Increased risk for severe COVID-19 in rheumatoid arthritis and its phenotypic subgroups

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Key clinical point: Patients with rheumatoid arthritis (RA), including those across different phenotypic subgroups, were at an increased risk for severe COVID-19 compared with patients without RA, with a pronounced association being observed in patients with RA-associated interstitial lung disease (RA-ILD).

 

Major finding: Risk for severe COVID-19 was significantly higher in patients with RA vs. those without RA (adjusted hazard ratio [aHR], 1.75; P < .0001). Risk was persistent among the sub-group of patients who were seropositive (aHR, 1.97; P < .0001) or had erosive disease (aHR, 1.93; P < .0001) and most prominent among patients with RA-ILD (aHR, 2.50; P < .0001).

 

Study details: Findings are from a retrospective study of 582 patients with RA and 2,875 matched comparators without RA, all of whom had COVID-19.

 

Disclosures: This study did not receive any funding. Some authors reported receiving research support, consulting fees, and/or grants unrelated to this study from various sources.

 

Source: Figueroa-Parra G et al. Risk of severe COVID-19 outcomes associated with rheumatoid arthritis and phenotypic subgroups: A retrospective, comparative, multicentre cohort study. Lancet Rheumatol. 2022 (Sep 13). Doi: 10.1016/S2665-9913(22)00227-2.

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Key clinical point: Patients with rheumatoid arthritis (RA), including those across different phenotypic subgroups, were at an increased risk for severe COVID-19 compared with patients without RA, with a pronounced association being observed in patients with RA-associated interstitial lung disease (RA-ILD).

 

Major finding: Risk for severe COVID-19 was significantly higher in patients with RA vs. those without RA (adjusted hazard ratio [aHR], 1.75; P < .0001). Risk was persistent among the sub-group of patients who were seropositive (aHR, 1.97; P < .0001) or had erosive disease (aHR, 1.93; P < .0001) and most prominent among patients with RA-ILD (aHR, 2.50; P < .0001).

 

Study details: Findings are from a retrospective study of 582 patients with RA and 2,875 matched comparators without RA, all of whom had COVID-19.

 

Disclosures: This study did not receive any funding. Some authors reported receiving research support, consulting fees, and/or grants unrelated to this study from various sources.

 

Source: Figueroa-Parra G et al. Risk of severe COVID-19 outcomes associated with rheumatoid arthritis and phenotypic subgroups: A retrospective, comparative, multicentre cohort study. Lancet Rheumatol. 2022 (Sep 13). Doi: 10.1016/S2665-9913(22)00227-2.

Key clinical point: Patients with rheumatoid arthritis (RA), including those across different phenotypic subgroups, were at an increased risk for severe COVID-19 compared with patients without RA, with a pronounced association being observed in patients with RA-associated interstitial lung disease (RA-ILD).

 

Major finding: Risk for severe COVID-19 was significantly higher in patients with RA vs. those without RA (adjusted hazard ratio [aHR], 1.75; P < .0001). Risk was persistent among the sub-group of patients who were seropositive (aHR, 1.97; P < .0001) or had erosive disease (aHR, 1.93; P < .0001) and most prominent among patients with RA-ILD (aHR, 2.50; P < .0001).

 

Study details: Findings are from a retrospective study of 582 patients with RA and 2,875 matched comparators without RA, all of whom had COVID-19.

 

Disclosures: This study did not receive any funding. Some authors reported receiving research support, consulting fees, and/or grants unrelated to this study from various sources.

 

Source: Figueroa-Parra G et al. Risk of severe COVID-19 outcomes associated with rheumatoid arthritis and phenotypic subgroups: A retrospective, comparative, multicentre cohort study. Lancet Rheumatol. 2022 (Sep 13). Doi: 10.1016/S2665-9913(22)00227-2.

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VA Gets it Right on Suicide

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Ignore the critics, it’s America’s Warrior Partnership, not VA, whose veteran suicide data and conclusions are faulty

For years, the US Department of Veterans Affairs (VA) has painstakingly labored to track, research, and address veteran suicide. Their exceptional work was dealt an unwarranted blow a month ago with the publication of an incomplete report entitled Operation Deep Dive (OpDD). The $3.9 million study from America’s Warrior Partnership (AWP) examined death data of former service members in 8 states between 2014 and 2018. The interim report criticized the VA for minimizing the extent of veteran suicide, asserting, “former service members take their own lives each year at a rate approximately 2.4 times greater than previously reported by the VA.”

The sensational results were accepted at face value and immediately garnered negative nationwide headlines, with lawmakers, media outlets, and veterans rushing to impugn the VA. Senate Committee on Veterans’ Affairs Ranking Republican Member Jerry Moran of Kansas opined, “The disparity between the numbers of veteran suicides reported by the VA and [OpDD] is concerning. We need an honest assessment of the scope of the problem.” A U.S. Medicine headline stated “VA undercounted thousands of veteran suicides. [OpDD] posited daily suicide rate is 240% higher.” Fox News declared, “Veterans committing suicide at rate 2 times higher than VA data show: study,” as did Military Times, “Veterans suicide rate may be double federal estimates, study suggests.”

Disturbingly, those who echoed AWP’s claims got the story backward. It’s AWP, not VA, whose suicide data and conclusions are faulty.

For starters, the VA data encompasses veterans across all 50 states, the District of Columbia, Puerto Rico, and the US Virgin Islands. In contrast, AWP inferred national veteran suicide figures based on partial, skewed data. As delineated by researchers in an in-press Military Medicine letter to the Editor, 7 of the 8 states sampled (Alabama, Florida, Maine, Massachusetts, Michigan, Minnesota, Montana, and Oregon) had suicide rates above the national average for the years under investigation. This factor alone overinflates AWP’s purported suicide numbers.

Additionally, AWP altered the definition of “taking one’s life” and then misapplied that designation. Conventionally, the term refers to suicide, but AWP used it to also include nonnatural deaths assessed by coroners and medical examiners as accidental or undetermined. Two examples of this self-injury mortality (SIM) are opioid overdoses and single-driver car crash deaths. AWP added suicides and SIMs to derive a total number of veterans who took their life and falsely contrasted that aggregate against the VA count of suicides. That’s like comparing the whole category of fruit to the subcategory of apples.

AWP should be applauded for drawing attention to and accounting for accidental and undetermined deaths. However, the standard protocol is to consider SIMs distinctly from suicides. Among the many reasons for precise labeling is so that grieving family members aren’t mistakenly informed that their loved one died by suicide. VA conveys the rate of veteran overdose deaths in separate reports, for example, the Veteran Drug Overdose Mortality, 2010-2019 publication. Those numbers were ignored in AWP’s calculations.

AWP was neglectful in another way. The second phase of the project—a deep examination of community-level factors preceding suicides and nonnatural deaths—began in 2019. This information was collected and analyzed through sociocultural death investigation (SDI) interviews of 3 to 4 family members, friends, and colleagues of the deceased. SDIs consisted of 19 factors, such as history of the veteran’s mental health problems, social connectedness, finances, group memberships, and access to firearms. However, the interim report omitted the preliminary analysis of these factors, which AWP stated would be made available this year.

OpDD conclusions were so unfounded that AWP’s analytic research partner, the University of Alabama, distanced itself from the interim report. “We were not consulted on the released figures,” Dr. Karl Hamner, the University of Alabama principal investigator on the study, told me. “We did not make any conclusions and we don’t endorse the reported findings about national rates or numbers per day. Nor did we make any statements about the VA’s data.”

As it happens, the VA’s 2022 National Veteran Suicide Prevention Annual Report was issued the same week as the OpDD report. VA found that veteran suicides decreased by 9.7% over the last 2 years, nearly twice the decrease for nonveterans. Yet, in a contemporaneous hearing of the House Committee on Veterans’ Affairs, AWP’s President and CEO Jim Lorraine testified that the progress preventing veteran suicide was “a disgrace” and “a failure.” He misattributed that it was VA (not AWP) that “must be more open and transparent about their data.”

Unsupported denigration of the VA tarnishes its reputation, undermining veterans’ trust in the health care system and increasing barriers to seeking needed services. More broadly, it fortifies those forces who wish to redirect allocations away from VA and towards non-VA veterans’ entities like AWP. The media and other stakeholders must take a lesson about getting the story straight before reflexively amplifying false accusations about the VA. Veterans deserve better.

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Russell Lemle is a Senior Policy Analyst, Veterans Healthcare Policy Institute

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Ignore the critics, it’s America’s Warrior Partnership, not VA, whose veteran suicide data and conclusions are faulty
Ignore the critics, it’s America’s Warrior Partnership, not VA, whose veteran suicide data and conclusions are faulty

For years, the US Department of Veterans Affairs (VA) has painstakingly labored to track, research, and address veteran suicide. Their exceptional work was dealt an unwarranted blow a month ago with the publication of an incomplete report entitled Operation Deep Dive (OpDD). The $3.9 million study from America’s Warrior Partnership (AWP) examined death data of former service members in 8 states between 2014 and 2018. The interim report criticized the VA for minimizing the extent of veteran suicide, asserting, “former service members take their own lives each year at a rate approximately 2.4 times greater than previously reported by the VA.”

The sensational results were accepted at face value and immediately garnered negative nationwide headlines, with lawmakers, media outlets, and veterans rushing to impugn the VA. Senate Committee on Veterans’ Affairs Ranking Republican Member Jerry Moran of Kansas opined, “The disparity between the numbers of veteran suicides reported by the VA and [OpDD] is concerning. We need an honest assessment of the scope of the problem.” A U.S. Medicine headline stated “VA undercounted thousands of veteran suicides. [OpDD] posited daily suicide rate is 240% higher.” Fox News declared, “Veterans committing suicide at rate 2 times higher than VA data show: study,” as did Military Times, “Veterans suicide rate may be double federal estimates, study suggests.”

Disturbingly, those who echoed AWP’s claims got the story backward. It’s AWP, not VA, whose suicide data and conclusions are faulty.

For starters, the VA data encompasses veterans across all 50 states, the District of Columbia, Puerto Rico, and the US Virgin Islands. In contrast, AWP inferred national veteran suicide figures based on partial, skewed data. As delineated by researchers in an in-press Military Medicine letter to the Editor, 7 of the 8 states sampled (Alabama, Florida, Maine, Massachusetts, Michigan, Minnesota, Montana, and Oregon) had suicide rates above the national average for the years under investigation. This factor alone overinflates AWP’s purported suicide numbers.

Additionally, AWP altered the definition of “taking one’s life” and then misapplied that designation. Conventionally, the term refers to suicide, but AWP used it to also include nonnatural deaths assessed by coroners and medical examiners as accidental or undetermined. Two examples of this self-injury mortality (SIM) are opioid overdoses and single-driver car crash deaths. AWP added suicides and SIMs to derive a total number of veterans who took their life and falsely contrasted that aggregate against the VA count of suicides. That’s like comparing the whole category of fruit to the subcategory of apples.

AWP should be applauded for drawing attention to and accounting for accidental and undetermined deaths. However, the standard protocol is to consider SIMs distinctly from suicides. Among the many reasons for precise labeling is so that grieving family members aren’t mistakenly informed that their loved one died by suicide. VA conveys the rate of veteran overdose deaths in separate reports, for example, the Veteran Drug Overdose Mortality, 2010-2019 publication. Those numbers were ignored in AWP’s calculations.

AWP was neglectful in another way. The second phase of the project—a deep examination of community-level factors preceding suicides and nonnatural deaths—began in 2019. This information was collected and analyzed through sociocultural death investigation (SDI) interviews of 3 to 4 family members, friends, and colleagues of the deceased. SDIs consisted of 19 factors, such as history of the veteran’s mental health problems, social connectedness, finances, group memberships, and access to firearms. However, the interim report omitted the preliminary analysis of these factors, which AWP stated would be made available this year.

OpDD conclusions were so unfounded that AWP’s analytic research partner, the University of Alabama, distanced itself from the interim report. “We were not consulted on the released figures,” Dr. Karl Hamner, the University of Alabama principal investigator on the study, told me. “We did not make any conclusions and we don’t endorse the reported findings about national rates or numbers per day. Nor did we make any statements about the VA’s data.”

As it happens, the VA’s 2022 National Veteran Suicide Prevention Annual Report was issued the same week as the OpDD report. VA found that veteran suicides decreased by 9.7% over the last 2 years, nearly twice the decrease for nonveterans. Yet, in a contemporaneous hearing of the House Committee on Veterans’ Affairs, AWP’s President and CEO Jim Lorraine testified that the progress preventing veteran suicide was “a disgrace” and “a failure.” He misattributed that it was VA (not AWP) that “must be more open and transparent about their data.”

Unsupported denigration of the VA tarnishes its reputation, undermining veterans’ trust in the health care system and increasing barriers to seeking needed services. More broadly, it fortifies those forces who wish to redirect allocations away from VA and towards non-VA veterans’ entities like AWP. The media and other stakeholders must take a lesson about getting the story straight before reflexively amplifying false accusations about the VA. Veterans deserve better.

For years, the US Department of Veterans Affairs (VA) has painstakingly labored to track, research, and address veteran suicide. Their exceptional work was dealt an unwarranted blow a month ago with the publication of an incomplete report entitled Operation Deep Dive (OpDD). The $3.9 million study from America’s Warrior Partnership (AWP) examined death data of former service members in 8 states between 2014 and 2018. The interim report criticized the VA for minimizing the extent of veteran suicide, asserting, “former service members take their own lives each year at a rate approximately 2.4 times greater than previously reported by the VA.”

The sensational results were accepted at face value and immediately garnered negative nationwide headlines, with lawmakers, media outlets, and veterans rushing to impugn the VA. Senate Committee on Veterans’ Affairs Ranking Republican Member Jerry Moran of Kansas opined, “The disparity between the numbers of veteran suicides reported by the VA and [OpDD] is concerning. We need an honest assessment of the scope of the problem.” A U.S. Medicine headline stated “VA undercounted thousands of veteran suicides. [OpDD] posited daily suicide rate is 240% higher.” Fox News declared, “Veterans committing suicide at rate 2 times higher than VA data show: study,” as did Military Times, “Veterans suicide rate may be double federal estimates, study suggests.”

Disturbingly, those who echoed AWP’s claims got the story backward. It’s AWP, not VA, whose suicide data and conclusions are faulty.

For starters, the VA data encompasses veterans across all 50 states, the District of Columbia, Puerto Rico, and the US Virgin Islands. In contrast, AWP inferred national veteran suicide figures based on partial, skewed data. As delineated by researchers in an in-press Military Medicine letter to the Editor, 7 of the 8 states sampled (Alabama, Florida, Maine, Massachusetts, Michigan, Minnesota, Montana, and Oregon) had suicide rates above the national average for the years under investigation. This factor alone overinflates AWP’s purported suicide numbers.

Additionally, AWP altered the definition of “taking one’s life” and then misapplied that designation. Conventionally, the term refers to suicide, but AWP used it to also include nonnatural deaths assessed by coroners and medical examiners as accidental or undetermined. Two examples of this self-injury mortality (SIM) are opioid overdoses and single-driver car crash deaths. AWP added suicides and SIMs to derive a total number of veterans who took their life and falsely contrasted that aggregate against the VA count of suicides. That’s like comparing the whole category of fruit to the subcategory of apples.

AWP should be applauded for drawing attention to and accounting for accidental and undetermined deaths. However, the standard protocol is to consider SIMs distinctly from suicides. Among the many reasons for precise labeling is so that grieving family members aren’t mistakenly informed that their loved one died by suicide. VA conveys the rate of veteran overdose deaths in separate reports, for example, the Veteran Drug Overdose Mortality, 2010-2019 publication. Those numbers were ignored in AWP’s calculations.

AWP was neglectful in another way. The second phase of the project—a deep examination of community-level factors preceding suicides and nonnatural deaths—began in 2019. This information was collected and analyzed through sociocultural death investigation (SDI) interviews of 3 to 4 family members, friends, and colleagues of the deceased. SDIs consisted of 19 factors, such as history of the veteran’s mental health problems, social connectedness, finances, group memberships, and access to firearms. However, the interim report omitted the preliminary analysis of these factors, which AWP stated would be made available this year.

OpDD conclusions were so unfounded that AWP’s analytic research partner, the University of Alabama, distanced itself from the interim report. “We were not consulted on the released figures,” Dr. Karl Hamner, the University of Alabama principal investigator on the study, told me. “We did not make any conclusions and we don’t endorse the reported findings about national rates or numbers per day. Nor did we make any statements about the VA’s data.”

As it happens, the VA’s 2022 National Veteran Suicide Prevention Annual Report was issued the same week as the OpDD report. VA found that veteran suicides decreased by 9.7% over the last 2 years, nearly twice the decrease for nonveterans. Yet, in a contemporaneous hearing of the House Committee on Veterans’ Affairs, AWP’s President and CEO Jim Lorraine testified that the progress preventing veteran suicide was “a disgrace” and “a failure.” He misattributed that it was VA (not AWP) that “must be more open and transparent about their data.”

Unsupported denigration of the VA tarnishes its reputation, undermining veterans’ trust in the health care system and increasing barriers to seeking needed services. More broadly, it fortifies those forces who wish to redirect allocations away from VA and towards non-VA veterans’ entities like AWP. The media and other stakeholders must take a lesson about getting the story straight before reflexively amplifying false accusations about the VA. Veterans deserve better.

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A gender primer for psychiatrists

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A gender primer for psychiatrists

Psychiatrists have a long tradition of supporting LGBTQAI+ (lesbian, gay, bisexual, transgender, queer/questioning, asexual, intersex, and others) persons. In professional and public settings, we are educators, role models, and advocates for self-expression and personal empowerment. By better educating ourselves on the topic of gender and its variations, we can become champions of gender-affirming care.

Sex vs gender

A person’s sex is assigned at birth based on their physiological characteristics, including their genitalia and chromosome composition. Male, female, and intersex are a few recognized sexes. Gender or gender identity describe one’s innermost perception of self as a man, a woman, a variation of both, or neither, that may not always be visible to others. When sex and gender identity align, this is known as cisgender.1

Gender identity

Gender identity is best described as a spectrum rather than a binary. Terms that fall under a gender binary include man, woman, trans man, and trans woman. A nonbinary gender identity is one outside the traditional binary of men or women. Being transgender simply means having a gender identity different than the sex assigned at birth. This includes persons whose gender identities cross the gender spectrum, such as trans men or trans women, and those who fall anywhere outside or in between genders. In this way, nonbinary persons are transgender.1

 

The nonbinary spectrum

The term nonbinary encompasses many gender-nonconforming identities, such as agender, bigender, demigender, genderfluid, genderqueer, intergender, or pangender. Agender people have little connection to gender. Bigender individuals identify as 2 separate genders. Demigender persons feel a partial connection to a gender. Genderfluid individuals have a gender experience that is fluid and can change over time. Genderqueer people have a gender identity that falls in between or outside the binary. Intergender people have a gender identity between genders or identify as a combination of genders. Pangender people identify with a combination of genders. Note that patients may use some of these terms interchangeably or ascribe to them different meanings.2 As the language around gender continues to evolve, psychiatrists should ask patients from a place of nonjudgmental curiosity what gender terms they use, how they define them, and what their gender means to them.

Gender expression and transitioning

Transitioning is what a transgender person does to align their gender identity and expression.3 Gender expression is the external manifestation of gender, including names, pronouns, clothing, haircuts, behaviors, voice, body characteristics, and more.1 Transgender individuals can transition using a combination of social (name, pronouns, dress), legal (changing sex on legal documents, name change), or medical (surgeries, hormone therapies, puberty blockade) means. Transitions often help ease gender dysphoria, which is the clinically significant distress a person experiences when their sex assigned at birth does not align with their gender identity.3 Note that not all transgender persons choose to change their gender expression, and not all transgender individuals experience gender dysphoria. In this case, the proper medical term is gender incongruence, which is simply when someone’s gender identity does not align with their sex assigned at birth.4

Names and pronouns

For many transgender persons, names and pronouns are an important part of their gender transition and expression.2 Most of us have gotten into the habit of assuming pronouns because of socially established gender roles. This assumes that a person’s physical appearance matches their gender identity, which is not always the case.1 To be more affirming, psychiatrists and other health care professionals should try to break the habit of assuming pronouns. Often, an easy way to learn someone’s pronouns is to introduce yourself with yours. For example, “I am Dr. Agapoff. I use they/them/theirs pronouns. It is nice to meet you.” This creates a safe and open space for the other person to share their gender identity if they choose.

Why it’s important

One does not have to be a gender specialist to deliver gender-affirming care. As psychiatrists, having a basic understanding of the differences between sex, gender identity, and gender expression can help us build rapport and support our patients who are transgender. Based on the many kinds of gender identity and expression, judging someone’s gender based solely upon physical appearance is misguided at best and harmful at worst. Even people who are cisgender have many kinds of gender expression. For this reason, psychiatrists should approach gender with the same openness and curiosity as sexual orientation or other important considerations of emotional and physical health. Gender-informed care starts with us.

References

1. LGBTQIA Resource Center Glossary. UC Davis LGBTQIA Resource Center. Accessed July 19, 2022. https://lgbtqia.ucdavis.edu/educated/glossary

2. Richards C, Bouman WP, Seal L, et al. Non-binary or genderqueer genders. Int Rev Psychiatry. 2016;28(1):95-102. doi:10.3109/09540261.2015.1106446

3. Understanding transitions. TransFamilies.Org. Accessed June 1, 2022. https://transfamilies.org/understanding-transitions/

4. Claahsen-van der Grinten H, Verhaak C, Steensma T, et al. Gender incongruence and gender dysphoria in childhood and adolescence—current insights in diagnostics, management, and follow-up. Eur J Pediatr. 2021;180(5):1349-1357.

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Dr. Agapoff is Assistant Clinical Professor of Psychiatry, John A. Burns School of Medicine, University of Hawaii, Honolulu, Hawaii. Dr. Agapoff’s pronouns include they/them/theirs.

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Dr. Agapoff is Assistant Clinical Professor of Psychiatry, John A. Burns School of Medicine, University of Hawaii, Honolulu, Hawaii. Dr. Agapoff’s pronouns include they/them/theirs.

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Psychiatrists have a long tradition of supporting LGBTQAI+ (lesbian, gay, bisexual, transgender, queer/questioning, asexual, intersex, and others) persons. In professional and public settings, we are educators, role models, and advocates for self-expression and personal empowerment. By better educating ourselves on the topic of gender and its variations, we can become champions of gender-affirming care.

Sex vs gender

A person’s sex is assigned at birth based on their physiological characteristics, including their genitalia and chromosome composition. Male, female, and intersex are a few recognized sexes. Gender or gender identity describe one’s innermost perception of self as a man, a woman, a variation of both, or neither, that may not always be visible to others. When sex and gender identity align, this is known as cisgender.1

Gender identity

Gender identity is best described as a spectrum rather than a binary. Terms that fall under a gender binary include man, woman, trans man, and trans woman. A nonbinary gender identity is one outside the traditional binary of men or women. Being transgender simply means having a gender identity different than the sex assigned at birth. This includes persons whose gender identities cross the gender spectrum, such as trans men or trans women, and those who fall anywhere outside or in between genders. In this way, nonbinary persons are transgender.1

 

The nonbinary spectrum

The term nonbinary encompasses many gender-nonconforming identities, such as agender, bigender, demigender, genderfluid, genderqueer, intergender, or pangender. Agender people have little connection to gender. Bigender individuals identify as 2 separate genders. Demigender persons feel a partial connection to a gender. Genderfluid individuals have a gender experience that is fluid and can change over time. Genderqueer people have a gender identity that falls in between or outside the binary. Intergender people have a gender identity between genders or identify as a combination of genders. Pangender people identify with a combination of genders. Note that patients may use some of these terms interchangeably or ascribe to them different meanings.2 As the language around gender continues to evolve, psychiatrists should ask patients from a place of nonjudgmental curiosity what gender terms they use, how they define them, and what their gender means to them.

Gender expression and transitioning

Transitioning is what a transgender person does to align their gender identity and expression.3 Gender expression is the external manifestation of gender, including names, pronouns, clothing, haircuts, behaviors, voice, body characteristics, and more.1 Transgender individuals can transition using a combination of social (name, pronouns, dress), legal (changing sex on legal documents, name change), or medical (surgeries, hormone therapies, puberty blockade) means. Transitions often help ease gender dysphoria, which is the clinically significant distress a person experiences when their sex assigned at birth does not align with their gender identity.3 Note that not all transgender persons choose to change their gender expression, and not all transgender individuals experience gender dysphoria. In this case, the proper medical term is gender incongruence, which is simply when someone’s gender identity does not align with their sex assigned at birth.4

Names and pronouns

For many transgender persons, names and pronouns are an important part of their gender transition and expression.2 Most of us have gotten into the habit of assuming pronouns because of socially established gender roles. This assumes that a person’s physical appearance matches their gender identity, which is not always the case.1 To be more affirming, psychiatrists and other health care professionals should try to break the habit of assuming pronouns. Often, an easy way to learn someone’s pronouns is to introduce yourself with yours. For example, “I am Dr. Agapoff. I use they/them/theirs pronouns. It is nice to meet you.” This creates a safe and open space for the other person to share their gender identity if they choose.

Why it’s important

One does not have to be a gender specialist to deliver gender-affirming care. As psychiatrists, having a basic understanding of the differences between sex, gender identity, and gender expression can help us build rapport and support our patients who are transgender. Based on the many kinds of gender identity and expression, judging someone’s gender based solely upon physical appearance is misguided at best and harmful at worst. Even people who are cisgender have many kinds of gender expression. For this reason, psychiatrists should approach gender with the same openness and curiosity as sexual orientation or other important considerations of emotional and physical health. Gender-informed care starts with us.

Psychiatrists have a long tradition of supporting LGBTQAI+ (lesbian, gay, bisexual, transgender, queer/questioning, asexual, intersex, and others) persons. In professional and public settings, we are educators, role models, and advocates for self-expression and personal empowerment. By better educating ourselves on the topic of gender and its variations, we can become champions of gender-affirming care.

Sex vs gender

A person’s sex is assigned at birth based on their physiological characteristics, including their genitalia and chromosome composition. Male, female, and intersex are a few recognized sexes. Gender or gender identity describe one’s innermost perception of self as a man, a woman, a variation of both, or neither, that may not always be visible to others. When sex and gender identity align, this is known as cisgender.1

Gender identity

Gender identity is best described as a spectrum rather than a binary. Terms that fall under a gender binary include man, woman, trans man, and trans woman. A nonbinary gender identity is one outside the traditional binary of men or women. Being transgender simply means having a gender identity different than the sex assigned at birth. This includes persons whose gender identities cross the gender spectrum, such as trans men or trans women, and those who fall anywhere outside or in between genders. In this way, nonbinary persons are transgender.1

 

The nonbinary spectrum

The term nonbinary encompasses many gender-nonconforming identities, such as agender, bigender, demigender, genderfluid, genderqueer, intergender, or pangender. Agender people have little connection to gender. Bigender individuals identify as 2 separate genders. Demigender persons feel a partial connection to a gender. Genderfluid individuals have a gender experience that is fluid and can change over time. Genderqueer people have a gender identity that falls in between or outside the binary. Intergender people have a gender identity between genders or identify as a combination of genders. Pangender people identify with a combination of genders. Note that patients may use some of these terms interchangeably or ascribe to them different meanings.2 As the language around gender continues to evolve, psychiatrists should ask patients from a place of nonjudgmental curiosity what gender terms they use, how they define them, and what their gender means to them.

Gender expression and transitioning

Transitioning is what a transgender person does to align their gender identity and expression.3 Gender expression is the external manifestation of gender, including names, pronouns, clothing, haircuts, behaviors, voice, body characteristics, and more.1 Transgender individuals can transition using a combination of social (name, pronouns, dress), legal (changing sex on legal documents, name change), or medical (surgeries, hormone therapies, puberty blockade) means. Transitions often help ease gender dysphoria, which is the clinically significant distress a person experiences when their sex assigned at birth does not align with their gender identity.3 Note that not all transgender persons choose to change their gender expression, and not all transgender individuals experience gender dysphoria. In this case, the proper medical term is gender incongruence, which is simply when someone’s gender identity does not align with their sex assigned at birth.4

Names and pronouns

For many transgender persons, names and pronouns are an important part of their gender transition and expression.2 Most of us have gotten into the habit of assuming pronouns because of socially established gender roles. This assumes that a person’s physical appearance matches their gender identity, which is not always the case.1 To be more affirming, psychiatrists and other health care professionals should try to break the habit of assuming pronouns. Often, an easy way to learn someone’s pronouns is to introduce yourself with yours. For example, “I am Dr. Agapoff. I use they/them/theirs pronouns. It is nice to meet you.” This creates a safe and open space for the other person to share their gender identity if they choose.

Why it’s important

One does not have to be a gender specialist to deliver gender-affirming care. As psychiatrists, having a basic understanding of the differences between sex, gender identity, and gender expression can help us build rapport and support our patients who are transgender. Based on the many kinds of gender identity and expression, judging someone’s gender based solely upon physical appearance is misguided at best and harmful at worst. Even people who are cisgender have many kinds of gender expression. For this reason, psychiatrists should approach gender with the same openness and curiosity as sexual orientation or other important considerations of emotional and physical health. Gender-informed care starts with us.

References

1. LGBTQIA Resource Center Glossary. UC Davis LGBTQIA Resource Center. Accessed July 19, 2022. https://lgbtqia.ucdavis.edu/educated/glossary

2. Richards C, Bouman WP, Seal L, et al. Non-binary or genderqueer genders. Int Rev Psychiatry. 2016;28(1):95-102. doi:10.3109/09540261.2015.1106446

3. Understanding transitions. TransFamilies.Org. Accessed June 1, 2022. https://transfamilies.org/understanding-transitions/

4. Claahsen-van der Grinten H, Verhaak C, Steensma T, et al. Gender incongruence and gender dysphoria in childhood and adolescence—current insights in diagnostics, management, and follow-up. Eur J Pediatr. 2021;180(5):1349-1357.

References

1. LGBTQIA Resource Center Glossary. UC Davis LGBTQIA Resource Center. Accessed July 19, 2022. https://lgbtqia.ucdavis.edu/educated/glossary

2. Richards C, Bouman WP, Seal L, et al. Non-binary or genderqueer genders. Int Rev Psychiatry. 2016;28(1):95-102. doi:10.3109/09540261.2015.1106446

3. Understanding transitions. TransFamilies.Org. Accessed June 1, 2022. https://transfamilies.org/understanding-transitions/

4. Claahsen-van der Grinten H, Verhaak C, Steensma T, et al. Gender incongruence and gender dysphoria in childhood and adolescence—current insights in diagnostics, management, and follow-up. Eur J Pediatr. 2021;180(5):1349-1357.

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Blind to Problems: How VA’s Electronic Record System Shuts Out Visually Impaired Patients

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Sarah Sheffield, a nurse practitioner at a Veterans Affairs clinic in Eugene, Oregon, had a problem. Her patients — mostly in their 70s and beyond — couldn’t read computer screens. It’s not an unusual problem for older people, which is why you might think Oracle Cerner, the developers of the agency’s new digital health record system, would have anticipated it.

But they didn’t.

Federal law requires government resources to be accessible to patients with disabilities. But patients can’t easily enlarge the text. “They all learned to get strong reading glasses and magnifying glasses,” said Sheffield, who retired in early October.

The difficulties are everyday reminders of a dire reality for patients in the VA system. More than a million patients are blind or have low vision. They rely on software to access prescriptions or send messages to their doctors. But often the technology fails them. Either the screens don’t allow users to zoom in on the text, or screen-reader software that translates text to speech isn’t compatible.

“None of the systems are accessible” to these patients, said Donald Overton, executive director of the Blinded Veterans Association.

Patients often struggle even to log into websites or enter basic information needed to check in for hospital visits, Overton said: “We find our community stops trying, checks out, and disengages. They become dependent on other individuals; they give up independence.”

Now, the developing VA medical record system, already bloated by outsize costs, has been delayed until June 2023. So far, the project has threatened to exacerbate those issues.

While users in general have been affected by numerous incidents of downtime, delayed care, and missing information, barriers to access are particularly acute for blind and low-vision users — whether patients or workers within the health system. At least one Oregon-based employee has been offered aid — a helper assigned to read and click buttons — to navigate the system.

Over 1,000 Section 508 complaints are in a backlog to be assessed, or assigned to Oracle Cerner to fix, Veterans Affairs spokesperson Terrence Hayes confirmed. That section is part of federal law guaranteeing people with disabilities access to government technology.

Hayes said the problems described by these complaints don’t prevent employees and patients with disabilities from using the system. The complaints — 469 of which have been assigned to Oracle Cerner to fix, he said — mean that users’ disabilities make it more difficult, to the point of requiring mitigation.

The project is under new management with big promises. North Kansas City, Missouri-based developer Cerner, which originally landed the VA contract, was recently taken over by database technology giant Oracle, which plans to overhaul the software, company executive Mike Sicilia said during a September Senate hearing. “We intend to rewrite” the system, he said. “We have found nothing that can’t be addressed in relatively short order.”

But that will happen under continued scrutiny. Rep. Mark Takano (D-Calif.), chair of the House Veterans Affairs Committee, said his panel would continue to oversee the department’s compliance with accessibility standards. “Whether they work for VA or receive health care and benefits, the needs of veterans must be addressed by companies that want to work with the VA,” he said.

Takano, along with fellow Democrats Sens. Bob Casey of Pennsylvania and Jon Tester of Montana, sent a letter Oct. 7 to VA Secretary Denis McDonough noting the significant gaps in the agency’s systems, and urging VA to engage with all disabled veterans, not merely those who are blind.

VA was alerted early and often that Cerner’s software posed problems for blind- and low-vision users, interviews and a review of records show. As early as 2015, when the Department of Defense and VA were exploring purchasing new systems, the National Federation of the Blind submitted letters to both departments, and Cerner, expressing concerns that the product would be unusable for clinicians and patients.

Alerts also came from inside VA. “We pointed out to Cerner that their system was really dependent on vision and that it was a major problem. The icons are really, really small,” said Dr. Art Wallace, a VA anesthesiologist who participated in one of the agency’s user groups to provide input for the eventual design of the system.

The Cerner system, he told the agency and KHN, is user-unfriendly. On the clinician side, it requires multiple high-resolution monitors to display a patient’s entire record, and VA facilities don’t always enjoy that wealth of equipment. “It would be very hard for visually impaired people, or normal people wearing bifocals, to use,” he concluded.

Before the software was rolled out, the system also failed a test with an employee working with a team at Oregon’s White City VA Medical Center devoted to helping blind patients develop skills and independence, said Carolyn Schwab, president of the American Federation of Government Employees Local 1042.

In the testing, the system didn’t work with adaptive equipment, like text-to-speech software, she said. Despite receiving these complaints about the system, VA and Cerner “implemented it anyway.” Recently, when a regional AFGE president asked VA why they used the software — despite the federal mandates — he received no response, Schwab said.

Some within the company also thought there would be struggles. Two former Cerner employees said the standard medical record system was getting long in the tooth when VA signed an agreement to purchase and customize the product.

Because it was built on old code, the software was difficult to patch when problems were discovered, the employees said. What’s more, according to the employees, Cerner took a doggedly incremental approach to fixing errors. If someone complained about a malfunctioning button on a page filled with other potholes, the company would fix just that button — not the whole page, the employees said.

VA spokesperson Hayes denied the claims, saying the developer and department try to address problems holistically. Cerner did not respond to multiple requests for comment.

Accessibility errors are as present in private sector medical record systems as public. Cerner patched up a bug with the Safari web browser’s rendering of its patient portal when the Massachusetts Institute of Technology’s student clinic threatened legal action, the former employees said. (“MIT Medical does not, as a general practice, discuss individual vendor contracts or services,” said spokesperson David Tytell.)

Legal threats — with hospital systems and medical record systems routinely facing lawsuits — are the most obvious symptom of a lack of accessibility within the U.S. health care system.

Deep inaccessibility plagues the burgeoning telehealth sector. A recent survey from the American Federation for the Blind found that 57% of respondents struggled to use providers’ proprietary telehealth platforms. Some resorted to FaceTime. Many said they were unable to log in or couldn’t read information transmitted through chat sidebars.

Existing federal regulations could, in theory, be used to enforce higher standards of accessibility in health technology. The Department of Health and Human Services Office for Civil Rights issued guidance during the pandemic on making telehealth technologies easier to use for patients with disabilities. And other agencies could start leaning on hospitals, because they are recipients of government dollars or federal vendors, to make sure their offerings work for such patients.

That might not happen. These regulations could prove toothless, advocates warn. While there are several laws on the books, the advocates argue that enforcement and tougher regulations have not been forthcoming. “The concern from stakeholders is: Are you going to slow-walk this again?” said Joe Nahra, director of government relations at Powers Law, a Washington, D.C., law firm.

Building in accessibility has historically benefited all users. Voice assistance technology was originally developed to help blind- and low-vision users before winning widespread popularity with gadgets like Siri and Alexa.

Disability advocates believe vendors often push technology ahead without properly considering the impact on the people who will rely on it. “In the rush to be the first one, they put accessibility on the back burner,” said Eve Hill, a disability rights attorney with Brown, Goldstein & Levy, a civil rights law firm.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Sarah Sheffield, a nurse practitioner at a Veterans Affairs clinic in Eugene, Oregon, had a problem. Her patients — mostly in their 70s and beyond — couldn’t read computer screens. It’s not an unusual problem for older people, which is why you might think Oracle Cerner, the developers of the agency’s new digital health record system, would have anticipated it.

But they didn’t.

Federal law requires government resources to be accessible to patients with disabilities. But patients can’t easily enlarge the text. “They all learned to get strong reading glasses and magnifying glasses,” said Sheffield, who retired in early October.

The difficulties are everyday reminders of a dire reality for patients in the VA system. More than a million patients are blind or have low vision. They rely on software to access prescriptions or send messages to their doctors. But often the technology fails them. Either the screens don’t allow users to zoom in on the text, or screen-reader software that translates text to speech isn’t compatible.

“None of the systems are accessible” to these patients, said Donald Overton, executive director of the Blinded Veterans Association.

Patients often struggle even to log into websites or enter basic information needed to check in for hospital visits, Overton said: “We find our community stops trying, checks out, and disengages. They become dependent on other individuals; they give up independence.”

Now, the developing VA medical record system, already bloated by outsize costs, has been delayed until June 2023. So far, the project has threatened to exacerbate those issues.

While users in general have been affected by numerous incidents of downtime, delayed care, and missing information, barriers to access are particularly acute for blind and low-vision users — whether patients or workers within the health system. At least one Oregon-based employee has been offered aid — a helper assigned to read and click buttons — to navigate the system.

Over 1,000 Section 508 complaints are in a backlog to be assessed, or assigned to Oracle Cerner to fix, Veterans Affairs spokesperson Terrence Hayes confirmed. That section is part of federal law guaranteeing people with disabilities access to government technology.

Hayes said the problems described by these complaints don’t prevent employees and patients with disabilities from using the system. The complaints — 469 of which have been assigned to Oracle Cerner to fix, he said — mean that users’ disabilities make it more difficult, to the point of requiring mitigation.

The project is under new management with big promises. North Kansas City, Missouri-based developer Cerner, which originally landed the VA contract, was recently taken over by database technology giant Oracle, which plans to overhaul the software, company executive Mike Sicilia said during a September Senate hearing. “We intend to rewrite” the system, he said. “We have found nothing that can’t be addressed in relatively short order.”

But that will happen under continued scrutiny. Rep. Mark Takano (D-Calif.), chair of the House Veterans Affairs Committee, said his panel would continue to oversee the department’s compliance with accessibility standards. “Whether they work for VA or receive health care and benefits, the needs of veterans must be addressed by companies that want to work with the VA,” he said.

Takano, along with fellow Democrats Sens. Bob Casey of Pennsylvania and Jon Tester of Montana, sent a letter Oct. 7 to VA Secretary Denis McDonough noting the significant gaps in the agency’s systems, and urging VA to engage with all disabled veterans, not merely those who are blind.

VA was alerted early and often that Cerner’s software posed problems for blind- and low-vision users, interviews and a review of records show. As early as 2015, when the Department of Defense and VA were exploring purchasing new systems, the National Federation of the Blind submitted letters to both departments, and Cerner, expressing concerns that the product would be unusable for clinicians and patients.

Alerts also came from inside VA. “We pointed out to Cerner that their system was really dependent on vision and that it was a major problem. The icons are really, really small,” said Dr. Art Wallace, a VA anesthesiologist who participated in one of the agency’s user groups to provide input for the eventual design of the system.

The Cerner system, he told the agency and KHN, is user-unfriendly. On the clinician side, it requires multiple high-resolution monitors to display a patient’s entire record, and VA facilities don’t always enjoy that wealth of equipment. “It would be very hard for visually impaired people, or normal people wearing bifocals, to use,” he concluded.

Before the software was rolled out, the system also failed a test with an employee working with a team at Oregon’s White City VA Medical Center devoted to helping blind patients develop skills and independence, said Carolyn Schwab, president of the American Federation of Government Employees Local 1042.

In the testing, the system didn’t work with adaptive equipment, like text-to-speech software, she said. Despite receiving these complaints about the system, VA and Cerner “implemented it anyway.” Recently, when a regional AFGE president asked VA why they used the software — despite the federal mandates — he received no response, Schwab said.

Some within the company also thought there would be struggles. Two former Cerner employees said the standard medical record system was getting long in the tooth when VA signed an agreement to purchase and customize the product.

Because it was built on old code, the software was difficult to patch when problems were discovered, the employees said. What’s more, according to the employees, Cerner took a doggedly incremental approach to fixing errors. If someone complained about a malfunctioning button on a page filled with other potholes, the company would fix just that button — not the whole page, the employees said.

VA spokesperson Hayes denied the claims, saying the developer and department try to address problems holistically. Cerner did not respond to multiple requests for comment.

Accessibility errors are as present in private sector medical record systems as public. Cerner patched up a bug with the Safari web browser’s rendering of its patient portal when the Massachusetts Institute of Technology’s student clinic threatened legal action, the former employees said. (“MIT Medical does not, as a general practice, discuss individual vendor contracts or services,” said spokesperson David Tytell.)

Legal threats — with hospital systems and medical record systems routinely facing lawsuits — are the most obvious symptom of a lack of accessibility within the U.S. health care system.

Deep inaccessibility plagues the burgeoning telehealth sector. A recent survey from the American Federation for the Blind found that 57% of respondents struggled to use providers’ proprietary telehealth platforms. Some resorted to FaceTime. Many said they were unable to log in or couldn’t read information transmitted through chat sidebars.

Existing federal regulations could, in theory, be used to enforce higher standards of accessibility in health technology. The Department of Health and Human Services Office for Civil Rights issued guidance during the pandemic on making telehealth technologies easier to use for patients with disabilities. And other agencies could start leaning on hospitals, because they are recipients of government dollars or federal vendors, to make sure their offerings work for such patients.

That might not happen. These regulations could prove toothless, advocates warn. While there are several laws on the books, the advocates argue that enforcement and tougher regulations have not been forthcoming. “The concern from stakeholders is: Are you going to slow-walk this again?” said Joe Nahra, director of government relations at Powers Law, a Washington, D.C., law firm.

Building in accessibility has historically benefited all users. Voice assistance technology was originally developed to help blind- and low-vision users before winning widespread popularity with gadgets like Siri and Alexa.

Disability advocates believe vendors often push technology ahead without properly considering the impact on the people who will rely on it. “In the rush to be the first one, they put accessibility on the back burner,” said Eve Hill, a disability rights attorney with Brown, Goldstein & Levy, a civil rights law firm.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Sarah Sheffield, a nurse practitioner at a Veterans Affairs clinic in Eugene, Oregon, had a problem. Her patients — mostly in their 70s and beyond — couldn’t read computer screens. It’s not an unusual problem for older people, which is why you might think Oracle Cerner, the developers of the agency’s new digital health record system, would have anticipated it.

But they didn’t.

Federal law requires government resources to be accessible to patients with disabilities. But patients can’t easily enlarge the text. “They all learned to get strong reading glasses and magnifying glasses,” said Sheffield, who retired in early October.

The difficulties are everyday reminders of a dire reality for patients in the VA system. More than a million patients are blind or have low vision. They rely on software to access prescriptions or send messages to their doctors. But often the technology fails them. Either the screens don’t allow users to zoom in on the text, or screen-reader software that translates text to speech isn’t compatible.

“None of the systems are accessible” to these patients, said Donald Overton, executive director of the Blinded Veterans Association.

Patients often struggle even to log into websites or enter basic information needed to check in for hospital visits, Overton said: “We find our community stops trying, checks out, and disengages. They become dependent on other individuals; they give up independence.”

Now, the developing VA medical record system, already bloated by outsize costs, has been delayed until June 2023. So far, the project has threatened to exacerbate those issues.

While users in general have been affected by numerous incidents of downtime, delayed care, and missing information, barriers to access are particularly acute for blind and low-vision users — whether patients or workers within the health system. At least one Oregon-based employee has been offered aid — a helper assigned to read and click buttons — to navigate the system.

Over 1,000 Section 508 complaints are in a backlog to be assessed, or assigned to Oracle Cerner to fix, Veterans Affairs spokesperson Terrence Hayes confirmed. That section is part of federal law guaranteeing people with disabilities access to government technology.

Hayes said the problems described by these complaints don’t prevent employees and patients with disabilities from using the system. The complaints — 469 of which have been assigned to Oracle Cerner to fix, he said — mean that users’ disabilities make it more difficult, to the point of requiring mitigation.

The project is under new management with big promises. North Kansas City, Missouri-based developer Cerner, which originally landed the VA contract, was recently taken over by database technology giant Oracle, which plans to overhaul the software, company executive Mike Sicilia said during a September Senate hearing. “We intend to rewrite” the system, he said. “We have found nothing that can’t be addressed in relatively short order.”

But that will happen under continued scrutiny. Rep. Mark Takano (D-Calif.), chair of the House Veterans Affairs Committee, said his panel would continue to oversee the department’s compliance with accessibility standards. “Whether they work for VA or receive health care and benefits, the needs of veterans must be addressed by companies that want to work with the VA,” he said.

Takano, along with fellow Democrats Sens. Bob Casey of Pennsylvania and Jon Tester of Montana, sent a letter Oct. 7 to VA Secretary Denis McDonough noting the significant gaps in the agency’s systems, and urging VA to engage with all disabled veterans, not merely those who are blind.

VA was alerted early and often that Cerner’s software posed problems for blind- and low-vision users, interviews and a review of records show. As early as 2015, when the Department of Defense and VA were exploring purchasing new systems, the National Federation of the Blind submitted letters to both departments, and Cerner, expressing concerns that the product would be unusable for clinicians and patients.

Alerts also came from inside VA. “We pointed out to Cerner that their system was really dependent on vision and that it was a major problem. The icons are really, really small,” said Dr. Art Wallace, a VA anesthesiologist who participated in one of the agency’s user groups to provide input for the eventual design of the system.

The Cerner system, he told the agency and KHN, is user-unfriendly. On the clinician side, it requires multiple high-resolution monitors to display a patient’s entire record, and VA facilities don’t always enjoy that wealth of equipment. “It would be very hard for visually impaired people, or normal people wearing bifocals, to use,” he concluded.

Before the software was rolled out, the system also failed a test with an employee working with a team at Oregon’s White City VA Medical Center devoted to helping blind patients develop skills and independence, said Carolyn Schwab, president of the American Federation of Government Employees Local 1042.

In the testing, the system didn’t work with adaptive equipment, like text-to-speech software, she said. Despite receiving these complaints about the system, VA and Cerner “implemented it anyway.” Recently, when a regional AFGE president asked VA why they used the software — despite the federal mandates — he received no response, Schwab said.

Some within the company also thought there would be struggles. Two former Cerner employees said the standard medical record system was getting long in the tooth when VA signed an agreement to purchase and customize the product.

Because it was built on old code, the software was difficult to patch when problems were discovered, the employees said. What’s more, according to the employees, Cerner took a doggedly incremental approach to fixing errors. If someone complained about a malfunctioning button on a page filled with other potholes, the company would fix just that button — not the whole page, the employees said.

VA spokesperson Hayes denied the claims, saying the developer and department try to address problems holistically. Cerner did not respond to multiple requests for comment.

Accessibility errors are as present in private sector medical record systems as public. Cerner patched up a bug with the Safari web browser’s rendering of its patient portal when the Massachusetts Institute of Technology’s student clinic threatened legal action, the former employees said. (“MIT Medical does not, as a general practice, discuss individual vendor contracts or services,” said spokesperson David Tytell.)

Legal threats — with hospital systems and medical record systems routinely facing lawsuits — are the most obvious symptom of a lack of accessibility within the U.S. health care system.

Deep inaccessibility plagues the burgeoning telehealth sector. A recent survey from the American Federation for the Blind found that 57% of respondents struggled to use providers’ proprietary telehealth platforms. Some resorted to FaceTime. Many said they were unable to log in or couldn’t read information transmitted through chat sidebars.

Existing federal regulations could, in theory, be used to enforce higher standards of accessibility in health technology. The Department of Health and Human Services Office for Civil Rights issued guidance during the pandemic on making telehealth technologies easier to use for patients with disabilities. And other agencies could start leaning on hospitals, because they are recipients of government dollars or federal vendors, to make sure their offerings work for such patients.

That might not happen. These regulations could prove toothless, advocates warn. While there are several laws on the books, the advocates argue that enforcement and tougher regulations have not been forthcoming. “The concern from stakeholders is: Are you going to slow-walk this again?” said Joe Nahra, director of government relations at Powers Law, a Washington, D.C., law firm.

Building in accessibility has historically benefited all users. Voice assistance technology was originally developed to help blind- and low-vision users before winning widespread popularity with gadgets like Siri and Alexa.

Disability advocates believe vendors often push technology ahead without properly considering the impact on the people who will rely on it. “In the rush to be the first one, they put accessibility on the back burner,” said Eve Hill, a disability rights attorney with Brown, Goldstein & Levy, a civil rights law firm.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Blind to Problems: How VA’s Electronic Record System Shuts Out Visually Impaired Patients
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Burden of pregnancy-related conditions and severe cardiovascular outcomes: What is the link?

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Key clinical point: Pregnancy-related cardiometabolic condition of any type was associated with almost a 3-fold higher risk for severe cardiovascular outcomes in the perinatal and postnatal periods, with preeclampsia being associated with a 7-fold higher risk for severe cardiovascular outcomes.

 

Major finding: Risk for severe cardiovascular outcomes was higher in women with vs without pregnancy-related cardiometabolic conditions (adjusted odds ratio [aOR] 3.1; 95% CI 2.7-3.5), with the risk being most prominent for severe preeclampsia (aOR 7.0; 95% CI 5.7-8.6).

 

Study details: This was a post hoc analysis of the deidentified administrative data of 74,510 women who had at least one delivery during the observation period.

 

Disclosures: This study did not declare any specific source of funding. The authors did not declare any conflicts of interest.

 

Source: Marschner S et al. Pregnancy-related cardiovascular conditions and outcomes in a United States Medicaid population. Heart. 2022;108(19):1524-1529 (Sep 12). Doi: 10.1136/heartjnl-2021-320684

 

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Key clinical point: Pregnancy-related cardiometabolic condition of any type was associated with almost a 3-fold higher risk for severe cardiovascular outcomes in the perinatal and postnatal periods, with preeclampsia being associated with a 7-fold higher risk for severe cardiovascular outcomes.

 

Major finding: Risk for severe cardiovascular outcomes was higher in women with vs without pregnancy-related cardiometabolic conditions (adjusted odds ratio [aOR] 3.1; 95% CI 2.7-3.5), with the risk being most prominent for severe preeclampsia (aOR 7.0; 95% CI 5.7-8.6).

 

Study details: This was a post hoc analysis of the deidentified administrative data of 74,510 women who had at least one delivery during the observation period.

 

Disclosures: This study did not declare any specific source of funding. The authors did not declare any conflicts of interest.

 

Source: Marschner S et al. Pregnancy-related cardiovascular conditions and outcomes in a United States Medicaid population. Heart. 2022;108(19):1524-1529 (Sep 12). Doi: 10.1136/heartjnl-2021-320684

 

Key clinical point: Pregnancy-related cardiometabolic condition of any type was associated with almost a 3-fold higher risk for severe cardiovascular outcomes in the perinatal and postnatal periods, with preeclampsia being associated with a 7-fold higher risk for severe cardiovascular outcomes.

 

Major finding: Risk for severe cardiovascular outcomes was higher in women with vs without pregnancy-related cardiometabolic conditions (adjusted odds ratio [aOR] 3.1; 95% CI 2.7-3.5), with the risk being most prominent for severe preeclampsia (aOR 7.0; 95% CI 5.7-8.6).

 

Study details: This was a post hoc analysis of the deidentified administrative data of 74,510 women who had at least one delivery during the observation period.

 

Disclosures: This study did not declare any specific source of funding. The authors did not declare any conflicts of interest.

 

Source: Marschner S et al. Pregnancy-related cardiovascular conditions and outcomes in a United States Medicaid population. Heart. 2022;108(19):1524-1529 (Sep 12). Doi: 10.1136/heartjnl-2021-320684

 

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Maternal serum sST2 and NT-proBNP levels associated with preeclampsia occurrence in twin pregnancies

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Key clinical point: A significant and independent association was observed between the serum soluble suppression of tumorigenicity 2 (sST2) and N-terminal probrain natriuretic peptide (NT-proBNP) levels during the second or early-third trimester and the onset of preeclampsia in women with twin pregnancies.

 

Major finding: Twin pregnancies with vs without preeclampsia were associated with significantly higher maternal serum levels of sST2 and NT-proBNP in the second and early-third trimesters (both P < .001), with a serum sST2 level of ≥30.7 ng/mL (odds ratio [OR] 8.13; P < .001) and NT-proBNP level of ≥282.2 pg/mL (OR 7.20; P < .001) being independently associated with the occurrence of preeclampsia in twin pregnancies.

 

Study details: Findings are from a longitudinal nested case-control study that included women with dichorionic twin pregnancies from a prospective cohort and compared women with (n = 78) and without (n = 78) preeclampsia.

 

Disclosures: This study was funded by the National Natural Science Foundation of China. The authors declared no conflicts of interest.

 

Source: Xiang Q et al. The correlation between maternal serum sST2, IL-33 and NT-proBNP concentrations and occurrence of pre-eclampsia in twin pregnancies: A longitudinal study. J Clin Hypertens (Greenwich). 2022 (Sep 23). Doi: 10.1111/jch.14579

 

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Key clinical point: A significant and independent association was observed between the serum soluble suppression of tumorigenicity 2 (sST2) and N-terminal probrain natriuretic peptide (NT-proBNP) levels during the second or early-third trimester and the onset of preeclampsia in women with twin pregnancies.

 

Major finding: Twin pregnancies with vs without preeclampsia were associated with significantly higher maternal serum levels of sST2 and NT-proBNP in the second and early-third trimesters (both P < .001), with a serum sST2 level of ≥30.7 ng/mL (odds ratio [OR] 8.13; P < .001) and NT-proBNP level of ≥282.2 pg/mL (OR 7.20; P < .001) being independently associated with the occurrence of preeclampsia in twin pregnancies.

 

Study details: Findings are from a longitudinal nested case-control study that included women with dichorionic twin pregnancies from a prospective cohort and compared women with (n = 78) and without (n = 78) preeclampsia.

 

Disclosures: This study was funded by the National Natural Science Foundation of China. The authors declared no conflicts of interest.

 

Source: Xiang Q et al. The correlation between maternal serum sST2, IL-33 and NT-proBNP concentrations and occurrence of pre-eclampsia in twin pregnancies: A longitudinal study. J Clin Hypertens (Greenwich). 2022 (Sep 23). Doi: 10.1111/jch.14579

 

Key clinical point: A significant and independent association was observed between the serum soluble suppression of tumorigenicity 2 (sST2) and N-terminal probrain natriuretic peptide (NT-proBNP) levels during the second or early-third trimester and the onset of preeclampsia in women with twin pregnancies.

 

Major finding: Twin pregnancies with vs without preeclampsia were associated with significantly higher maternal serum levels of sST2 and NT-proBNP in the second and early-third trimesters (both P < .001), with a serum sST2 level of ≥30.7 ng/mL (odds ratio [OR] 8.13; P < .001) and NT-proBNP level of ≥282.2 pg/mL (OR 7.20; P < .001) being independently associated with the occurrence of preeclampsia in twin pregnancies.

 

Study details: Findings are from a longitudinal nested case-control study that included women with dichorionic twin pregnancies from a prospective cohort and compared women with (n = 78) and without (n = 78) preeclampsia.

 

Disclosures: This study was funded by the National Natural Science Foundation of China. The authors declared no conflicts of interest.

 

Source: Xiang Q et al. The correlation between maternal serum sST2, IL-33 and NT-proBNP concentrations and occurrence of pre-eclampsia in twin pregnancies: A longitudinal study. J Clin Hypertens (Greenwich). 2022 (Sep 23). Doi: 10.1111/jch.14579

 

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No neonatal hypothyroidism risk in newborns from mothers investigated for suspected PE using CTPA

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Key clinical point: Exposure to computed tomography pulmonary angiography (CTPA) in pregnant women with clinically suspected pulmonary embolism (PE) did not lead to neonatal hypothyroidism among newborns.

 

Major finding: In newborns from pregnant women with suspected PE who underwent CTPA, all reported Guthrie levels were below 15 U/mL, with no newborns with neonatal hypothyroidism (0.0%, 95% CI 0.0%-2.5%).

 

Study details: The data come from a prospective management outcome study that evaluated 149 pregnant women (including 14 with twin pregnancies) with suspected PE who underwent CTPA.

 

Disclosures: This study was supported by grants from the Swiss National Foundation for scientific research, Groupe d'Etude de la Thrombose de Bretagne Occidentale, and International Society on Thrombosis and Haemostasis Presidential Grant. The authors declared no conflicts of interest.

 

Source: Righini M et al for the CT-PE-Pregnancy group. Risk of neonatal hypothyroidism in newborns from mothers exposed to CTPA during pregnancy: Ancillary data from a prospective outcome study. J Thromb Haemost. 2022 (Aug 11). Doi: 10.1111/jth.15843

 

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Key clinical point: Exposure to computed tomography pulmonary angiography (CTPA) in pregnant women with clinically suspected pulmonary embolism (PE) did not lead to neonatal hypothyroidism among newborns.

 

Major finding: In newborns from pregnant women with suspected PE who underwent CTPA, all reported Guthrie levels were below 15 U/mL, with no newborns with neonatal hypothyroidism (0.0%, 95% CI 0.0%-2.5%).

 

Study details: The data come from a prospective management outcome study that evaluated 149 pregnant women (including 14 with twin pregnancies) with suspected PE who underwent CTPA.

 

Disclosures: This study was supported by grants from the Swiss National Foundation for scientific research, Groupe d'Etude de la Thrombose de Bretagne Occidentale, and International Society on Thrombosis and Haemostasis Presidential Grant. The authors declared no conflicts of interest.

 

Source: Righini M et al for the CT-PE-Pregnancy group. Risk of neonatal hypothyroidism in newborns from mothers exposed to CTPA during pregnancy: Ancillary data from a prospective outcome study. J Thromb Haemost. 2022 (Aug 11). Doi: 10.1111/jth.15843

 

Key clinical point: Exposure to computed tomography pulmonary angiography (CTPA) in pregnant women with clinically suspected pulmonary embolism (PE) did not lead to neonatal hypothyroidism among newborns.

 

Major finding: In newborns from pregnant women with suspected PE who underwent CTPA, all reported Guthrie levels were below 15 U/mL, with no newborns with neonatal hypothyroidism (0.0%, 95% CI 0.0%-2.5%).

 

Study details: The data come from a prospective management outcome study that evaluated 149 pregnant women (including 14 with twin pregnancies) with suspected PE who underwent CTPA.

 

Disclosures: This study was supported by grants from the Swiss National Foundation for scientific research, Groupe d'Etude de la Thrombose de Bretagne Occidentale, and International Society on Thrombosis and Haemostasis Presidential Grant. The authors declared no conflicts of interest.

 

Source: Righini M et al for the CT-PE-Pregnancy group. Risk of neonatal hypothyroidism in newborns from mothers exposed to CTPA during pregnancy: Ancillary data from a prospective outcome study. J Thromb Haemost. 2022 (Aug 11). Doi: 10.1111/jth.15843

 

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Postpartum hemorrhage: Most common maternal morbidity after MTOP at ≥20 weeks’ gestation

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Key clinical point: Majority of women undergoing medical termination of pregnancy (MTOP) for fetal anomaly at 20 weeks’ gestation had successful unassisted deliveries, but a quarter had common or severe morbidities, with the most common morbidities being postpartum hemorrhage and manual removal of retained placental tissue.

 

Major finding: Overall, 99.0% of women undergoing MTOP for fetal anomaly at ≥20 weeks' gestation had spontaneous vaginal deliveries and 25.5% had a common or severe morbidity, with the most common maternal morbidities being manual removal of retained placental tissue (16.0%) and postpartum hemorrhage (11.1%). Severe maternal morbidity occurred in 1.3% of cases and included amniotic fluid embolism. No maternal deaths were reported.

 

Study details: Findings are from a 10-year retrospective cohort study including 407 women with singleton pregnancies undergoing MTOP for fetal structure or chromosomal anomaly at ≥20 weeks' gestation.

 

Disclosures: This study did not report the source of funding. The authors declared no conflicts of interest.

 

Source: Stewart B et al. Medical termination of pregnancy for fetal anomaly at or beyond 20 weeks' gestation-What are the maternal risks? Prenat Diagn. 2022 (Sep 25). Doi: 10.1002/pd.6241

 

 

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Key clinical point: Majority of women undergoing medical termination of pregnancy (MTOP) for fetal anomaly at 20 weeks’ gestation had successful unassisted deliveries, but a quarter had common or severe morbidities, with the most common morbidities being postpartum hemorrhage and manual removal of retained placental tissue.

 

Major finding: Overall, 99.0% of women undergoing MTOP for fetal anomaly at ≥20 weeks' gestation had spontaneous vaginal deliveries and 25.5% had a common or severe morbidity, with the most common maternal morbidities being manual removal of retained placental tissue (16.0%) and postpartum hemorrhage (11.1%). Severe maternal morbidity occurred in 1.3% of cases and included amniotic fluid embolism. No maternal deaths were reported.

 

Study details: Findings are from a 10-year retrospective cohort study including 407 women with singleton pregnancies undergoing MTOP for fetal structure or chromosomal anomaly at ≥20 weeks' gestation.

 

Disclosures: This study did not report the source of funding. The authors declared no conflicts of interest.

 

Source: Stewart B et al. Medical termination of pregnancy for fetal anomaly at or beyond 20 weeks' gestation-What are the maternal risks? Prenat Diagn. 2022 (Sep 25). Doi: 10.1002/pd.6241

 

 

Key clinical point: Majority of women undergoing medical termination of pregnancy (MTOP) for fetal anomaly at 20 weeks’ gestation had successful unassisted deliveries, but a quarter had common or severe morbidities, with the most common morbidities being postpartum hemorrhage and manual removal of retained placental tissue.

 

Major finding: Overall, 99.0% of women undergoing MTOP for fetal anomaly at ≥20 weeks' gestation had spontaneous vaginal deliveries and 25.5% had a common or severe morbidity, with the most common maternal morbidities being manual removal of retained placental tissue (16.0%) and postpartum hemorrhage (11.1%). Severe maternal morbidity occurred in 1.3% of cases and included amniotic fluid embolism. No maternal deaths were reported.

 

Study details: Findings are from a 10-year retrospective cohort study including 407 women with singleton pregnancies undergoing MTOP for fetal structure or chromosomal anomaly at ≥20 weeks' gestation.

 

Disclosures: This study did not report the source of funding. The authors declared no conflicts of interest.

 

Source: Stewart B et al. Medical termination of pregnancy for fetal anomaly at or beyond 20 weeks' gestation-What are the maternal risks? Prenat Diagn. 2022 (Sep 25). Doi: 10.1002/pd.6241

 

 

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Risk for early-onset preeclampsia with gestational use of antihistamines in allergic women

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Key clinical point: The use vs non-use of antihistamines during later stages (20-36 weeks) of pregnancy increased the risk for early-onset preeclampsia in women with allergy, whereas the risk was insignificant with antihistamine use before (<6 months) or during early stages of (<20 weeks) pregnancy.

 

Major finding: Compared with no antihistamine use, the risk for early-onset preeclampsia (<34 weeks in pregnancy) was high among women with allergy who used antihistamines during late pregnancy (odds ratio [OR] 1.8; 95% CI 1.5-2.2), but was insignificant among those who used antihistamines before or during early pregnancy.

 

Study details: Findings are from a population-based cohort study including 692,487 pregnancies in women with allergy; 101,287 women used antihistamines either before or during early or late pregnancy.

 

Disclosures: This study was funded by the University of Bergen. No conflicts of interest were declared.

 

Source: Sande AK et al. Use of antihistamines before or during pregnancy and risk of early-onset pre-eclampsia in allergic women: A population-based cohort study. BMJ Open. 2022;12(10):e061837 (Oct 7). Doi: 10.1136/bmjopen-2022-061837

 

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Key clinical point: The use vs non-use of antihistamines during later stages (20-36 weeks) of pregnancy increased the risk for early-onset preeclampsia in women with allergy, whereas the risk was insignificant with antihistamine use before (<6 months) or during early stages of (<20 weeks) pregnancy.

 

Major finding: Compared with no antihistamine use, the risk for early-onset preeclampsia (<34 weeks in pregnancy) was high among women with allergy who used antihistamines during late pregnancy (odds ratio [OR] 1.8; 95% CI 1.5-2.2), but was insignificant among those who used antihistamines before or during early pregnancy.

 

Study details: Findings are from a population-based cohort study including 692,487 pregnancies in women with allergy; 101,287 women used antihistamines either before or during early or late pregnancy.

 

Disclosures: This study was funded by the University of Bergen. No conflicts of interest were declared.

 

Source: Sande AK et al. Use of antihistamines before or during pregnancy and risk of early-onset pre-eclampsia in allergic women: A population-based cohort study. BMJ Open. 2022;12(10):e061837 (Oct 7). Doi: 10.1136/bmjopen-2022-061837

 

Key clinical point: The use vs non-use of antihistamines during later stages (20-36 weeks) of pregnancy increased the risk for early-onset preeclampsia in women with allergy, whereas the risk was insignificant with antihistamine use before (<6 months) or during early stages of (<20 weeks) pregnancy.

 

Major finding: Compared with no antihistamine use, the risk for early-onset preeclampsia (<34 weeks in pregnancy) was high among women with allergy who used antihistamines during late pregnancy (odds ratio [OR] 1.8; 95% CI 1.5-2.2), but was insignificant among those who used antihistamines before or during early pregnancy.

 

Study details: Findings are from a population-based cohort study including 692,487 pregnancies in women with allergy; 101,287 women used antihistamines either before or during early or late pregnancy.

 

Disclosures: This study was funded by the University of Bergen. No conflicts of interest were declared.

 

Source: Sande AK et al. Use of antihistamines before or during pregnancy and risk of early-onset pre-eclampsia in allergic women: A population-based cohort study. BMJ Open. 2022;12(10):e061837 (Oct 7). Doi: 10.1136/bmjopen-2022-061837

 

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Maternal cardiomyopathy tied to adverse perinatal outcomes

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Key clinical point: Pregnancies complicated by cardiomyopathy are more likely to result in adverse perinatal outcomes, including stillbirth, neonatal mortality, preterm birth, and small-for-gestational age neonates compared to healthy pregnancies or those with no other cardiac diseases.

 

Major finding: Pregnancies complicated by cardiomyopathy vs healthy pregnancies were more likely to result in stillbirth (odds ratio [OR] 20.82; P < .00001), neonatal mortality (OR 6.75; P < .00001), preterm birth (OR 5.95; P < .00001), and small-for-gestational age neonates (OR 6.74; P < .00001), with outcomes being similar when compared with pregnancies complicated by other forms of cardiac disease.

 

Study details: Findings are from a systematic review and meta-analysis of 13 observational cohort, case-control, and case-cohort studies including 2,291,024 pregnancies either complicated by cardiomyopathy or other forms of cardiac diseases and those with no cardiac diseases.

 

Disclosures: CE Aiken was supported by the UK Medical Research Council New Investigator Grant and NIHR Cambridge Biomedical Research Centre, UK. The authors declared no conflicts of interest.

 

Source: Eggleton EJ et al. Perinatal outcomes in pregnancies complicated by maternal cardiomyopathy: A systematic review and meta-analysis. Am J Obstet Gynecol. 2022 (Sep 20). Doi: 10.1016/j.ajog.2022.09.025

 

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Key clinical point: Pregnancies complicated by cardiomyopathy are more likely to result in adverse perinatal outcomes, including stillbirth, neonatal mortality, preterm birth, and small-for-gestational age neonates compared to healthy pregnancies or those with no other cardiac diseases.

 

Major finding: Pregnancies complicated by cardiomyopathy vs healthy pregnancies were more likely to result in stillbirth (odds ratio [OR] 20.82; P < .00001), neonatal mortality (OR 6.75; P < .00001), preterm birth (OR 5.95; P < .00001), and small-for-gestational age neonates (OR 6.74; P < .00001), with outcomes being similar when compared with pregnancies complicated by other forms of cardiac disease.

 

Study details: Findings are from a systematic review and meta-analysis of 13 observational cohort, case-control, and case-cohort studies including 2,291,024 pregnancies either complicated by cardiomyopathy or other forms of cardiac diseases and those with no cardiac diseases.

 

Disclosures: CE Aiken was supported by the UK Medical Research Council New Investigator Grant and NIHR Cambridge Biomedical Research Centre, UK. The authors declared no conflicts of interest.

 

Source: Eggleton EJ et al. Perinatal outcomes in pregnancies complicated by maternal cardiomyopathy: A systematic review and meta-analysis. Am J Obstet Gynecol. 2022 (Sep 20). Doi: 10.1016/j.ajog.2022.09.025

 

Key clinical point: Pregnancies complicated by cardiomyopathy are more likely to result in adverse perinatal outcomes, including stillbirth, neonatal mortality, preterm birth, and small-for-gestational age neonates compared to healthy pregnancies or those with no other cardiac diseases.

 

Major finding: Pregnancies complicated by cardiomyopathy vs healthy pregnancies were more likely to result in stillbirth (odds ratio [OR] 20.82; P < .00001), neonatal mortality (OR 6.75; P < .00001), preterm birth (OR 5.95; P < .00001), and small-for-gestational age neonates (OR 6.74; P < .00001), with outcomes being similar when compared with pregnancies complicated by other forms of cardiac disease.

 

Study details: Findings are from a systematic review and meta-analysis of 13 observational cohort, case-control, and case-cohort studies including 2,291,024 pregnancies either complicated by cardiomyopathy or other forms of cardiac diseases and those with no cardiac diseases.

 

Disclosures: CE Aiken was supported by the UK Medical Research Council New Investigator Grant and NIHR Cambridge Biomedical Research Centre, UK. The authors declared no conflicts of interest.

 

Source: Eggleton EJ et al. Perinatal outcomes in pregnancies complicated by maternal cardiomyopathy: A systematic review and meta-analysis. Am J Obstet Gynecol. 2022 (Sep 20). Doi: 10.1016/j.ajog.2022.09.025

 

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