology are based on data primarily from academic dermatologists, which may not be representative of the larger population of dermatologists.8,9 The purpose of this study is to determine if an income disparity exists between male and female physicians in dermatology, including those in private practice and those who are specialty trained.
Methods
Population—We performed a cross-sectional self-reported survey to examine compensation of male and female board-certified dermatologists (MDs/DOs). Several populations of dermatologists were surveyed in August and September 2018. Approximately 20% of the members of the American Academy of Dermatology were randomly selected and sent a link to the survey. Additionally, a survey link was emailed to members of the Association of Professors of Dermatology, American College of Mohs Surgery, and American Society for Dermatologic Surgery. A link to the survey also was published on “The Board Certified Dermatologists” Facebook group.
Statistical Analysis—Descriptive statistics were used to summarize the distribution of variables overall and within gender (male or female). Not all respondents completed every section, and duplicates and incomplete responses were removed. Variables were compared between genders using t tests (continuous), the Pearson χ2 test (nominal), or the Cochran-Mantel-Haenszel test (ordinal). For categorical variables with small cell counts, an exact χ2 test for small samples was used. For continuous variables, t test P values were calculated using either pooled or Satterthwaithe approximation.
To analyze the effect of different variables on total income using multivariate and univariate linear regression, the income variable was transformed into a continuous variable by using midpoints of the categories. Univariate linear regression was used to assess the effect and significance of each variable on total annual income. Variables that were found to have a P value of less than .05 (α=.05) were deemed as significant predictors of total annual income. These variables were added to a multivariate linear regression model to determine their effect on income when adjusting for other significant (and approaching significance) factors. In addition, variables that were found to have a P value of less than .2 (α=.05) were added to the multivariate linear regression model to assess significance of these specific variables when adjusting for other factors. In this way, we tested and accounted for a multitude of variables as potential sources of confounding.
Results
Demographics—Our survey was emailed to 3079 members of the American Academy of Dermatology, and 277 responses were received. Approximately 144 additional responses were obtained collectively from links sent to the directories of the Association of Professors of Dermatology, American College of Mohs Surgery, and American Society for Dermatologic Surgery and from social media. Of these respondents, 53.65% (213/397) were female and 46.35% (184/397) were male. When stratifying by race/ethnicity, 77.33% identified as White; 13.85% identified as Asian; 6.3% identified as Black or African American, Hispanic/Latino, and Native American; and 2.52% chose not to respond. Although most male and female respondents were White, a significantly higher proportion of female respondents identified as Asian or Black/African American/Hispanic/Latino/Native American (P=.0006). We found that race/ethnicity did not significantly impact income (P=.2736). All US Census regions were represented in this study, and geographic distribution as well as population density of practice location (ie, rural, suburban, urban setting) did not differ significantly between males and females (P=.5982 and P=.1007, respectively) and did not significantly impact income (P=.3225 and P=.10663, respectively).
Income—Total annual income was defined as the aggregate sum of all types of financial compensation received in 1 calendar year (eg, salary, bonuses, benefits) and was elicited as an ordinal variable in income brackets of US $100,000. Overall, χ2 analysis showed a statistically significant difference in annual total income between male and female dermatologists (P<.0001), with a higher proportion of males in the highest pay bracket (Figure). Gender remained a statistically significant predictor of income on both univariate and multivariate linear regression analyses (P=.0002 and P<.0001, respectively), indicating that gender has a significant impact on compensation, even after controlling for other variables (eTable). Of note, males in this sample were on average older and in practice longer than females (approximately 6 years, P<.0001). However, when univariate linear regression was performed, both age (P=.8281) and number of years since residency or fellowship completion (P=.8743) were not significant predictors of income.
Practice Type—There were no statistically significant differences between men and women in practice type (P=.1489), including academic/university, hospital based, and solo and group private practice; pay structure (P=.1437), including base salary, collection-based salary, or salary plus incentive; holding a supervisory role (P=.0846); or having ownership of a practice (P=.3565)(eTable). Most respondents were in solo or group private practice (58.2%) and had a component of productivity-based compensation (77.5%). In addition, 62% of private practice dermatologists (133/212) had an ownership interest in their practice. As expected, univariate and multivariate regression analyses showed that practice type, pay structure, supervisory roles, and employee vs ownership roles were significant predictors of income (P<.05)(eTable).
Work Productivity—Statistically significant differences were found between men and women in hours worked per week in direct patient care (P<.0001) and in patient visits per week (P=.0052), with a higher percentage of men working more than 40 hours per week and men seeing an average of approximately 22 more patients per week than women. In the subgroup of all dermatologists working more than 40 hours per week, a statistically significant difference in income persisted between males and females (P=.0001). Hours worked per week and patient visits per week were statistically significant predictors of income on both univariate and multivariate regression analyses (P<.05)(Table).
Education and Fellowship Training—No significant difference existed between males and females in type of undergraduate school attended, namely public or private institutions (P=.1090), but a significant difference existed within type of medical school education, with a higher percentage of females attending private medical schools (53.03%) compared to males (38.24%)(P=.0045). However, type of undergraduate or medical school attended had no impact on income (P=.9103). A higher percentage of males (27.32%) completed additional advanced degrees, such as a master of business administration or a master of public health, compared to females (16.9%)(P=.0122). However, the completion of additional advanced degrees had no significant impact on income (P=.2379). No statistical significance existed between males and females in number of residencies completed (P=.3236), and residencies completed had no significant impact on income (P=.4584).
Of 397 respondents, approximately one-third of respondents completed fellowship training (36.5%). Fellowships included dermatopathology, surgery/cosmetics, and other (encompassing complex medical, research, transplant, and pediatric dermatology). Although similar percentages of men and women completed fellowship training, men and women differed significantly by type of fellowship completed (P=.0188). There were similar rates of dermatopathology and surgical fellowship completion between genders but almost 3 times the number of females who completed other fellowships. Type of fellowship training was a statistically significant predictor of income on both univariate and multivariate regression analyses (P<.00001 and P<.0001, respectively).
Work Activity—Respondents were asked to estimate the amount of time devoted to general dermatology, dermatopathology, Mohs micrographic surgery, cosmetics, and dermatologic surgery in their practices (Table). Women devoted a significantly higher average percentage of time to cosmetics (7.89%) compared to men (4.52%)(P=.0097). The number of cosmetic procedures performed per week was not statistically significantly different between men and women (P=.8035) but was a significant factor for income on univariate regression analysis (P=.0002). Time spent performing dermatologic surgery, general dermatology, or Mohs micrographic surgery did not significantly differ between men and women but was found to significantly influence income.
Academic Dermatology—Among the respondents working in academic settings, χ2 analysis identified a significant difference in the faculty rank between males and females, with a tendency for lower academic rank in females (P=.0508). Assistant professorship was comprised of 35% of men vs 51% of women, whereas full professorship consisted of 26% of men but only 13% of women. Academic rank was found to be a significant predictor of income, with higher rank associated with higher income (P<.0001 on univariate regression analysis). However, when adjusting for other factors, academic rank was no longer a significant predictor of income (P=.0840 on multivariate regression analysis). No significant difference existed between men and women in funding received from the National Institutes of Health, conduction of clinical trials, or authorship of scientific publications, and these factors were not found to have a significant impact on income.
Work Leave—Male and female dermatologists showed a statistically significant difference in maternity or Family and Medical Leave Act (FMLA) leave taken over their careers, with 56.03% of females reporting leave taken compared to 6.78% of males (P<.0001). Women reported a significantly higher average number of weeks of maternity or FMLA leave taken over their careers (12.92 weeks) compared to men (2.42 weeks) (P<.0001). However, upon univariate regression analysis, whether or not maternity or FMLA leave was taken over their careers (P=.2005), the number of times that maternity or FMLA leave was taken (P=.4350), and weeks of maternity or FMLA leave taken (P=.4057) were all not significant predictors of income.
Comment
This study sought to investigate the relationship between income and gender in dermatology, and our results demonstrated that statistically significant differences in total annual income exist between male and female dermatologists, with male dermatologists earning a significantly higher income, approximately an additional $80,000. Our results are consistent with other studies of US physician income, which have found a gender gap ranging from $13,399 to $82,000 that persists even when controlling for factors such as specialty choice, practice setting, rank and role in practice, work hours, vacation/leave taken, and others.2-7,10-15
There was a significant difference in rank of male and female academic dermatologists, with fewer females at higher academic ranks. These results are consistent with numerous studies in academic dermatology that show underrepresentation of women at higher academic ranks and leadership positions.8,9,16-18 Poor negotiation may contribute to differences in both rank and income.19,20 There are conflicting data on research productivity of academic dermatologists and length of career, first and senior authorship, and quality and academic impact, all of which add complexity to this topic.8,9,12,16-18,20-23Male and female dermatologists reported significant differences in productivity, with male dermatologists working more hours and seeing more patients per week than female dermatologists. These results are consistent with other studies of dermatologists4,24 and other physicians.12 Regardless, gender was still found to have a significant impact on income even when controlling for differences in productivity and FMLA leave taken. These results are consistent with numerous studies of US physicians that found a gender gap in income even when controlling for hours worked.12,23 Although fellowship training as a whole was found to significantly impact income, our results do not characterize whether the impact on income was positive or negative for each type of fellowship. Fellowship training in specialties such as internal medicine or general surgery likewise has variable effects on income.24,25
A comprehensive survey design and significant data elicited from dermatologists working in private practice for the first time served as the main strengths of this study. Limitations included self-reported design, categorical ranges, and limited sample size in subgroups. Future directions include deeper analysis of subgroups, including fellowship-trained dermatologists, dermatologists working more than 40 hours per week, and female dermatologists by race/ethnicity.
Conclusion
We have demonstrated that self-reported discrepancies in salary between male and female dermatologists exist, with male dermatologists earning a significantly higher annual salary than their female counterparts. This study identified and stratified several career factors that comprise the broad field and practice of dermatology. Even when controlling for these variations, we have demonstrated that gender alone remains a significant predictor of income, indicating that an unexplained income gap between the 2 genders exists in dermatology.
- Association of American Medical Colleges. Table B-2.2: Total Graduates by U.S. Medical School and Sex, 2015-2016 through 2019-2020. December 3, 2020. Accessed October 12, 2021. https://www.aamc.org/download/321532/data/factstableb2-2.pdf
- Willett LL, Halvorsen AJ, McDonald FS, et al. Gender differences in salary of internal medicine residency directors: a national survey. Am J Med. 2015;128:659-665.
- Weeks WB, Wallace AE, Mackenzie TA. Gender differences in anesthesiologists’ annual incomes. Anesthesiology. 2007;106:806-811.
- Weeks WB, Wallace AE. Gender differences in ophthalmologists’ annual incomes. Ophthalmology. 2007;114:1696-1701.
- Singh A, Burke CA, Larive B, et al. Do gender disparities persist in gastroenterology after 10 years of practice? Am J Gastroenterol. 2008;103:1589-1595.
- Desai T, Ali S, Fang X, et al. Equal work for unequal pay: the gender reimbursement gap for healthcare providers in the United States. Postgrad Med J. 2016;92:571-575.
- Jena AB, Olenski AR, Blumenthal DM. Sex differences in physician salary in US public medical schools. JAMA Intern Med. 2016;176:1294-1304.
- John AM, Gupta AB, John ES, et al. A gender-based comparison of promotion and research productivity in academic dermatology. Dermatol Online J. 2016;22:13030/qt1hx610pf.
- Sadeghpour M, Bernstein I, Ko C, et al. Role of sex in academic dermatology: results from a national survey. Arch Dermatol. 2012;148:809-814.
- Gilbert SB, Allshouse A, Skaznik-Wikiel ME. Gender inequality in salaries among reproductive endocrinology and infertility subspecialists in the United States. Fertil Steril. 2019;111:1194-1200.
- Jagsi R, Griffith KA, Stewart A, et al. Gender differences in the salaries of physician researchers. JAMA. 2012;307:2410-2417. doi:10.1001/jama.2012.6183
- Apaydin EA, Chen PGC, Friedberg MW, et al. Differences in physician income by gender in a multiregion survey. J Gen Intern Med. 2018;33:1574-1581.
- Read S, Butkus R, Weissman A, et al. Compensation disparities by gender in internal medicine. Ann Intern Med. 2018;169:658-661.
- Guss ZD, Chen Q, Hu C, et al. Differences in physician compensation between men and women at United States public academic radiation oncology departments. Int J Radiat Oncol Biol Phys. 2019;103:314-319.
- Lo Sasso AT, Richards MR, Chou CF, et al. The $16,819 pay gap for newly trained physicians: the unexplained trend of men earning more than women. Health Aff (Millwood). 2011;30:193-201.
- Shah A, Jalal S, Khosa F. Influences for gender disparity in dermatology in North America. Int J Dermatol. 2018;57:171-176.
- Shi CR, Olbricht S, Vleugels RA, et al. Sex and leadership in academic dermatology: a nationwide survey. J Am Acad Dermatol. 2017;77:782-784.
- Shih AF, Sun W, Yick C, et al. Trends in scholarly productivity of dermatology faculty by academic status and gender. J Am Acad Dermatol. 2019;80:1774-1776.
- Sarfaty S, Kolb D, Barnett R, et al. Negotiation in academic medicine: a necessary career skill. J Womens Health (Larchmt). 2007;16:235-244.
- Jacobson CC, Nguyen JC, Kimball AB. Gender and parenting significantly affect work hours of recent dermatology program graduates. Arch Dermatol. 2004;140:191-196.
- Feramisco JD, Leitenberger JJ, Redfern SI, et al. A gender gap in the dermatology literature? Cross-sectional analysis of manuscript authorship trends in dermatology journals during 3 decades. J Am Acad Dermatol. 2009;60:63-69.
- Bendels MHK, Dietz MC, Brüggmann D, et al. Gender disparities in high-quality dermatology research: a descriptive bibliometric study on scientific authorships. BMJ Open. 2018;8:e020089.
- Seabury SA, Chandra A, Jena AB. Trends in the earnings of male and female health care professionals in the United States, 1987 to 2010. JAMA Intern Med. 2013;173:1748-1750.
- Baimas-George M, Fleischer B, Slakey D, et al. Is it all about the money? Not all surgical subspecialization leads to higher lifetime revenue when compared to general surgery. J Surg Educ. 2017;74:E62-E66.
- Leigh JP, Tancredi D, Jerant A, et al. Lifetime earnings for physicians across specialties. Med Care. 2012;50:1093-1101.
Although the number of female graduates from US medical schools has steadily increased,1 several studies since the 1970s indicate that a disparity exists in salary, academic rank, and promotion among female and male physicians across multiple specialties.2-8 Proposed explanations include women working fewer hours, having lower productivity rates, undernegotiating compensation, and underbilling for the same services. However, when controlling for variables such as time, experience, specialty, rank, and research activities, this gap unequivocally persists. There are limited data on this topic in dermatology, a field in which women comprise more than half of the working population.6,7 Most analyses of gender disparities in dermatology are based on data primarily from academic dermatologists, which may not be representative of the larger population of dermatologists.8,9 The purpose of this study is to determine if an income disparity exists between male and female physicians in dermatology, including those in private practice and those who are specialty trained.
Methods
Population—We performed a cross-sectional self-reported survey to examine compensation of male and female board-certified dermatologists (MDs/DOs). Several populations of dermatologists were surveyed in August and September 2018. Approximately 20% of the members of the American Academy of Dermatology were randomly selected and sent a link to the survey. Additionally, a survey link was emailed to members of the Association of Professors of Dermatology, American College of Mohs Surgery, and American Society for Dermatologic Surgery. A link to the survey also was published on “The Board Certified Dermatologists” Facebook group.
Statistical Analysis—Descriptive statistics were used to summarize the distribution of variables overall and within gender (male or female). Not all respondents completed every section, and duplicates and incomplete responses were removed. Variables were compared between genders using t tests (continuous), the Pearson χ2 test (nominal), or the Cochran-Mantel-Haenszel test (ordinal). For categorical variables with small cell counts, an exact χ2 test for small samples was used. For continuous variables, t test P values were calculated using either pooled or Satterthwaithe approximation.
To analyze the effect of different variables on total income using multivariate and univariate linear regression, the income variable was transformed into a continuous variable by using midpoints of the categories. Univariate linear regression was used to assess the effect and significance of each variable on total annual income. Variables that were found to have a P value of less than .05 (α=.05) were deemed as significant predictors of total annual income. These variables were added to a multivariate linear regression model to determine their effect on income when adjusting for other significant (and approaching significance) factors. In addition, variables that were found to have a P value of less than .2 (α=.05) were added to the multivariate linear regression model to assess significance of these specific variables when adjusting for other factors. In this way, we tested and accounted for a multitude of variables as potential sources of confounding.
Results
Demographics—Our survey was emailed to 3079 members of the American Academy of Dermatology, and 277 responses were received. Approximately 144 additional responses were obtained collectively from links sent to the directories of the Association of Professors of Dermatology, American College of Mohs Surgery, and American Society for Dermatologic Surgery and from social media. Of these respondents, 53.65% (213/397) were female and 46.35% (184/397) were male. When stratifying by race/ethnicity, 77.33% identified as White; 13.85% identified as Asian; 6.3% identified as Black or African American, Hispanic/Latino, and Native American; and 2.52% chose not to respond. Although most male and female respondents were White, a significantly higher proportion of female respondents identified as Asian or Black/African American/Hispanic/Latino/Native American (P=.0006). We found that race/ethnicity did not significantly impact income (P=.2736). All US Census regions were represented in this study, and geographic distribution as well as population density of practice location (ie, rural, suburban, urban setting) did not differ significantly between males and females (P=.5982 and P=.1007, respectively) and did not significantly impact income (P=.3225 and P=.10663, respectively).
Income—Total annual income was defined as the aggregate sum of all types of financial compensation received in 1 calendar year (eg, salary, bonuses, benefits) and was elicited as an ordinal variable in income brackets of US $100,000. Overall, χ2 analysis showed a statistically significant difference in annual total income between male and female dermatologists (P<.0001), with a higher proportion of males in the highest pay bracket (Figure). Gender remained a statistically significant predictor of income on both univariate and multivariate linear regression analyses (P=.0002 and P<.0001, respectively), indicating that gender has a significant impact on compensation, even after controlling for other variables (eTable). Of note, males in this sample were on average older and in practice longer than females (approximately 6 years, P<.0001). However, when univariate linear regression was performed, both age (P=.8281) and number of years since residency or fellowship completion (P=.8743) were not significant predictors of income.
Practice Type—There were no statistically significant differences between men and women in practice type (P=.1489), including academic/university, hospital based, and solo and group private practice; pay structure (P=.1437), including base salary, collection-based salary, or salary plus incentive; holding a supervisory role (P=.0846); or having ownership of a practice (P=.3565)(eTable). Most respondents were in solo or group private practice (58.2%) and had a component of productivity-based compensation (77.5%). In addition, 62% of private practice dermatologists (133/212) had an ownership interest in their practice. As expected, univariate and multivariate regression analyses showed that practice type, pay structure, supervisory roles, and employee vs ownership roles were significant predictors of income (P<.05)(eTable).
Work Productivity—Statistically significant differences were found between men and women in hours worked per week in direct patient care (P<.0001) and in patient visits per week (P=.0052), with a higher percentage of men working more than 40 hours per week and men seeing an average of approximately 22 more patients per week than women. In the subgroup of all dermatologists working more than 40 hours per week, a statistically significant difference in income persisted between males and females (P=.0001). Hours worked per week and patient visits per week were statistically significant predictors of income on both univariate and multivariate regression analyses (P<.05)(Table).
Education and Fellowship Training—No significant difference existed between males and females in type of undergraduate school attended, namely public or private institutions (P=.1090), but a significant difference existed within type of medical school education, with a higher percentage of females attending private medical schools (53.03%) compared to males (38.24%)(P=.0045). However, type of undergraduate or medical school attended had no impact on income (P=.9103). A higher percentage of males (27.32%) completed additional advanced degrees, such as a master of business administration or a master of public health, compared to females (16.9%)(P=.0122). However, the completion of additional advanced degrees had no significant impact on income (P=.2379). No statistical significance existed between males and females in number of residencies completed (P=.3236), and residencies completed had no significant impact on income (P=.4584).
Of 397 respondents, approximately one-third of respondents completed fellowship training (36.5%). Fellowships included dermatopathology, surgery/cosmetics, and other (encompassing complex medical, research, transplant, and pediatric dermatology). Although similar percentages of men and women completed fellowship training, men and women differed significantly by type of fellowship completed (P=.0188). There were similar rates of dermatopathology and surgical fellowship completion between genders but almost 3 times the number of females who completed other fellowships. Type of fellowship training was a statistically significant predictor of income on both univariate and multivariate regression analyses (P<.00001 and P<.0001, respectively).
Work Activity—Respondents were asked to estimate the amount of time devoted to general dermatology, dermatopathology, Mohs micrographic surgery, cosmetics, and dermatologic surgery in their practices (Table). Women devoted a significantly higher average percentage of time to cosmetics (7.89%) compared to men (4.52%)(P=.0097). The number of cosmetic procedures performed per week was not statistically significantly different between men and women (P=.8035) but was a significant factor for income on univariate regression analysis (P=.0002). Time spent performing dermatologic surgery, general dermatology, or Mohs micrographic surgery did not significantly differ between men and women but was found to significantly influence income.
Academic Dermatology—Among the respondents working in academic settings, χ2 analysis identified a significant difference in the faculty rank between males and females, with a tendency for lower academic rank in females (P=.0508). Assistant professorship was comprised of 35% of men vs 51% of women, whereas full professorship consisted of 26% of men but only 13% of women. Academic rank was found to be a significant predictor of income, with higher rank associated with higher income (P<.0001 on univariate regression analysis). However, when adjusting for other factors, academic rank was no longer a significant predictor of income (P=.0840 on multivariate regression analysis). No significant difference existed between men and women in funding received from the National Institutes of Health, conduction of clinical trials, or authorship of scientific publications, and these factors were not found to have a significant impact on income.
Work Leave—Male and female dermatologists showed a statistically significant difference in maternity or Family and Medical Leave Act (FMLA) leave taken over their careers, with 56.03% of females reporting leave taken compared to 6.78% of males (P<.0001). Women reported a significantly higher average number of weeks of maternity or FMLA leave taken over their careers (12.92 weeks) compared to men (2.42 weeks) (P<.0001). However, upon univariate regression analysis, whether or not maternity or FMLA leave was taken over their careers (P=.2005), the number of times that maternity or FMLA leave was taken (P=.4350), and weeks of maternity or FMLA leave taken (P=.4057) were all not significant predictors of income.
Comment
This study sought to investigate the relationship between income and gender in dermatology, and our results demonstrated that statistically significant differences in total annual income exist between male and female dermatologists, with male dermatologists earning a significantly higher income, approximately an additional $80,000. Our results are consistent with other studies of US physician income, which have found a gender gap ranging from $13,399 to $82,000 that persists even when controlling for factors such as specialty choice, practice setting, rank and role in practice, work hours, vacation/leave taken, and others.2-7,10-15
There was a significant difference in rank of male and female academic dermatologists, with fewer females at higher academic ranks. These results are consistent with numerous studies in academic dermatology that show underrepresentation of women at higher academic ranks and leadership positions.8,9,16-18 Poor negotiation may contribute to differences in both rank and income.19,20 There are conflicting data on research productivity of academic dermatologists and length of career, first and senior authorship, and quality and academic impact, all of which add complexity to this topic.8,9,12,16-18,20-23Male and female dermatologists reported significant differences in productivity, with male dermatologists working more hours and seeing more patients per week than female dermatologists. These results are consistent with other studies of dermatologists4,24 and other physicians.12 Regardless, gender was still found to have a significant impact on income even when controlling for differences in productivity and FMLA leave taken. These results are consistent with numerous studies of US physicians that found a gender gap in income even when controlling for hours worked.12,23 Although fellowship training as a whole was found to significantly impact income, our results do not characterize whether the impact on income was positive or negative for each type of fellowship. Fellowship training in specialties such as internal medicine or general surgery likewise has variable effects on income.24,25
A comprehensive survey design and significant data elicited from dermatologists working in private practice for the first time served as the main strengths of this study. Limitations included self-reported design, categorical ranges, and limited sample size in subgroups. Future directions include deeper analysis of subgroups, including fellowship-trained dermatologists, dermatologists working more than 40 hours per week, and female dermatologists by race/ethnicity.
Conclusion
We have demonstrated that self-reported discrepancies in salary between male and female dermatologists exist, with male dermatologists earning a significantly higher annual salary than their female counterparts. This study identified and stratified several career factors that comprise the broad field and practice of dermatology. Even when controlling for these variations, we have demonstrated that gender alone remains a significant predictor of income, indicating that an unexplained income gap between the 2 genders exists in dermatology.
Although the number of female graduates from US medical schools has steadily increased,1 several studies since the 1970s indicate that a disparity exists in salary, academic rank, and promotion among female and male physicians across multiple specialties.2-8 Proposed explanations include women working fewer hours, having lower productivity rates, undernegotiating compensation, and underbilling for the same services. However, when controlling for variables such as time, experience, specialty, rank, and research activities, this gap unequivocally persists. There are limited data on this topic in dermatology, a field in which women comprise more than half of the working population.6,7 Most analyses of gender disparities in dermatology are based on data primarily from academic dermatologists, which may not be representative of the larger population of dermatologists.8,9 The purpose of this study is to determine if an income disparity exists between male and female physicians in dermatology, including those in private practice and those who are specialty trained.
Methods
Population—We performed a cross-sectional self-reported survey to examine compensation of male and female board-certified dermatologists (MDs/DOs). Several populations of dermatologists were surveyed in August and September 2018. Approximately 20% of the members of the American Academy of Dermatology were randomly selected and sent a link to the survey. Additionally, a survey link was emailed to members of the Association of Professors of Dermatology, American College of Mohs Surgery, and American Society for Dermatologic Surgery. A link to the survey also was published on “The Board Certified Dermatologists” Facebook group.
Statistical Analysis—Descriptive statistics were used to summarize the distribution of variables overall and within gender (male or female). Not all respondents completed every section, and duplicates and incomplete responses were removed. Variables were compared between genders using t tests (continuous), the Pearson χ2 test (nominal), or the Cochran-Mantel-Haenszel test (ordinal). For categorical variables with small cell counts, an exact χ2 test for small samples was used. For continuous variables, t test P values were calculated using either pooled or Satterthwaithe approximation.
To analyze the effect of different variables on total income using multivariate and univariate linear regression, the income variable was transformed into a continuous variable by using midpoints of the categories. Univariate linear regression was used to assess the effect and significance of each variable on total annual income. Variables that were found to have a P value of less than .05 (α=.05) were deemed as significant predictors of total annual income. These variables were added to a multivariate linear regression model to determine their effect on income when adjusting for other significant (and approaching significance) factors. In addition, variables that were found to have a P value of less than .2 (α=.05) were added to the multivariate linear regression model to assess significance of these specific variables when adjusting for other factors. In this way, we tested and accounted for a multitude of variables as potential sources of confounding.
Results
Demographics—Our survey was emailed to 3079 members of the American Academy of Dermatology, and 277 responses were received. Approximately 144 additional responses were obtained collectively from links sent to the directories of the Association of Professors of Dermatology, American College of Mohs Surgery, and American Society for Dermatologic Surgery and from social media. Of these respondents, 53.65% (213/397) were female and 46.35% (184/397) were male. When stratifying by race/ethnicity, 77.33% identified as White; 13.85% identified as Asian; 6.3% identified as Black or African American, Hispanic/Latino, and Native American; and 2.52% chose not to respond. Although most male and female respondents were White, a significantly higher proportion of female respondents identified as Asian or Black/African American/Hispanic/Latino/Native American (P=.0006). We found that race/ethnicity did not significantly impact income (P=.2736). All US Census regions were represented in this study, and geographic distribution as well as population density of practice location (ie, rural, suburban, urban setting) did not differ significantly between males and females (P=.5982 and P=.1007, respectively) and did not significantly impact income (P=.3225 and P=.10663, respectively).
Income—Total annual income was defined as the aggregate sum of all types of financial compensation received in 1 calendar year (eg, salary, bonuses, benefits) and was elicited as an ordinal variable in income brackets of US $100,000. Overall, χ2 analysis showed a statistically significant difference in annual total income between male and female dermatologists (P<.0001), with a higher proportion of males in the highest pay bracket (Figure). Gender remained a statistically significant predictor of income on both univariate and multivariate linear regression analyses (P=.0002 and P<.0001, respectively), indicating that gender has a significant impact on compensation, even after controlling for other variables (eTable). Of note, males in this sample were on average older and in practice longer than females (approximately 6 years, P<.0001). However, when univariate linear regression was performed, both age (P=.8281) and number of years since residency or fellowship completion (P=.8743) were not significant predictors of income.
Practice Type—There were no statistically significant differences between men and women in practice type (P=.1489), including academic/university, hospital based, and solo and group private practice; pay structure (P=.1437), including base salary, collection-based salary, or salary plus incentive; holding a supervisory role (P=.0846); or having ownership of a practice (P=.3565)(eTable). Most respondents were in solo or group private practice (58.2%) and had a component of productivity-based compensation (77.5%). In addition, 62% of private practice dermatologists (133/212) had an ownership interest in their practice. As expected, univariate and multivariate regression analyses showed that practice type, pay structure, supervisory roles, and employee vs ownership roles were significant predictors of income (P<.05)(eTable).
Work Productivity—Statistically significant differences were found between men and women in hours worked per week in direct patient care (P<.0001) and in patient visits per week (P=.0052), with a higher percentage of men working more than 40 hours per week and men seeing an average of approximately 22 more patients per week than women. In the subgroup of all dermatologists working more than 40 hours per week, a statistically significant difference in income persisted between males and females (P=.0001). Hours worked per week and patient visits per week were statistically significant predictors of income on both univariate and multivariate regression analyses (P<.05)(Table).
Education and Fellowship Training—No significant difference existed between males and females in type of undergraduate school attended, namely public or private institutions (P=.1090), but a significant difference existed within type of medical school education, with a higher percentage of females attending private medical schools (53.03%) compared to males (38.24%)(P=.0045). However, type of undergraduate or medical school attended had no impact on income (P=.9103). A higher percentage of males (27.32%) completed additional advanced degrees, such as a master of business administration or a master of public health, compared to females (16.9%)(P=.0122). However, the completion of additional advanced degrees had no significant impact on income (P=.2379). No statistical significance existed between males and females in number of residencies completed (P=.3236), and residencies completed had no significant impact on income (P=.4584).
Of 397 respondents, approximately one-third of respondents completed fellowship training (36.5%). Fellowships included dermatopathology, surgery/cosmetics, and other (encompassing complex medical, research, transplant, and pediatric dermatology). Although similar percentages of men and women completed fellowship training, men and women differed significantly by type of fellowship completed (P=.0188). There were similar rates of dermatopathology and surgical fellowship completion between genders but almost 3 times the number of females who completed other fellowships. Type of fellowship training was a statistically significant predictor of income on both univariate and multivariate regression analyses (P<.00001 and P<.0001, respectively).
Work Activity—Respondents were asked to estimate the amount of time devoted to general dermatology, dermatopathology, Mohs micrographic surgery, cosmetics, and dermatologic surgery in their practices (Table). Women devoted a significantly higher average percentage of time to cosmetics (7.89%) compared to men (4.52%)(P=.0097). The number of cosmetic procedures performed per week was not statistically significantly different between men and women (P=.8035) but was a significant factor for income on univariate regression analysis (P=.0002). Time spent performing dermatologic surgery, general dermatology, or Mohs micrographic surgery did not significantly differ between men and women but was found to significantly influence income.
Academic Dermatology—Among the respondents working in academic settings, χ2 analysis identified a significant difference in the faculty rank between males and females, with a tendency for lower academic rank in females (P=.0508). Assistant professorship was comprised of 35% of men vs 51% of women, whereas full professorship consisted of 26% of men but only 13% of women. Academic rank was found to be a significant predictor of income, with higher rank associated with higher income (P<.0001 on univariate regression analysis). However, when adjusting for other factors, academic rank was no longer a significant predictor of income (P=.0840 on multivariate regression analysis). No significant difference existed between men and women in funding received from the National Institutes of Health, conduction of clinical trials, or authorship of scientific publications, and these factors were not found to have a significant impact on income.
Work Leave—Male and female dermatologists showed a statistically significant difference in maternity or Family and Medical Leave Act (FMLA) leave taken over their careers, with 56.03% of females reporting leave taken compared to 6.78% of males (P<.0001). Women reported a significantly higher average number of weeks of maternity or FMLA leave taken over their careers (12.92 weeks) compared to men (2.42 weeks) (P<.0001). However, upon univariate regression analysis, whether or not maternity or FMLA leave was taken over their careers (P=.2005), the number of times that maternity or FMLA leave was taken (P=.4350), and weeks of maternity or FMLA leave taken (P=.4057) were all not significant predictors of income.
Comment
This study sought to investigate the relationship between income and gender in dermatology, and our results demonstrated that statistically significant differences in total annual income exist between male and female dermatologists, with male dermatologists earning a significantly higher income, approximately an additional $80,000. Our results are consistent with other studies of US physician income, which have found a gender gap ranging from $13,399 to $82,000 that persists even when controlling for factors such as specialty choice, practice setting, rank and role in practice, work hours, vacation/leave taken, and others.2-7,10-15
There was a significant difference in rank of male and female academic dermatologists, with fewer females at higher academic ranks. These results are consistent with numerous studies in academic dermatology that show underrepresentation of women at higher academic ranks and leadership positions.8,9,16-18 Poor negotiation may contribute to differences in both rank and income.19,20 There are conflicting data on research productivity of academic dermatologists and length of career, first and senior authorship, and quality and academic impact, all of which add complexity to this topic.8,9,12,16-18,20-23Male and female dermatologists reported significant differences in productivity, with male dermatologists working more hours and seeing more patients per week than female dermatologists. These results are consistent with other studies of dermatologists4,24 and other physicians.12 Regardless, gender was still found to have a significant impact on income even when controlling for differences in productivity and FMLA leave taken. These results are consistent with numerous studies of US physicians that found a gender gap in income even when controlling for hours worked.12,23 Although fellowship training as a whole was found to significantly impact income, our results do not characterize whether the impact on income was positive or negative for each type of fellowship. Fellowship training in specialties such as internal medicine or general surgery likewise has variable effects on income.24,25
A comprehensive survey design and significant data elicited from dermatologists working in private practice for the first time served as the main strengths of this study. Limitations included self-reported design, categorical ranges, and limited sample size in subgroups. Future directions include deeper analysis of subgroups, including fellowship-trained dermatologists, dermatologists working more than 40 hours per week, and female dermatologists by race/ethnicity.
Conclusion
We have demonstrated that self-reported discrepancies in salary between male and female dermatologists exist, with male dermatologists earning a significantly higher annual salary than their female counterparts. This study identified and stratified several career factors that comprise the broad field and practice of dermatology. Even when controlling for these variations, we have demonstrated that gender alone remains a significant predictor of income, indicating that an unexplained income gap between the 2 genders exists in dermatology.
- Association of American Medical Colleges. Table B-2.2: Total Graduates by U.S. Medical School and Sex, 2015-2016 through 2019-2020. December 3, 2020. Accessed October 12, 2021. https://www.aamc.org/download/321532/data/factstableb2-2.pdf
- Willett LL, Halvorsen AJ, McDonald FS, et al. Gender differences in salary of internal medicine residency directors: a national survey. Am J Med. 2015;128:659-665.
- Weeks WB, Wallace AE, Mackenzie TA. Gender differences in anesthesiologists’ annual incomes. Anesthesiology. 2007;106:806-811.
- Weeks WB, Wallace AE. Gender differences in ophthalmologists’ annual incomes. Ophthalmology. 2007;114:1696-1701.
- Singh A, Burke CA, Larive B, et al. Do gender disparities persist in gastroenterology after 10 years of practice? Am J Gastroenterol. 2008;103:1589-1595.
- Desai T, Ali S, Fang X, et al. Equal work for unequal pay: the gender reimbursement gap for healthcare providers in the United States. Postgrad Med J. 2016;92:571-575.
- Jena AB, Olenski AR, Blumenthal DM. Sex differences in physician salary in US public medical schools. JAMA Intern Med. 2016;176:1294-1304.
- John AM, Gupta AB, John ES, et al. A gender-based comparison of promotion and research productivity in academic dermatology. Dermatol Online J. 2016;22:13030/qt1hx610pf.
- Sadeghpour M, Bernstein I, Ko C, et al. Role of sex in academic dermatology: results from a national survey. Arch Dermatol. 2012;148:809-814.
- Gilbert SB, Allshouse A, Skaznik-Wikiel ME. Gender inequality in salaries among reproductive endocrinology and infertility subspecialists in the United States. Fertil Steril. 2019;111:1194-1200.
- Jagsi R, Griffith KA, Stewart A, et al. Gender differences in the salaries of physician researchers. JAMA. 2012;307:2410-2417. doi:10.1001/jama.2012.6183
- Apaydin EA, Chen PGC, Friedberg MW, et al. Differences in physician income by gender in a multiregion survey. J Gen Intern Med. 2018;33:1574-1581.
- Read S, Butkus R, Weissman A, et al. Compensation disparities by gender in internal medicine. Ann Intern Med. 2018;169:658-661.
- Guss ZD, Chen Q, Hu C, et al. Differences in physician compensation between men and women at United States public academic radiation oncology departments. Int J Radiat Oncol Biol Phys. 2019;103:314-319.
- Lo Sasso AT, Richards MR, Chou CF, et al. The $16,819 pay gap for newly trained physicians: the unexplained trend of men earning more than women. Health Aff (Millwood). 2011;30:193-201.
- Shah A, Jalal S, Khosa F. Influences for gender disparity in dermatology in North America. Int J Dermatol. 2018;57:171-176.
- Shi CR, Olbricht S, Vleugels RA, et al. Sex and leadership in academic dermatology: a nationwide survey. J Am Acad Dermatol. 2017;77:782-784.
- Shih AF, Sun W, Yick C, et al. Trends in scholarly productivity of dermatology faculty by academic status and gender. J Am Acad Dermatol. 2019;80:1774-1776.
- Sarfaty S, Kolb D, Barnett R, et al. Negotiation in academic medicine: a necessary career skill. J Womens Health (Larchmt). 2007;16:235-244.
- Jacobson CC, Nguyen JC, Kimball AB. Gender and parenting significantly affect work hours of recent dermatology program graduates. Arch Dermatol. 2004;140:191-196.
- Feramisco JD, Leitenberger JJ, Redfern SI, et al. A gender gap in the dermatology literature? Cross-sectional analysis of manuscript authorship trends in dermatology journals during 3 decades. J Am Acad Dermatol. 2009;60:63-69.
- Bendels MHK, Dietz MC, Brüggmann D, et al. Gender disparities in high-quality dermatology research: a descriptive bibliometric study on scientific authorships. BMJ Open. 2018;8:e020089.
- Seabury SA, Chandra A, Jena AB. Trends in the earnings of male and female health care professionals in the United States, 1987 to 2010. JAMA Intern Med. 2013;173:1748-1750.
- Baimas-George M, Fleischer B, Slakey D, et al. Is it all about the money? Not all surgical subspecialization leads to higher lifetime revenue when compared to general surgery. J Surg Educ. 2017;74:E62-E66.
- Leigh JP, Tancredi D, Jerant A, et al. Lifetime earnings for physicians across specialties. Med Care. 2012;50:1093-1101.
- Association of American Medical Colleges. Table B-2.2: Total Graduates by U.S. Medical School and Sex, 2015-2016 through 2019-2020. December 3, 2020. Accessed October 12, 2021. https://www.aamc.org/download/321532/data/factstableb2-2.pdf
- Willett LL, Halvorsen AJ, McDonald FS, et al. Gender differences in salary of internal medicine residency directors: a national survey. Am J Med. 2015;128:659-665.
- Weeks WB, Wallace AE, Mackenzie TA. Gender differences in anesthesiologists’ annual incomes. Anesthesiology. 2007;106:806-811.
- Weeks WB, Wallace AE. Gender differences in ophthalmologists’ annual incomes. Ophthalmology. 2007;114:1696-1701.
- Singh A, Burke CA, Larive B, et al. Do gender disparities persist in gastroenterology after 10 years of practice? Am J Gastroenterol. 2008;103:1589-1595.
- Desai T, Ali S, Fang X, et al. Equal work for unequal pay: the gender reimbursement gap for healthcare providers in the United States. Postgrad Med J. 2016;92:571-575.
- Jena AB, Olenski AR, Blumenthal DM. Sex differences in physician salary in US public medical schools. JAMA Intern Med. 2016;176:1294-1304.
- John AM, Gupta AB, John ES, et al. A gender-based comparison of promotion and research productivity in academic dermatology. Dermatol Online J. 2016;22:13030/qt1hx610pf.
- Sadeghpour M, Bernstein I, Ko C, et al. Role of sex in academic dermatology: results from a national survey. Arch Dermatol. 2012;148:809-814.
- Gilbert SB, Allshouse A, Skaznik-Wikiel ME. Gender inequality in salaries among reproductive endocrinology and infertility subspecialists in the United States. Fertil Steril. 2019;111:1194-1200.
- Jagsi R, Griffith KA, Stewart A, et al. Gender differences in the salaries of physician researchers. JAMA. 2012;307:2410-2417. doi:10.1001/jama.2012.6183
- Apaydin EA, Chen PGC, Friedberg MW, et al. Differences in physician income by gender in a multiregion survey. J Gen Intern Med. 2018;33:1574-1581.
- Read S, Butkus R, Weissman A, et al. Compensation disparities by gender in internal medicine. Ann Intern Med. 2018;169:658-661.
- Guss ZD, Chen Q, Hu C, et al. Differences in physician compensation between men and women at United States public academic radiation oncology departments. Int J Radiat Oncol Biol Phys. 2019;103:314-319.
- Lo Sasso AT, Richards MR, Chou CF, et al. The $16,819 pay gap for newly trained physicians: the unexplained trend of men earning more than women. Health Aff (Millwood). 2011;30:193-201.
- Shah A, Jalal S, Khosa F. Influences for gender disparity in dermatology in North America. Int J Dermatol. 2018;57:171-176.
- Shi CR, Olbricht S, Vleugels RA, et al. Sex and leadership in academic dermatology: a nationwide survey. J Am Acad Dermatol. 2017;77:782-784.
- Shih AF, Sun W, Yick C, et al. Trends in scholarly productivity of dermatology faculty by academic status and gender. J Am Acad Dermatol. 2019;80:1774-1776.
- Sarfaty S, Kolb D, Barnett R, et al. Negotiation in academic medicine: a necessary career skill. J Womens Health (Larchmt). 2007;16:235-244.
- Jacobson CC, Nguyen JC, Kimball AB. Gender and parenting significantly affect work hours of recent dermatology program graduates. Arch Dermatol. 2004;140:191-196.
- Feramisco JD, Leitenberger JJ, Redfern SI, et al. A gender gap in the dermatology literature? Cross-sectional analysis of manuscript authorship trends in dermatology journals during 3 decades. J Am Acad Dermatol. 2009;60:63-69.
- Bendels MHK, Dietz MC, Brüggmann D, et al. Gender disparities in high-quality dermatology research: a descriptive bibliometric study on scientific authorships. BMJ Open. 2018;8:e020089.
- Seabury SA, Chandra A, Jena AB. Trends in the earnings of male and female health care professionals in the United States, 1987 to 2010. JAMA Intern Med. 2013;173:1748-1750.
- Baimas-George M, Fleischer B, Slakey D, et al. Is it all about the money? Not all surgical subspecialization leads to higher lifetime revenue when compared to general surgery. J Surg Educ. 2017;74:E62-E66.
- Leigh JP, Tancredi D, Jerant A, et al. Lifetime earnings for physicians across specialties. Med Care. 2012;50:1093-1101.
Practice Points
- In this survey-based cross-sectional study, a statistically significant income disparity between male and female dermatologists was found.
- Although several differences were identified between male and female dermatologists that contribute to income, gender remained a statistically significant predictor of income, and this disparity could not be explained by other factors.
Sickle cell raises risk for stillbirth
Both sickle cell trait and sickle cell disease were significantly associated with an increased risk of stillbirth, based on data from more than 50,000 women.
Pregnant women with sickle cell disease (SCD) are at increased risk of complications, including stillbirth, but many women with the disease in the United States lack access to specialty care, Silvia P. Canelón, PhD, of the University of Pennsylvania, Philadelphia, and colleagues wrote. Sickle cell trait (SCT), defined as one abnormal allele of the hemoglobin gene, is not considered a disease state because many carriers are asymptomatic, and therefore even less likely to be assessed for potential complications. “However, it is possible for people with SCT to experience sickling of red blood cells under severe hypoxia, dehydration, and hyperthermia. This condition can lead to severe medical complications for sickle cell carriers, including fetal loss, splenic infarction, exercise-related sudden death, and others,” they noted.
In a study published in JAMA Network Open, the researchers reviewed data from 63,334 deliveries in 50,560 women between Jan. 1, 2010, and Aug. 15, 2017, at four quaternary academic medical centers in Pennsylvania. Of these, 1,904 had SCT but not SCD, and 164 had SCD. The mean age of the women was 29.5 years, and approximately 56% were single at the time of delivery. A majority (87%) of the study population was Rhesus-factor positive, 47.0% were Black or African American, 33.7% were White, and 45.2% had ABO blood type O.
Risk factors for stillbirth used in the analysis included SCD, numbers of pain crises and blood transfusions before delivery, delivery episode (to represent parity), history of cesarean delivery, multiple gestation, age, marital status, race and ethnicity, ABO blood type, Rhesus factor, and year of delivery.
Overall, the prevalence of stillbirth in women with SCT was 1.1%, compared with 0.8% in the general study population, and was significantly associated with increased risk of stillbirth after controlling for multiple risk factors. The adjusted odds ratio was 8.94 for stillbirth risk in women with SCT, compared with women without SCT (P = .045), although the risk was greater among women with SCD, compared with those without SCD (aOR, 26.40).
“In addition, the stratified analysis found Black or African American patients with SCD to be at higher risk of stillbirth, compared with Black or African American patients without SCD (aOR, 3.59),” but no significant association was noted between stillbirth and SCT, the researchers wrote. Stillbirth rates were 1.1% in Black or African American women overall, 2.7% in those with SCD, and 1.0% in those with SCT. Overall, multiple gestation was associated with an increased risk of stillbirth (aOR, 4.68), while a history of cesarean delivery and being married at the time of delivery were associated with decreased risk (aOR, 0.44 and 0.72, respectively).
The lack of association between stillbirth and SCT in Black or African American patients supports some previous research, but contradicts other studies, the researchers wrote. “Ultimately, it may be impossible to disentangle the risks due to the disease and those due to disparities associated with the disease that have resulted from longstanding inequity and stigma,” they said. The findings also suggest that biological mechanisms of SCT may contribute to severe clinical complications, and therefore “invite a more critical examination of the assumption that SCT is not a disease state.”
The study findings were limited by several factors including the lack of assessment of SCT independent of other comorbidities, such as hypertension, preeclampsia, diabetes, and obesity, and by the use of billing codes that could misclassify patients, the researchers noted.
However, the results support some findings from previous studies of the potential health complications for pregnant SCT patients. The large study population highlights the need to identify women’s SCT status during obstetric care, and to provide both pregnancy guidance for SCT patients and systemic support of comprehensive care for SCD and SCT patients, they concluded.
Disparities may drive stillbirth in sickle cell trait women
“There is a paucity of research evaluating sickle cell trait and the risk of adverse pregnancy outcomes such as stillbirth,” Iris Krishna, MD, of Emory University, Atlanta, said in an interview. “Prior studies evaluating the risk of stillbirth have yielded mixed results, and an increased risk of stillbirth in women with sickle cell trait has not been established. This study is unique in that it attempts to address how racial inequities and health disparities may contribute to risk of stillbirth in women with sickle cell trait.”
Although the study findings suggest an increased risk of stillbirth in women with sickle cell trait, an analysis stratified for Black or African American patients showed no association, Dr. Krishna said. “The prevalence of stillbirth was noted to be 1% among Black or African American patients with sickle cell trait compared to the prevalence of stillbirth of 1.1% among Black or African American women with no sickle cell trait or disease. Although, sickle cell trait or sickle cell disease can be found in any racial or ethnic group, it disproportionately affects Black or African Americans, with a sickle cell trait carrier rate of approximately 1 in 10. The mixed findings in this study amongst racial/ethnic groups further suggest that there is more research needed before an association between stillbirth and sickle cell trait can be supported.”
As for clinical implications, “it is well established that for women with sickle cell trait there is an increased risk of urinary tract infections in pregnancy,” said Dr. Krishna. “Women with sickle cell trait should have a urine culture performed at their first prenatal visit and each trimester. At this time, studies evaluating risk of stillbirth in women with sickle cell trait have yielded conflicting results, and current consensus is that women with sickle cell trait are not at increased risk. In comparison, women with sickle cell disease are at increased risk for stillbirth and adverse pregnancy outcomes. Women with sickle cell disease should be followed closely during pregnancy and fetal surveillance implemented at 32 weeks, if not sooner, to reduce risk of stillbirth.
“Prior studies evaluating risk of stillbirth in women with sickle cell trait consist of retrospective cohorts with small study populations,” Dr. Krishna added. Notably, the current study was limited by the inability to adjust for comorbidities including diabetes, hypertension, and obesity, that are not only associated with an increased risk for stillbirth, but also disproportionately common among Black women.
“More studies are needed evaluating the relationship between these comorbidities as well as studies specifically evaluating how race affects care and pregnancy outcomes,” Dr. Krisha emphasized.
The study was funded by the University of Pennsylvania department of biostatistics, epidemiology, and informatics. Lead author Dr. Canelón disclosed grants from the Centers for Disease Control and Prevention, Clinical and Translational Science Awards, and grants from the National Institutes of Health outside the submitted work. Dr. Krishna had no financial conflicts to disclose, but serves on the editorial advisory board of Ob.Gyn News.
Both sickle cell trait and sickle cell disease were significantly associated with an increased risk of stillbirth, based on data from more than 50,000 women.
Pregnant women with sickle cell disease (SCD) are at increased risk of complications, including stillbirth, but many women with the disease in the United States lack access to specialty care, Silvia P. Canelón, PhD, of the University of Pennsylvania, Philadelphia, and colleagues wrote. Sickle cell trait (SCT), defined as one abnormal allele of the hemoglobin gene, is not considered a disease state because many carriers are asymptomatic, and therefore even less likely to be assessed for potential complications. “However, it is possible for people with SCT to experience sickling of red blood cells under severe hypoxia, dehydration, and hyperthermia. This condition can lead to severe medical complications for sickle cell carriers, including fetal loss, splenic infarction, exercise-related sudden death, and others,” they noted.
In a study published in JAMA Network Open, the researchers reviewed data from 63,334 deliveries in 50,560 women between Jan. 1, 2010, and Aug. 15, 2017, at four quaternary academic medical centers in Pennsylvania. Of these, 1,904 had SCT but not SCD, and 164 had SCD. The mean age of the women was 29.5 years, and approximately 56% were single at the time of delivery. A majority (87%) of the study population was Rhesus-factor positive, 47.0% were Black or African American, 33.7% were White, and 45.2% had ABO blood type O.
Risk factors for stillbirth used in the analysis included SCD, numbers of pain crises and blood transfusions before delivery, delivery episode (to represent parity), history of cesarean delivery, multiple gestation, age, marital status, race and ethnicity, ABO blood type, Rhesus factor, and year of delivery.
Overall, the prevalence of stillbirth in women with SCT was 1.1%, compared with 0.8% in the general study population, and was significantly associated with increased risk of stillbirth after controlling for multiple risk factors. The adjusted odds ratio was 8.94 for stillbirth risk in women with SCT, compared with women without SCT (P = .045), although the risk was greater among women with SCD, compared with those without SCD (aOR, 26.40).
“In addition, the stratified analysis found Black or African American patients with SCD to be at higher risk of stillbirth, compared with Black or African American patients without SCD (aOR, 3.59),” but no significant association was noted between stillbirth and SCT, the researchers wrote. Stillbirth rates were 1.1% in Black or African American women overall, 2.7% in those with SCD, and 1.0% in those with SCT. Overall, multiple gestation was associated with an increased risk of stillbirth (aOR, 4.68), while a history of cesarean delivery and being married at the time of delivery were associated with decreased risk (aOR, 0.44 and 0.72, respectively).
The lack of association between stillbirth and SCT in Black or African American patients supports some previous research, but contradicts other studies, the researchers wrote. “Ultimately, it may be impossible to disentangle the risks due to the disease and those due to disparities associated with the disease that have resulted from longstanding inequity and stigma,” they said. The findings also suggest that biological mechanisms of SCT may contribute to severe clinical complications, and therefore “invite a more critical examination of the assumption that SCT is not a disease state.”
The study findings were limited by several factors including the lack of assessment of SCT independent of other comorbidities, such as hypertension, preeclampsia, diabetes, and obesity, and by the use of billing codes that could misclassify patients, the researchers noted.
However, the results support some findings from previous studies of the potential health complications for pregnant SCT patients. The large study population highlights the need to identify women’s SCT status during obstetric care, and to provide both pregnancy guidance for SCT patients and systemic support of comprehensive care for SCD and SCT patients, they concluded.
Disparities may drive stillbirth in sickle cell trait women
“There is a paucity of research evaluating sickle cell trait and the risk of adverse pregnancy outcomes such as stillbirth,” Iris Krishna, MD, of Emory University, Atlanta, said in an interview. “Prior studies evaluating the risk of stillbirth have yielded mixed results, and an increased risk of stillbirth in women with sickle cell trait has not been established. This study is unique in that it attempts to address how racial inequities and health disparities may contribute to risk of stillbirth in women with sickle cell trait.”
Although the study findings suggest an increased risk of stillbirth in women with sickle cell trait, an analysis stratified for Black or African American patients showed no association, Dr. Krishna said. “The prevalence of stillbirth was noted to be 1% among Black or African American patients with sickle cell trait compared to the prevalence of stillbirth of 1.1% among Black or African American women with no sickle cell trait or disease. Although, sickle cell trait or sickle cell disease can be found in any racial or ethnic group, it disproportionately affects Black or African Americans, with a sickle cell trait carrier rate of approximately 1 in 10. The mixed findings in this study amongst racial/ethnic groups further suggest that there is more research needed before an association between stillbirth and sickle cell trait can be supported.”
As for clinical implications, “it is well established that for women with sickle cell trait there is an increased risk of urinary tract infections in pregnancy,” said Dr. Krishna. “Women with sickle cell trait should have a urine culture performed at their first prenatal visit and each trimester. At this time, studies evaluating risk of stillbirth in women with sickle cell trait have yielded conflicting results, and current consensus is that women with sickle cell trait are not at increased risk. In comparison, women with sickle cell disease are at increased risk for stillbirth and adverse pregnancy outcomes. Women with sickle cell disease should be followed closely during pregnancy and fetal surveillance implemented at 32 weeks, if not sooner, to reduce risk of stillbirth.
“Prior studies evaluating risk of stillbirth in women with sickle cell trait consist of retrospective cohorts with small study populations,” Dr. Krishna added. Notably, the current study was limited by the inability to adjust for comorbidities including diabetes, hypertension, and obesity, that are not only associated with an increased risk for stillbirth, but also disproportionately common among Black women.
“More studies are needed evaluating the relationship between these comorbidities as well as studies specifically evaluating how race affects care and pregnancy outcomes,” Dr. Krisha emphasized.
The study was funded by the University of Pennsylvania department of biostatistics, epidemiology, and informatics. Lead author Dr. Canelón disclosed grants from the Centers for Disease Control and Prevention, Clinical and Translational Science Awards, and grants from the National Institutes of Health outside the submitted work. Dr. Krishna had no financial conflicts to disclose, but serves on the editorial advisory board of Ob.Gyn News.
Both sickle cell trait and sickle cell disease were significantly associated with an increased risk of stillbirth, based on data from more than 50,000 women.
Pregnant women with sickle cell disease (SCD) are at increased risk of complications, including stillbirth, but many women with the disease in the United States lack access to specialty care, Silvia P. Canelón, PhD, of the University of Pennsylvania, Philadelphia, and colleagues wrote. Sickle cell trait (SCT), defined as one abnormal allele of the hemoglobin gene, is not considered a disease state because many carriers are asymptomatic, and therefore even less likely to be assessed for potential complications. “However, it is possible for people with SCT to experience sickling of red blood cells under severe hypoxia, dehydration, and hyperthermia. This condition can lead to severe medical complications for sickle cell carriers, including fetal loss, splenic infarction, exercise-related sudden death, and others,” they noted.
In a study published in JAMA Network Open, the researchers reviewed data from 63,334 deliveries in 50,560 women between Jan. 1, 2010, and Aug. 15, 2017, at four quaternary academic medical centers in Pennsylvania. Of these, 1,904 had SCT but not SCD, and 164 had SCD. The mean age of the women was 29.5 years, and approximately 56% were single at the time of delivery. A majority (87%) of the study population was Rhesus-factor positive, 47.0% were Black or African American, 33.7% were White, and 45.2% had ABO blood type O.
Risk factors for stillbirth used in the analysis included SCD, numbers of pain crises and blood transfusions before delivery, delivery episode (to represent parity), history of cesarean delivery, multiple gestation, age, marital status, race and ethnicity, ABO blood type, Rhesus factor, and year of delivery.
Overall, the prevalence of stillbirth in women with SCT was 1.1%, compared with 0.8% in the general study population, and was significantly associated with increased risk of stillbirth after controlling for multiple risk factors. The adjusted odds ratio was 8.94 for stillbirth risk in women with SCT, compared with women without SCT (P = .045), although the risk was greater among women with SCD, compared with those without SCD (aOR, 26.40).
“In addition, the stratified analysis found Black or African American patients with SCD to be at higher risk of stillbirth, compared with Black or African American patients without SCD (aOR, 3.59),” but no significant association was noted between stillbirth and SCT, the researchers wrote. Stillbirth rates were 1.1% in Black or African American women overall, 2.7% in those with SCD, and 1.0% in those with SCT. Overall, multiple gestation was associated with an increased risk of stillbirth (aOR, 4.68), while a history of cesarean delivery and being married at the time of delivery were associated with decreased risk (aOR, 0.44 and 0.72, respectively).
The lack of association between stillbirth and SCT in Black or African American patients supports some previous research, but contradicts other studies, the researchers wrote. “Ultimately, it may be impossible to disentangle the risks due to the disease and those due to disparities associated with the disease that have resulted from longstanding inequity and stigma,” they said. The findings also suggest that biological mechanisms of SCT may contribute to severe clinical complications, and therefore “invite a more critical examination of the assumption that SCT is not a disease state.”
The study findings were limited by several factors including the lack of assessment of SCT independent of other comorbidities, such as hypertension, preeclampsia, diabetes, and obesity, and by the use of billing codes that could misclassify patients, the researchers noted.
However, the results support some findings from previous studies of the potential health complications for pregnant SCT patients. The large study population highlights the need to identify women’s SCT status during obstetric care, and to provide both pregnancy guidance for SCT patients and systemic support of comprehensive care for SCD and SCT patients, they concluded.
Disparities may drive stillbirth in sickle cell trait women
“There is a paucity of research evaluating sickle cell trait and the risk of adverse pregnancy outcomes such as stillbirth,” Iris Krishna, MD, of Emory University, Atlanta, said in an interview. “Prior studies evaluating the risk of stillbirth have yielded mixed results, and an increased risk of stillbirth in women with sickle cell trait has not been established. This study is unique in that it attempts to address how racial inequities and health disparities may contribute to risk of stillbirth in women with sickle cell trait.”
Although the study findings suggest an increased risk of stillbirth in women with sickle cell trait, an analysis stratified for Black or African American patients showed no association, Dr. Krishna said. “The prevalence of stillbirth was noted to be 1% among Black or African American patients with sickle cell trait compared to the prevalence of stillbirth of 1.1% among Black or African American women with no sickle cell trait or disease. Although, sickle cell trait or sickle cell disease can be found in any racial or ethnic group, it disproportionately affects Black or African Americans, with a sickle cell trait carrier rate of approximately 1 in 10. The mixed findings in this study amongst racial/ethnic groups further suggest that there is more research needed before an association between stillbirth and sickle cell trait can be supported.”
As for clinical implications, “it is well established that for women with sickle cell trait there is an increased risk of urinary tract infections in pregnancy,” said Dr. Krishna. “Women with sickle cell trait should have a urine culture performed at their first prenatal visit and each trimester. At this time, studies evaluating risk of stillbirth in women with sickle cell trait have yielded conflicting results, and current consensus is that women with sickle cell trait are not at increased risk. In comparison, women with sickle cell disease are at increased risk for stillbirth and adverse pregnancy outcomes. Women with sickle cell disease should be followed closely during pregnancy and fetal surveillance implemented at 32 weeks, if not sooner, to reduce risk of stillbirth.
“Prior studies evaluating risk of stillbirth in women with sickle cell trait consist of retrospective cohorts with small study populations,” Dr. Krishna added. Notably, the current study was limited by the inability to adjust for comorbidities including diabetes, hypertension, and obesity, that are not only associated with an increased risk for stillbirth, but also disproportionately common among Black women.
“More studies are needed evaluating the relationship between these comorbidities as well as studies specifically evaluating how race affects care and pregnancy outcomes,” Dr. Krisha emphasized.
The study was funded by the University of Pennsylvania department of biostatistics, epidemiology, and informatics. Lead author Dr. Canelón disclosed grants from the Centers for Disease Control and Prevention, Clinical and Translational Science Awards, and grants from the National Institutes of Health outside the submitted work. Dr. Krishna had no financial conflicts to disclose, but serves on the editorial advisory board of Ob.Gyn News.
FROM JAMA NETWORK OPEN