Dementia is a family of disorders characterized by a decline in multiple cognitive abilities that significantly interferes with an individual’s functioning. An estimated 50 million people are living with a dementia worldwide.¹ Alzheimer’s disease (AD) is the leading cause of dementia, accounting for approximately two-thirds of dementia cases.¹ These numbers are expected to increase dramatically in the upcoming decades.

Sociologist Erving Goffman defined stigma as “an attribute, behaviour, or reputation which is socially discrediting in a particular way: it causes an individual to be mentally classified by others in an undesirable, rejected stereotype rather than in an accepted, normal one.”² Goffman² defined 3 broad categories of stigma: public, self, and courtesy (Table 1²).

Considerable evidence shows that the combined impact of having dementia and the negative response to the diagnosis significantly undermines an individual’s psychosocial well-being and quality of life.³ Persons with dementia (PwD) commonly report a loss of identity and self-worth, and stigma appears to deepen this distress.³ Stigma also negatively affects individuals associated with PwD, including family members and professionals. In this article, we discuss the impact of dementia-related stigma, and steps you can take to address it, including implementing person-centered clinical practices, promoting anti-stigma messaging campaigns, and advocating for public policy action to improve the lives of PwD and their families.

A pervasive problem

Although the Alzheimer’s Society International and the World Health Organi­zation acknowledge that stigma has a central role in defining the experience of AD, how stigma may present, how clinicians and researchers can recognize and measure stigma, and how to best combat it have been understudied.^3-5 A recent systematic literature review examined worldwide evidence on dementia-related stigma over the past decade.⁶ Hermann et al⁶ found that health care providers and the general public may hold stigmatizing attitudes toward PwD, and that stigma may be particularly harsh among racial and ethnic minorities, although the literature is scarce in this area. Cultural factors may also worsen stigma, and stigma may be associated with reduced awareness of dementia services and reduced help-seeking among minority groups.^7,8 Studies show that stigmatizing attitudes are more pronounced in people with limited knowledge of dementia, in those with little contact with PwD, in men, in younger individuals, and in the context of cultural interpretations of dementia.⁶ Health care providers can also sometimes contribute to the perpetuation of stigma.⁶

In terms of standardized scales or instruments for evaluating dementia-related stigma, there is no uniformly accepted “gold standard” measure, which makes it difficult to compare studies.⁶ In order to effectively study efforts to reduce stigma, researchers need to identify and establish a consensus on rating scales for evaluating stigma among PwD, caregivers, and the general public. Three instruments that may be used for this purpose are the Family Stigma in Alzheimer’s Disease Scale (FS-ADS),⁹ the Stigma Scale for Chronic Illness (SSCI),¹⁰ and the Perceptions Regarding Investigational Screening for Memory in Primary Care (PRISM-PC).¹¹

The detrimental effects of stigma

Burgener et al¹² reported that personal stigma impacted functioning and quality of life in PwD. Higher levels of stigma were associated with higher anxiety, depression, and behavioral symptoms and lower self-esteem, social support, participation in activities, personal control, and physical health.¹² Personal characteristics that may affect stigma include gender, location (rural vs urban), ethnicity, education level, and living arrangements (alone vs with family).¹²

In a subset of PwD with early-stage memory loss (n = 22), Burgener and Buckwalter¹³ found that 42% of participants were reluctant to reveal their diagnosis to others, with some fearing they would no longer be allowed to live alone and would be “sent to a facility.” In addition, 46% indicated they did not want “to be talked about like they were not there.” More than 50% of participants reported changes in their social network after receiving the diagnosis, including reducing activities and limiting types of contacts (ie, telephone only) or interacting only when “people come to me.” Participants were most comfortable with good friends “who understand” and persons within their faith communities. When asked about how they were treated by family members, >50% of participants described being treated differently, including loss of financial independence, more limited contact, and being “treated like a baby” by their children, who in general were uncomfortable talking about the diagnosis.

Continue to: In a recent study...

In a recent study by Harper et al,¹⁴ stigma was prevalent in the experience of PwD. One participant disclosed:

“I think there is [are] people I know who don’t ask me to go places or do things ’cause I have a dementia…I think lots of people don’t know what dementia is and I think it scares them ’cause they think of it as crazy. It hurts…”

Another participant said:

“I have had friends for over thirty years. They have turned their backs on me…we used to go for walks and they would phone me and go for coffee. Now I don’t hear from any of them…those aren’t true friends…true friends will stand behind you, not in front of you. That’s why I am not happy.”

Overall, quantitative and qualitative findings indicate multiple, detrimental effects of personal stigma on PwD. These effects fit well with measures of self-stigma, including social rejection (eg, being treated differently, participating in fewer activities, and having fewer friends), internalized shame (eg, being treated like a child, having fewer responsibilities, others acting as if dementia is “contagious”), and social isolation (eg, being less outgoing, feeling more comfortable in small groups, having limited social contacts).¹⁵

Continue to: Receiving a diagnosis of dementia...

Receiving a diagnosis of dementia presents patients and their families with psychological and social challenges.¹⁶ Many of these challenges are the consequence of stigma. A broad range of efforts are underway worldwide to reduce dementia-related stigma. These efforts include programs to promote public awareness and education, campaigns to develop inclusive social policies, and skills-based training initiatives to promote delivery of patient-centered care by clinicians and educators.^3,17,18 Many of these efforts share a common focus on promoting the “dignity” and “personhood” of PwD in order to disrupt stereotypes or fixed, oversimplified beliefs associated with dementia.

Implementing person-centered clinical care

In clinical practice, direct discussion that encourages reflection and the use of effective and sensitive communication can help to limit passing on stigmatizing beliefs and to reduce negative stereotypes associated with the disease. Health care communications that call attention to stereotypes may allow PwD to identify stereotypes as well as inaccuracies in those stereotypes. Interventions that validate the value of diversity can help PwD accept the ways in which they may not conform to social norms. This could include language such as “There is no one way to have Alzheimer’s disease. A person’s experience can differ from what others might experience or expect, and that’s okay.” In addition, the use of language that is accurate, respectful, inclusive, and empowering can support PwD and their caregivers.^19,20 For example, referring to PwD as “individuals living with dementia” rather than “those who are demented” conveys respect and appreciation for personhood. Other clinicians have provided additional practical suggestions.²¹

Anti-stigma messaging campaigns

The mass media is a common source of stereotypes about AD and other dementias. They typically present a “worst-case” scenario that promotes ageism, gerontophobia, and negative emotions, which may worsen stigma and discrimination towards PwD and the people who care for them. However, public messaging campaigns are emerging to counter negative messages and stereotypes in the mass media. Projects such as Typical Day, People with Dementia, and other online anti-stigma messaging campaigns allow a broad audience to gain a more nuanced understanding of the lives of PwD and their caregivers. These projects are rich resources that offer education and personal stories that can counter common stereotypes about dementia.

Typical Day is a photography project developed and maintained by clinicians and researchers at the University of Pennsylvania. Since early 2017, the project has provided a forum for individuals with mild cognitive impairment or dementia to document their lives and show what it means to them to live with dementia. Participants in the project photo-document the people, places, and objects that define their daily lives. They review and explain these photos with researchers at Penn Memory Center, who help them tell their stories. The participants’ stories, the photos they capture, and their portraits are available at www.mytypicalday.org.

People of Dementia. Storytelling is a powerful way to raise awareness of and reduce the stigma associated with dementia. For PwD, telling their stories can be an effective and therapeutic way to communicate their emotions and deliver an important message. In the blog People of Dementia (www.peopleofdementia.com),^22,23 PwD highlight who they were before the disease and how things have changed, with family members highlighting the challenges of caring for a person with dementia.

Continue to: The common thread is...

The common thread is the enduring “person” behind the exterior that is obscured by dementia. By allowing the audience to form a connection with who the individual was prior to the disease, and understanding the changes that have come as a result of dementia to both PwD and their support network, readers gain a greater appreciation of those affected by dementia. Between May 1, 2017 and May 31, 2019, the blog had more than 3,860 visitors. In an accompanying online survey (N = 57), 79% of respondents agreed/strongly agreed that after visiting the People of Dementia blog, they had a better understanding of the changes that occur as a result of cognitive impairment/dementia (Figure 1). Almost two-thirds of respondents (65%) agreed/strongly agreed that they felt more comfortable interacting with PwD (Figure 2). Additionally, 60% of respondents agreed/strongly agreed that they were more encouraged to work with PwD, and 90% agreed/strongly agreed that they had a greater appreciation of the challenges of being a caregiver for PwD. Overall, these findings suggest that the People of Dementia blog is useful for engaging the public and promoting a better understanding of dementia.

Work for policy changes

Clinicians can support public policy through education and advocacy both in the delivery of care and as spokespersons and stakeholders in their local communities. Public policies are important for providing access to medical and social services to meet the needs of PwD and their caregivers. The absence—real or perceived—of sufficient resources exacerbates dementia-related stigma. In addition to facilitating access to resources, national dementia strategies or legal frameworks, such as the National Alzheimer’s Project Act in the United States, include policy initiatives to identify and promote communication approaches that are effective and sensitive with respect to people living with dementia and their caregivers.

State and local legislators and patient advocates are leading policy efforts to reduce dementia-related stigma. For example, Colorado recently changed statutory references from being specific to diseases that cause dementia to the broader, more inclusive phrase “dementia diseases and related disabilities.”¹⁸ In addition to making funds available to support caregiving services for PwD, this legislative change added training for first responders to better meet the needs of missing PwD, and shifted the terminology used to diagnose and communicate about diseases causing dementia. The shift in language added new terminology that was chosen for being more person-centered to replace prior references to “senior senility,” “senility,” and other terms with pejorative meanings.

In Canada, a National Dementia Strategy will commit the Canadian government to action with definitive timelines, targets, reporting structures, and measurable outcomes.²⁴

Table 2 summarizes approaches to addressing dementia-related stigma.

Continue to: An open discussion

 

 

An open discussion

Larger studies and testing of diverse approaches are needed to better understand whether intergenerational initiatives or other approaches can genuinely modify stigmatizing attitudes in various dementia populations, especially considering language, health literacy, cultural preferences, and other needs. The identified effects on physical and mental health, quality of life, self-esteem, and behavioral symptoms further support the extensive, negative effects of self-stigma on PwD, and emphasize the need to develop and test interventions to ameliorate these effects.

We presented at a Stigma Symposium at the 2018 Gerontological Society of America Annual Scientific Meeting in Boston, Massachusetts.²⁵ Attendees of this conference shared our concerns about the detrimental effects of stigma. The main question we were asked was “What can we do to reduce stigma?” Perhaps the most immediate response is that in order to move the stigma dial, clinicians need to recognize that stigma has multiple, broad-reaching, and negative effects on PwD and their families.⁶ Bringing the discussion into the open and targeting stigma at multiple levels needs to be addressed by clinicians, researchers, administrators, and society at large.

Bottom Line

Stigma has multiple, broad-reaching, and negative effects on persons with dementia and their families. In clinical practice, direct discussion that encourages reflection and the use of effective and sensitive communication can help to limit passing on stigmatizing beliefs and to reduce negative stereotypes associated with the disease. Anti-stigma messaging campaigns and public policy changes also can be used to address societal and social inequities of patients with dementia and their caregivers.

Related Resources

• Khoury R, Shach R, Nair A, et al. Can lifestyle modifications delay or prevent Alzheimer’s disease? Current Psychiatry. 2019;18(1):29-36,38.
• Burke AD, Burke WJ. Antipsychotics for patients with dementia: The road less traveled. Current Psychiatry. 2018;17(10):26-32,35-37.

Dementia is a family of disorders characterized by a decline in multiple cognitive abilities that significantly interferes with an individual’s functioning. An estimated 50 million people are living with a dementia worldwide.¹ Alzheimer’s disease (AD) is the leading cause of dementia, accounting for approximately two-thirds of dementia cases.¹ These numbers are expected to increase dramatically in the upcoming decades.

Sociologist Erving Goffman defined stigma as “an attribute, behaviour, or reputation which is socially discrediting in a particular way: it causes an individual to be mentally classified by others in an undesirable, rejected stereotype rather than in an accepted, normal one.”² Goffman² defined 3 broad categories of stigma: public, self, and courtesy (Table 1²).

Considerable evidence shows that the combined impact of having dementia and the negative response to the diagnosis significantly undermines an individual’s psychosocial well-being and quality of life.³ Persons with dementia (PwD) commonly report a loss of identity and self-worth, and stigma appears to deepen this distress.³ Stigma also negatively affects individuals associated with PwD, including family members and professionals. In this article, we discuss the impact of dementia-related stigma, and steps you can take to address it, including implementing person-centered clinical practices, promoting anti-stigma messaging campaigns, and advocating for public policy action to improve the lives of PwD and their families.

A pervasive problem

Although the Alzheimer’s Society International and the World Health Organi­zation acknowledge that stigma has a central role in defining the experience of AD, how stigma may present, how clinicians and researchers can recognize and measure stigma, and how to best combat it have been understudied.^3-5 A recent systematic literature review examined worldwide evidence on dementia-related stigma over the past decade.⁶ Hermann et al⁶ found that health care providers and the general public may hold stigmatizing attitudes toward PwD, and that stigma may be particularly harsh among racial and ethnic minorities, although the literature is scarce in this area. Cultural factors may also worsen stigma, and stigma may be associated with reduced awareness of dementia services and reduced help-seeking among minority groups.^7,8 Studies show that stigmatizing attitudes are more pronounced in people with limited knowledge of dementia, in those with little contact with PwD, in men, in younger individuals, and in the context of cultural interpretations of dementia.⁶ Health care providers can also sometimes contribute to the perpetuation of stigma.⁶

In terms of standardized scales or instruments for evaluating dementia-related stigma, there is no uniformly accepted “gold standard” measure, which makes it difficult to compare studies.⁶ In order to effectively study efforts to reduce stigma, researchers need to identify and establish a consensus on rating scales for evaluating stigma among PwD, caregivers, and the general public. Three instruments that may be used for this purpose are the Family Stigma in Alzheimer’s Disease Scale (FS-ADS),⁹ the Stigma Scale for Chronic Illness (SSCI),¹⁰ and the Perceptions Regarding Investigational Screening for Memory in Primary Care (PRISM-PC).¹¹

The detrimental effects of stigma

Burgener et al¹² reported that personal stigma impacted functioning and quality of life in PwD. Higher levels of stigma were associated with higher anxiety, depression, and behavioral symptoms and lower self-esteem, social support, participation in activities, personal control, and physical health.¹² Personal characteristics that may affect stigma include gender, location (rural vs urban), ethnicity, education level, and living arrangements (alone vs with family).¹²

In a subset of PwD with early-stage memory loss (n = 22), Burgener and Buckwalter¹³ found that 42% of participants were reluctant to reveal their diagnosis to others, with some fearing they would no longer be allowed to live alone and would be “sent to a facility.” In addition, 46% indicated they did not want “to be talked about like they were not there.” More than 50% of participants reported changes in their social network after receiving the diagnosis, including reducing activities and limiting types of contacts (ie, telephone only) or interacting only when “people come to me.” Participants were most comfortable with good friends “who understand” and persons within their faith communities. When asked about how they were treated by family members, >50% of participants described being treated differently, including loss of financial independence, more limited contact, and being “treated like a baby” by their children, who in general were uncomfortable talking about the diagnosis.

Continue to: In a recent study...

In a recent study by Harper et al,¹⁴ stigma was prevalent in the experience of PwD. One participant disclosed:

“I think there is [are] people I know who don’t ask me to go places or do things ’cause I have a dementia…I think lots of people don’t know what dementia is and I think it scares them ’cause they think of it as crazy. It hurts…”

Another participant said:

“I have had friends for over thirty years. They have turned their backs on me…we used to go for walks and they would phone me and go for coffee. Now I don’t hear from any of them…those aren’t true friends…true friends will stand behind you, not in front of you. That’s why I am not happy.”

Overall, quantitative and qualitative findings indicate multiple, detrimental effects of personal stigma on PwD. These effects fit well with measures of self-stigma, including social rejection (eg, being treated differently, participating in fewer activities, and having fewer friends), internalized shame (eg, being treated like a child, having fewer responsibilities, others acting as if dementia is “contagious”), and social isolation (eg, being less outgoing, feeling more comfortable in small groups, having limited social contacts).¹⁵

Continue to: Receiving a diagnosis of dementia...

Receiving a diagnosis of dementia presents patients and their families with psychological and social challenges.¹⁶ Many of these challenges are the consequence of stigma. A broad range of efforts are underway worldwide to reduce dementia-related stigma. These efforts include programs to promote public awareness and education, campaigns to develop inclusive social policies, and skills-based training initiatives to promote delivery of patient-centered care by clinicians and educators.^3,17,18 Many of these efforts share a common focus on promoting the “dignity” and “personhood” of PwD in order to disrupt stereotypes or fixed, oversimplified beliefs associated with dementia.

Implementing person-centered clinical care

In clinical practice, direct discussion that encourages reflection and the use of effective and sensitive communication can help to limit passing on stigmatizing beliefs and to reduce negative stereotypes associated with the disease. Health care communications that call attention to stereotypes may allow PwD to identify stereotypes as well as inaccuracies in those stereotypes. Interventions that validate the value of diversity can help PwD accept the ways in which they may not conform to social norms. This could include language such as “There is no one way to have Alzheimer’s disease. A person’s experience can differ from what others might experience or expect, and that’s okay.” In addition, the use of language that is accurate, respectful, inclusive, and empowering can support PwD and their caregivers.^19,20 For example, referring to PwD as “individuals living with dementia” rather than “those who are demented” conveys respect and appreciation for personhood. Other clinicians have provided additional practical suggestions.²¹

Anti-stigma messaging campaigns

The mass media is a common source of stereotypes about AD and other dementias. They typically present a “worst-case” scenario that promotes ageism, gerontophobia, and negative emotions, which may worsen stigma and discrimination towards PwD and the people who care for them. However, public messaging campaigns are emerging to counter negative messages and stereotypes in the mass media. Projects such as Typical Day, People with Dementia, and other online anti-stigma messaging campaigns allow a broad audience to gain a more nuanced understanding of the lives of PwD and their caregivers. These projects are rich resources that offer education and personal stories that can counter common stereotypes about dementia.

Typical Day is a photography project developed and maintained by clinicians and researchers at the University of Pennsylvania. Since early 2017, the project has provided a forum for individuals with mild cognitive impairment or dementia to document their lives and show what it means to them to live with dementia. Participants in the project photo-document the people, places, and objects that define their daily lives. They review and explain these photos with researchers at Penn Memory Center, who help them tell their stories. The participants’ stories, the photos they capture, and their portraits are available at www.mytypicalday.org.

People of Dementia. Storytelling is a powerful way to raise awareness of and reduce the stigma associated with dementia. For PwD, telling their stories can be an effective and therapeutic way to communicate their emotions and deliver an important message. In the blog People of Dementia (www.peopleofdementia.com),^22,23 PwD highlight who they were before the disease and how things have changed, with family members highlighting the challenges of caring for a person with dementia.

Continue to: The common thread is...

The common thread is the enduring “person” behind the exterior that is obscured by dementia. By allowing the audience to form a connection with who the individual was prior to the disease, and understanding the changes that have come as a result of dementia to both PwD and their support network, readers gain a greater appreciation of those affected by dementia. Between May 1, 2017 and May 31, 2019, the blog had more than 3,860 visitors. In an accompanying online survey (N = 57), 79% of respondents agreed/strongly agreed that after visiting the People of Dementia blog, they had a better understanding of the changes that occur as a result of cognitive impairment/dementia (Figure 1). Almost two-thirds of respondents (65%) agreed/strongly agreed that they felt more comfortable interacting with PwD (Figure 2). Additionally, 60% of respondents agreed/strongly agreed that they were more encouraged to work with PwD, and 90% agreed/strongly agreed that they had a greater appreciation of the challenges of being a caregiver for PwD. Overall, these findings suggest that the People of Dementia blog is useful for engaging the public and promoting a better understanding of dementia.

Work for policy changes

Clinicians can support public policy through education and advocacy both in the delivery of care and as spokespersons and stakeholders in their local communities. Public policies are important for providing access to medical and social services to meet the needs of PwD and their caregivers. The absence—real or perceived—of sufficient resources exacerbates dementia-related stigma. In addition to facilitating access to resources, national dementia strategies or legal frameworks, such as the National Alzheimer’s Project Act in the United States, include policy initiatives to identify and promote communication approaches that are effective and sensitive with respect to people living with dementia and their caregivers.

State and local legislators and patient advocates are leading policy efforts to reduce dementia-related stigma. For example, Colorado recently changed statutory references from being specific to diseases that cause dementia to the broader, more inclusive phrase “dementia diseases and related disabilities.”¹⁸ In addition to making funds available to support caregiving services for PwD, this legislative change added training for first responders to better meet the needs of missing PwD, and shifted the terminology used to diagnose and communicate about diseases causing dementia. The shift in language added new terminology that was chosen for being more person-centered to replace prior references to “senior senility,” “senility,” and other terms with pejorative meanings.

In Canada, a National Dementia Strategy will commit the Canadian government to action with definitive timelines, targets, reporting structures, and measurable outcomes.²⁴

Table 2 summarizes approaches to addressing dementia-related stigma.

Continue to: An open discussion

 

 

An open discussion

Larger studies and testing of diverse approaches are needed to better understand whether intergenerational initiatives or other approaches can genuinely modify stigmatizing attitudes in various dementia populations, especially considering language, health literacy, cultural preferences, and other needs. The identified effects on physical and mental health, quality of life, self-esteem, and behavioral symptoms further support the extensive, negative effects of self-stigma on PwD, and emphasize the need to develop and test interventions to ameliorate these effects.

We presented at a Stigma Symposium at the 2018 Gerontological Society of America Annual Scientific Meeting in Boston, Massachusetts.²⁵ Attendees of this conference shared our concerns about the detrimental effects of stigma. The main question we were asked was “What can we do to reduce stigma?” Perhaps the most immediate response is that in order to move the stigma dial, clinicians need to recognize that stigma has multiple, broad-reaching, and negative effects on PwD and their families.⁶ Bringing the discussion into the open and targeting stigma at multiple levels needs to be addressed by clinicians, researchers, administrators, and society at large.

Bottom Line

Stigma has multiple, broad-reaching, and negative effects on persons with dementia and their families. In clinical practice, direct discussion that encourages reflection and the use of effective and sensitive communication can help to limit passing on stigmatizing beliefs and to reduce negative stereotypes associated with the disease. Anti-stigma messaging campaigns and public policy changes also can be used to address societal and social inequities of patients with dementia and their caregivers.

Related Resources

• Khoury R, Shach R, Nair A, et al. Can lifestyle modifications delay or prevent Alzheimer’s disease? Current Psychiatry. 2019;18(1):29-36,38.
• Burke AD, Burke WJ. Antipsychotics for patients with dementia: The road less traveled. Current Psychiatry. 2018;17(10):26-32,35-37.

Dementia is a family of disorders characterized by a decline in multiple cognitive abilities that significantly interferes with an individual’s functioning. An estimated 50 million people are living with a dementia worldwide.¹ Alzheimer’s disease (AD) is the leading cause of dementia, accounting for approximately two-thirds of dementia cases.¹ These numbers are expected to increase dramatically in the upcoming decades.

Sociologist Erving Goffman defined stigma as “an attribute, behaviour, or reputation which is socially discrediting in a particular way: it causes an individual to be mentally classified by others in an undesirable, rejected stereotype rather than in an accepted, normal one.”² Goffman² defined 3 broad categories of stigma: public, self, and courtesy (Table 1²).

Considerable evidence shows that the combined impact of having dementia and the negative response to the diagnosis significantly undermines an individual’s psychosocial well-being and quality of life.³ Persons with dementia (PwD) commonly report a loss of identity and self-worth, and stigma appears to deepen this distress.³ Stigma also negatively affects individuals associated with PwD, including family members and professionals. In this article, we discuss the impact of dementia-related stigma, and steps you can take to address it, including implementing person-centered clinical practices, promoting anti-stigma messaging campaigns, and advocating for public policy action to improve the lives of PwD and their families.

A pervasive problem

Although the Alzheimer’s Society International and the World Health Organi­zation acknowledge that stigma has a central role in defining the experience of AD, how stigma may present, how clinicians and researchers can recognize and measure stigma, and how to best combat it have been understudied.^3-5 A recent systematic literature review examined worldwide evidence on dementia-related stigma over the past decade.⁶ Hermann et al⁶ found that health care providers and the general public may hold stigmatizing attitudes toward PwD, and that stigma may be particularly harsh among racial and ethnic minorities, although the literature is scarce in this area. Cultural factors may also worsen stigma, and stigma may be associated with reduced awareness of dementia services and reduced help-seeking among minority groups.^7,8 Studies show that stigmatizing attitudes are more pronounced in people with limited knowledge of dementia, in those with little contact with PwD, in men, in younger individuals, and in the context of cultural interpretations of dementia.⁶ Health care providers can also sometimes contribute to the perpetuation of stigma.⁶

In terms of standardized scales or instruments for evaluating dementia-related stigma, there is no uniformly accepted “gold standard” measure, which makes it difficult to compare studies.⁶ In order to effectively study efforts to reduce stigma, researchers need to identify and establish a consensus on rating scales for evaluating stigma among PwD, caregivers, and the general public. Three instruments that may be used for this purpose are the Family Stigma in Alzheimer’s Disease Scale (FS-ADS),⁹ the Stigma Scale for Chronic Illness (SSCI),¹⁰ and the Perceptions Regarding Investigational Screening for Memory in Primary Care (PRISM-PC).¹¹

The detrimental effects of stigma

Burgener et al¹² reported that personal stigma impacted functioning and quality of life in PwD. Higher levels of stigma were associated with higher anxiety, depression, and behavioral symptoms and lower self-esteem, social support, participation in activities, personal control, and physical health.¹² Personal characteristics that may affect stigma include gender, location (rural vs urban), ethnicity, education level, and living arrangements (alone vs with family).¹²

In a subset of PwD with early-stage memory loss (n = 22), Burgener and Buckwalter¹³ found that 42% of participants were reluctant to reveal their diagnosis to others, with some fearing they would no longer be allowed to live alone and would be “sent to a facility.” In addition, 46% indicated they did not want “to be talked about like they were not there.” More than 50% of participants reported changes in their social network after receiving the diagnosis, including reducing activities and limiting types of contacts (ie, telephone only) or interacting only when “people come to me.” Participants were most comfortable with good friends “who understand” and persons within their faith communities. When asked about how they were treated by family members, >50% of participants described being treated differently, including loss of financial independence, more limited contact, and being “treated like a baby” by their children, who in general were uncomfortable talking about the diagnosis.

Continue to: In a recent study...

In a recent study by Harper et al,¹⁴ stigma was prevalent in the experience of PwD. One participant disclosed:

“I think there is [are] people I know who don’t ask me to go places or do things ’cause I have a dementia…I think lots of people don’t know what dementia is and I think it scares them ’cause they think of it as crazy. It hurts…”

Another participant said:

“I have had friends for over thirty years. They have turned their backs on me…we used to go for walks and they would phone me and go for coffee. Now I don’t hear from any of them…those aren’t true friends…true friends will stand behind you, not in front of you. That’s why I am not happy.”

Overall, quantitative and qualitative findings indicate multiple, detrimental effects of personal stigma on PwD. These effects fit well with measures of self-stigma, including social rejection (eg, being treated differently, participating in fewer activities, and having fewer friends), internalized shame (eg, being treated like a child, having fewer responsibilities, others acting as if dementia is “contagious”), and social isolation (eg, being less outgoing, feeling more comfortable in small groups, having limited social contacts).¹⁵

Continue to: Receiving a diagnosis of dementia...

Receiving a diagnosis of dementia presents patients and their families with psychological and social challenges.¹⁶ Many of these challenges are the consequence of stigma. A broad range of efforts are underway worldwide to reduce dementia-related stigma. These efforts include programs to promote public awareness and education, campaigns to develop inclusive social policies, and skills-based training initiatives to promote delivery of patient-centered care by clinicians and educators.^3,17,18 Many of these efforts share a common focus on promoting the “dignity” and “personhood” of PwD in order to disrupt stereotypes or fixed, oversimplified beliefs associated with dementia.

Implementing person-centered clinical care

In clinical practice, direct discussion that encourages reflection and the use of effective and sensitive communication can help to limit passing on stigmatizing beliefs and to reduce negative stereotypes associated with the disease. Health care communications that call attention to stereotypes may allow PwD to identify stereotypes as well as inaccuracies in those stereotypes. Interventions that validate the value of diversity can help PwD accept the ways in which they may not conform to social norms. This could include language such as “There is no one way to have Alzheimer’s disease. A person’s experience can differ from what others might experience or expect, and that’s okay.” In addition, the use of language that is accurate, respectful, inclusive, and empowering can support PwD and their caregivers.^19,20 For example, referring to PwD as “individuals living with dementia” rather than “those who are demented” conveys respect and appreciation for personhood. Other clinicians have provided additional practical suggestions.²¹

Anti-stigma messaging campaigns

The mass media is a common source of stereotypes about AD and other dementias. They typically present a “worst-case” scenario that promotes ageism, gerontophobia, and negative emotions, which may worsen stigma and discrimination towards PwD and the people who care for them. However, public messaging campaigns are emerging to counter negative messages and stereotypes in the mass media. Projects such as Typical Day, People with Dementia, and other online anti-stigma messaging campaigns allow a broad audience to gain a more nuanced understanding of the lives of PwD and their caregivers. These projects are rich resources that offer education and personal stories that can counter common stereotypes about dementia.

Typical Day is a photography project developed and maintained by clinicians and researchers at the University of Pennsylvania. Since early 2017, the project has provided a forum for individuals with mild cognitive impairment or dementia to document their lives and show what it means to them to live with dementia. Participants in the project photo-document the people, places, and objects that define their daily lives. They review and explain these photos with researchers at Penn Memory Center, who help them tell their stories. The participants’ stories, the photos they capture, and their portraits are available at www.mytypicalday.org.

People of Dementia. Storytelling is a powerful way to raise awareness of and reduce the stigma associated with dementia. For PwD, telling their stories can be an effective and therapeutic way to communicate their emotions and deliver an important message. In the blog People of Dementia (www.peopleofdementia.com),^22,23 PwD highlight who they were before the disease and how things have changed, with family members highlighting the challenges of caring for a person with dementia.

Continue to: The common thread is...

The common thread is the enduring “person” behind the exterior that is obscured by dementia. By allowing the audience to form a connection with who the individual was prior to the disease, and understanding the changes that have come as a result of dementia to both PwD and their support network, readers gain a greater appreciation of those affected by dementia. Between May 1, 2017 and May 31, 2019, the blog had more than 3,860 visitors. In an accompanying online survey (N = 57), 79% of respondents agreed/strongly agreed that after visiting the People of Dementia blog, they had a better understanding of the changes that occur as a result of cognitive impairment/dementia (Figure 1). Almost two-thirds of respondents (65%) agreed/strongly agreed that they felt more comfortable interacting with PwD (Figure 2). Additionally, 60% of respondents agreed/strongly agreed that they were more encouraged to work with PwD, and 90% agreed/strongly agreed that they had a greater appreciation of the challenges of being a caregiver for PwD. Overall, these findings suggest that the People of Dementia blog is useful for engaging the public and promoting a better understanding of dementia.

Work for policy changes

Clinicians can support public policy through education and advocacy both in the delivery of care and as spokespersons and stakeholders in their local communities. Public policies are important for providing access to medical and social services to meet the needs of PwD and their caregivers. The absence—real or perceived—of sufficient resources exacerbates dementia-related stigma. In addition to facilitating access to resources, national dementia strategies or legal frameworks, such as the National Alzheimer’s Project Act in the United States, include policy initiatives to identify and promote communication approaches that are effective and sensitive with respect to people living with dementia and their caregivers.

State and local legislators and patient advocates are leading policy efforts to reduce dementia-related stigma. For example, Colorado recently changed statutory references from being specific to diseases that cause dementia to the broader, more inclusive phrase “dementia diseases and related disabilities.”¹⁸ In addition to making funds available to support caregiving services for PwD, this legislative change added training for first responders to better meet the needs of missing PwD, and shifted the terminology used to diagnose and communicate about diseases causing dementia. The shift in language added new terminology that was chosen for being more person-centered to replace prior references to “senior senility,” “senility,” and other terms with pejorative meanings.

In Canada, a National Dementia Strategy will commit the Canadian government to action with definitive timelines, targets, reporting structures, and measurable outcomes.²⁴

Table 2 summarizes approaches to addressing dementia-related stigma.

Continue to: An open discussion

 

 

An open discussion

Larger studies and testing of diverse approaches are needed to better understand whether intergenerational initiatives or other approaches can genuinely modify stigmatizing attitudes in various dementia populations, especially considering language, health literacy, cultural preferences, and other needs. The identified effects on physical and mental health, quality of life, self-esteem, and behavioral symptoms further support the extensive, negative effects of self-stigma on PwD, and emphasize the need to develop and test interventions to ameliorate these effects.

We presented at a Stigma Symposium at the 2018 Gerontological Society of America Annual Scientific Meeting in Boston, Massachusetts.²⁵ Attendees of this conference shared our concerns about the detrimental effects of stigma. The main question we were asked was “What can we do to reduce stigma?” Perhaps the most immediate response is that in order to move the stigma dial, clinicians need to recognize that stigma has multiple, broad-reaching, and negative effects on PwD and their families.⁶ Bringing the discussion into the open and targeting stigma at multiple levels needs to be addressed by clinicians, researchers, administrators, and society at large.

Bottom Line

Stigma has multiple, broad-reaching, and negative effects on persons with dementia and their families. In clinical practice, direct discussion that encourages reflection and the use of effective and sensitive communication can help to limit passing on stigmatizing beliefs and to reduce negative stereotypes associated with the disease. Anti-stigma messaging campaigns and public policy changes also can be used to address societal and social inequities of patients with dementia and their caregivers.

Related Resources

• Khoury R, Shach R, Nair A, et al. Can lifestyle modifications delay or prevent Alzheimer’s disease? Current Psychiatry. 2019;18(1):29-36,38.
• Burke AD, Burke WJ. Antipsychotics for patients with dementia: The road less traveled. Current Psychiatry. 2018;17(10):26-32,35-37.

References

1. CDC Childhood Injury Report: Patterns of Unintentional Injuries among 0-19 Year Olds in the United States, 2000-2006.  Centers for Disease Control and Prevention Web site. https://www.cdc.gov/safechild/pdf/cdc-childhoodinjury.pdf. Accessed June 26, 2019.
2. World Health Organization. Global Report on Drowning: Preventing a Leading Killer. https://apps.who.int/iris/bitstream/handle/10665/143893/9789241564786_eng.pdf;jsessionid=0B51AAEB51E29A603A0CABB41FCD96B5?sequence=1. Accessed June 26, 2019.
3. Vanden Esschert K, Haileyesus T, Tarrier AL, et al. Pool chemical injuries in public and residential settings—United States, 2008–2017, and New York, 2018. MMWR Morb Mortal Wkly Rep. 2019;68:433–438.
4. Healthy Swimming. Centers for Disease Control and Prevention Web site. https://www.cdc.gov/healthywater/swimming/index.html. Accessed June 26, 2019.

References

1. CDC Childhood Injury Report: Patterns of Unintentional Injuries among 0-19 Year Olds in the United States, 2000-2006.  Centers for Disease Control and Prevention Web site. https://www.cdc.gov/safechild/pdf/cdc-childhoodinjury.pdf. Accessed June 26, 2019.
2. World Health Organization. Global Report on Drowning: Preventing a Leading Killer. https://apps.who.int/iris/bitstream/handle/10665/143893/9789241564786_eng.pdf;jsessionid=0B51AAEB51E29A603A0CABB41FCD96B5?sequence=1. Accessed June 26, 2019.
3. Vanden Esschert K, Haileyesus T, Tarrier AL, et al. Pool chemical injuries in public and residential settings—United States, 2008–2017, and New York, 2018. MMWR Morb Mortal Wkly Rep. 2019;68:433–438.
4. Healthy Swimming. Centers for Disease Control and Prevention Web site. https://www.cdc.gov/healthywater/swimming/index.html. Accessed June 26, 2019.

References

1. CDC Childhood Injury Report: Patterns of Unintentional Injuries among 0-19 Year Olds in the United States, 2000-2006.  Centers for Disease Control and Prevention Web site. https://www.cdc.gov/safechild/pdf/cdc-childhoodinjury.pdf. Accessed June 26, 2019.
2. World Health Organization. Global Report on Drowning: Preventing a Leading Killer. https://apps.who.int/iris/bitstream/handle/10665/143893/9789241564786_eng.pdf;jsessionid=0B51AAEB51E29A603A0CABB41FCD96B5?sequence=1. Accessed June 26, 2019.
3. Vanden Esschert K, Haileyesus T, Tarrier AL, et al. Pool chemical injuries in public and residential settings—United States, 2008–2017, and New York, 2018. MMWR Morb Mortal Wkly Rep. 2019;68:433–438.
4. Healthy Swimming. Centers for Disease Control and Prevention Web site. https://www.cdc.gov/healthywater/swimming/index.html. Accessed June 26, 2019.

“Burnout” has been defined as long-term, unresolvable job stress that leads to exhaustion, depression, and in some tragic circumstances, suicide. One of our lead articles this month concerns an attempt to place a financial cost on physician burnout. More important, I think, is the toll burnout takes on an individual, their family, and their patients. In my role as Chief Clinical Officer of the University of Michigan Medical Group (our faculty and other clinical providers), I struggle to balance productivity demands with the increasing damage such demands are doing to our clinicians. Few primary care physicians at Michigan Medicine work full-time as clinicians (defined as 32 hours patient facing time per week for 46 weeks). Almost all request part-time status if they do not have protected, grant-funded time. They simply cannot keep up with the documentation required in our electronic health record, combined with our “patient-friendly” access via the electronic portal. One-third of the private practice group I helped build was part-time when I left in 2012, and it is not unusual to hear complaints about burnout from my ex-partners.

Let’s be clear, burnout is not going to be solved by increasing the resilience of our physicians or sending us to wellness seminars. That approach is a direct blame-the-victim paradigm. Physicians are burned out because of the constant assault on the core reasons we entered medicine – to help people (this assault has been termed “moral injury”). BPAs (best practice alerts), coding requirements, inbox demands, prior authorizations (see the practice management section of this issue), electronic-order entry, and most other practice enhancement tools rely on the willingness of physicians to sacrifice more time and energy and sit in front of a computer screen.

Salvation of our health care system will not come from mass retirements (although that is happening), concierge practices, part-time status, or other individual responses to this crisis. We will need a fundamental reorganization of our practice, where we (physicians) reduce our work to activities for which we trained combined with a shift of nonphysician work to others; better technology, virtual visits, and ancillary personnel. Patient expectations must be realistic and legal protections need strengthening. The politics of health care has focused on funds flow and ideology. We need a stronger voice that articulates the daily microaggressions that we each endure as we try to live Oslerian physician ideals.

John I. Allen, MD, MBA, AGAF
Editor in Chief

“Burnout” has been defined as long-term, unresolvable job stress that leads to exhaustion, depression, and in some tragic circumstances, suicide. One of our lead articles this month concerns an attempt to place a financial cost on physician burnout. More important, I think, is the toll burnout takes on an individual, their family, and their patients. In my role as Chief Clinical Officer of the University of Michigan Medical Group (our faculty and other clinical providers), I struggle to balance productivity demands with the increasing damage such demands are doing to our clinicians. Few primary care physicians at Michigan Medicine work full-time as clinicians (defined as 32 hours patient facing time per week for 46 weeks). Almost all request part-time status if they do not have protected, grant-funded time. They simply cannot keep up with the documentation required in our electronic health record, combined with our “patient-friendly” access via the electronic portal. One-third of the private practice group I helped build was part-time when I left in 2012, and it is not unusual to hear complaints about burnout from my ex-partners.

Let’s be clear, burnout is not going to be solved by increasing the resilience of our physicians or sending us to wellness seminars. That approach is a direct blame-the-victim paradigm. Physicians are burned out because of the constant assault on the core reasons we entered medicine – to help people (this assault has been termed “moral injury”). BPAs (best practice alerts), coding requirements, inbox demands, prior authorizations (see the practice management section of this issue), electronic-order entry, and most other practice enhancement tools rely on the willingness of physicians to sacrifice more time and energy and sit in front of a computer screen.

Salvation of our health care system will not come from mass retirements (although that is happening), concierge practices, part-time status, or other individual responses to this crisis. We will need a fundamental reorganization of our practice, where we (physicians) reduce our work to activities for which we trained combined with a shift of nonphysician work to others; better technology, virtual visits, and ancillary personnel. Patient expectations must be realistic and legal protections need strengthening. The politics of health care has focused on funds flow and ideology. We need a stronger voice that articulates the daily microaggressions that we each endure as we try to live Oslerian physician ideals.

John I. Allen, MD, MBA, AGAF
Editor in Chief

“Burnout” has been defined as long-term, unresolvable job stress that leads to exhaustion, depression, and in some tragic circumstances, suicide. One of our lead articles this month concerns an attempt to place a financial cost on physician burnout. More important, I think, is the toll burnout takes on an individual, their family, and their patients. In my role as Chief Clinical Officer of the University of Michigan Medical Group (our faculty and other clinical providers), I struggle to balance productivity demands with the increasing damage such demands are doing to our clinicians. Few primary care physicians at Michigan Medicine work full-time as clinicians (defined as 32 hours patient facing time per week for 46 weeks). Almost all request part-time status if they do not have protected, grant-funded time. They simply cannot keep up with the documentation required in our electronic health record, combined with our “patient-friendly” access via the electronic portal. One-third of the private practice group I helped build was part-time when I left in 2012, and it is not unusual to hear complaints about burnout from my ex-partners.

Let’s be clear, burnout is not going to be solved by increasing the resilience of our physicians or sending us to wellness seminars. That approach is a direct blame-the-victim paradigm. Physicians are burned out because of the constant assault on the core reasons we entered medicine – to help people (this assault has been termed “moral injury”). BPAs (best practice alerts), coding requirements, inbox demands, prior authorizations (see the practice management section of this issue), electronic-order entry, and most other practice enhancement tools rely on the willingness of physicians to sacrifice more time and energy and sit in front of a computer screen.

Salvation of our health care system will not come from mass retirements (although that is happening), concierge practices, part-time status, or other individual responses to this crisis. We will need a fundamental reorganization of our practice, where we (physicians) reduce our work to activities for which we trained combined with a shift of nonphysician work to others; better technology, virtual visits, and ancillary personnel. Patient expectations must be realistic and legal protections need strengthening. The politics of health care has focused on funds flow and ideology. We need a stronger voice that articulates the daily microaggressions that we each endure as we try to live Oslerian physician ideals.

John I. Allen, MD, MBA, AGAF
Editor in Chief

“When you’ve worked hard, and done well, and walked through that doorway of opportunity, you do not slam it shut behind you. You reach back and you give other folks the same chances that helped you succeed.” —Michelle Obama

We are at a point in time where awareness around the existing disparities in gender equity in academic medicine couldn’t be higher. It is time for us to take this knowledge and move swiftly into action. What’s one of the best ways to do this? Become a sponsor or be sponsored. “Sponsorship can effectively catapult nascent talent from unknown to rising-star status.”¹

Catapult—an excellent and fitting word to describe the effect sponsorship can have on careers. Women start out behind and often remain behind men, even with mentoring.² With the catapult of sponsorship, however, high-level career advancement is attainable. Studies show that sponsorship is significantly associated with success: 72.5% of men and 59.0% of women who reported sponsorship were successful, compared with 57.7% and 44.8% who did not report sponsorship.³ For women and underrepresented minorities, sponsorship is especially important and can “dramatically overcome many of the tripwires to achievement.”⁴

Sponsorship is a two-way proposition—and both the sponsor and protégé have responsibility to make the relationship successful. Want to be sponsored? Here’s what to do: (1) Broadcast your achievements. You don’t have to be a braggart, but you don’t need to be humble­—celebrate and share your achievements within and outside your network. (2) Seek out leaders of different backgrounds—sponsors don’t need to be just like you. Varied viewpoints bring broader perspectives to the challenges ahead as you climb the leadership ladder. (3) Clearly spell out your leadership goals for yourself and a potential sponsor. Then work to achieve your shared goals in a timely way.

Consider how you can be a sponsor, particularly for junior faculty and those from under-represented groups. Ask yourself: Who have you sponsored this week? Whose success have you celebrated this quarter? Who will you nominate for an award or recognition this year?

Sponsorship is an essential component of good leadership. Individual leaders and academic health centers (AHCs) must take a step forward toward equity by making sponsorship an expectation and strategic priority. Set the expectation that senior leaders will act as sponsors, set clear goals to work toward (ie, more female chairs, increasing recruitment and retention of underrepresented minorities, etc.), and track metrics.2 While “pay it forward” may seem cliché, sponsorship can truly be a remarkable opportunity for growth for both the sponsor and the protégé, and a winning proposition for the institution.

Disclosures

Dr. Spector reports other from I-PASS Patient Safety Institute, outside the submitted work; and she is a co-founder and holds equity in the I-PASS Patient Safety Institute and the Executive Director of Executive Leadership in Academic Medicine. Ms. Overholser has nothing to disclose.

“When you’ve worked hard, and done well, and walked through that doorway of opportunity, you do not slam it shut behind you. You reach back and you give other folks the same chances that helped you succeed.” —Michelle Obama

We are at a point in time where awareness around the existing disparities in gender equity in academic medicine couldn’t be higher. It is time for us to take this knowledge and move swiftly into action. What’s one of the best ways to do this? Become a sponsor or be sponsored. “Sponsorship can effectively catapult nascent talent from unknown to rising-star status.”¹

Catapult—an excellent and fitting word to describe the effect sponsorship can have on careers. Women start out behind and often remain behind men, even with mentoring.² With the catapult of sponsorship, however, high-level career advancement is attainable. Studies show that sponsorship is significantly associated with success: 72.5% of men and 59.0% of women who reported sponsorship were successful, compared with 57.7% and 44.8% who did not report sponsorship.³ For women and underrepresented minorities, sponsorship is especially important and can “dramatically overcome many of the tripwires to achievement.”⁴

Sponsorship is a two-way proposition—and both the sponsor and protégé have responsibility to make the relationship successful. Want to be sponsored? Here’s what to do: (1) Broadcast your achievements. You don’t have to be a braggart, but you don’t need to be humble­—celebrate and share your achievements within and outside your network. (2) Seek out leaders of different backgrounds—sponsors don’t need to be just like you. Varied viewpoints bring broader perspectives to the challenges ahead as you climb the leadership ladder. (3) Clearly spell out your leadership goals for yourself and a potential sponsor. Then work to achieve your shared goals in a timely way.

Consider how you can be a sponsor, particularly for junior faculty and those from under-represented groups. Ask yourself: Who have you sponsored this week? Whose success have you celebrated this quarter? Who will you nominate for an award or recognition this year?

Sponsorship is an essential component of good leadership. Individual leaders and academic health centers (AHCs) must take a step forward toward equity by making sponsorship an expectation and strategic priority. Set the expectation that senior leaders will act as sponsors, set clear goals to work toward (ie, more female chairs, increasing recruitment and retention of underrepresented minorities, etc.), and track metrics.2 While “pay it forward” may seem cliché, sponsorship can truly be a remarkable opportunity for growth for both the sponsor and the protégé, and a winning proposition for the institution.

Disclosures

Dr. Spector reports other from I-PASS Patient Safety Institute, outside the submitted work; and she is a co-founder and holds equity in the I-PASS Patient Safety Institute and the Executive Director of Executive Leadership in Academic Medicine. Ms. Overholser has nothing to disclose.

“When you’ve worked hard, and done well, and walked through that doorway of opportunity, you do not slam it shut behind you. You reach back and you give other folks the same chances that helped you succeed.” —Michelle Obama

We are at a point in time where awareness around the existing disparities in gender equity in academic medicine couldn’t be higher. It is time for us to take this knowledge and move swiftly into action. What’s one of the best ways to do this? Become a sponsor or be sponsored. “Sponsorship can effectively catapult nascent talent from unknown to rising-star status.”¹

Catapult—an excellent and fitting word to describe the effect sponsorship can have on careers. Women start out behind and often remain behind men, even with mentoring.² With the catapult of sponsorship, however, high-level career advancement is attainable. Studies show that sponsorship is significantly associated with success: 72.5% of men and 59.0% of women who reported sponsorship were successful, compared with 57.7% and 44.8% who did not report sponsorship.³ For women and underrepresented minorities, sponsorship is especially important and can “dramatically overcome many of the tripwires to achievement.”⁴

Sponsorship is a two-way proposition—and both the sponsor and protégé have responsibility to make the relationship successful. Want to be sponsored? Here’s what to do: (1) Broadcast your achievements. You don’t have to be a braggart, but you don’t need to be humble­—celebrate and share your achievements within and outside your network. (2) Seek out leaders of different backgrounds—sponsors don’t need to be just like you. Varied viewpoints bring broader perspectives to the challenges ahead as you climb the leadership ladder. (3) Clearly spell out your leadership goals for yourself and a potential sponsor. Then work to achieve your shared goals in a timely way.

Consider how you can be a sponsor, particularly for junior faculty and those from under-represented groups. Ask yourself: Who have you sponsored this week? Whose success have you celebrated this quarter? Who will you nominate for an award or recognition this year?

Sponsorship is an essential component of good leadership. Individual leaders and academic health centers (AHCs) must take a step forward toward equity by making sponsorship an expectation and strategic priority. Set the expectation that senior leaders will act as sponsors, set clear goals to work toward (ie, more female chairs, increasing recruitment and retention of underrepresented minorities, etc.), and track metrics.2 While “pay it forward” may seem cliché, sponsorship can truly be a remarkable opportunity for growth for both the sponsor and the protégé, and a winning proposition for the institution.

Disclosures

Dr. Spector reports other from I-PASS Patient Safety Institute, outside the submitted work; and she is a co-founder and holds equity in the I-PASS Patient Safety Institute and the Executive Director of Executive Leadership in Academic Medicine. Ms. Overholser has nothing to disclose.

SAN ANTONIO – Narcolepsy adversely impacts one’s health-related quality of life in a variety of ways, from elevated levels of depression to negative social stigma, results from a mixed methods study suggest.

Doug Brunk/MDedge News

“Despite established pharmacological treatments to reduce narcolepsy symptoms, health-related quality of life remains poor,” the study’s first author, Jason C. Ong, PhD, said at the annual meeting of the Associated Professional Sleep Societies. “The impact these symptoms have on functioning, the disease burden, and psychosocial functioning in particular is very important. Psychosocial functioning is particularly poor.”

Previous research has shown that people with narcolepsy have two- to four times the rate of psychiatric comorbidities and that health-related stigma is a predictor of depression and poor functioning, said Dr. Ong, a psychologist with the Center for Circadian and Sleep Medicine at the Northwestern University Feinberg School of Medicine, Chicago. In an effort to assess current practices for addressing the psychosocial needs of persons with narcolepsy and to identify potential strategies that could be used to develop a psychosocial intervention, he and his associates conducted a mixed methods study to examine how narcolepsy symptoms impact health-related quality of life and the appropriateness of different health-related quality of life measures for the disorder. “Our long-term goal is to see if we can use this information to help inform the feasibility of a psychosocial intervention to improve health-related quality of life,” he said.

For the study, 29 adults with an established diagnosis of narcolepsy completed online versions of the Patient Health Questionnaire-9 (PHQ-9), the Patient Reported Outcomes Measurement Information System (PROMIS), the 36-item Short Form Survey (SF-36), and the Epworth Sleepiness Scale (ESS). They also participated in a focus group, which consisted of questions pertaining to quality of life for persons with narcolepsy, current practices for addressing psychosocial health of affected individuals, and suggestions for developing a psychosocial intervention. The researchers used thematic analysis to reduce the qualitative data to key themes.

Most of the study participants (93%) were female, 90% were white, their mean age was 31, and their mean time since narcolepsy diagnosis was 4.3 years. Clinically significant elevations on the PROMIS scale, defined as a t-score of greater than 60, were reported for depression (t-score of 64.8), anxiety (66.3), fatigue (68.3), and sleep impairment (66.9). Elevations in depressive symptoms were reported on the PHQ-9 (a mean of 15.79), “which corresponds to moderately severe levels,” Dr. Ong said. “The ESS was highly elevated and fit well with the scales for sleep impairment as well as fatigue on the PROMIS. Overall, there was nice congruence across these measures.”

On the SF-36, the researchers observed that there were deficits in physical and emotional aspects of role limitations, and in energy/fatigue. “One thing we did find was a significant difference in general functioning, where patients with type 1 narcolepsy were worse off than those with type 2 narcolepsy (P less than .05).”


Qualitative data from focus groups revealed several key themes, including the perception that narcolepsy is poorly understood by the public and health care providers.

“People have the perception that if you have narcolepsy, you just feel fine and then you fall asleep,” Dr. Ong said. “They don’t understand that it’s a constant thing. Negative social stigma was also common. As a result, we found a lot of negative impact on self-esteem and self-efficacy. People talked about being hesitant to tell other people about their diagnosis, feeling that they’re ashamed of having narcolepsy. They felt less capable. One person said, ‘I get tired trying to explain why I’m tired.’”

Another common theme that emerged was the challenge of optimal treatment for their narcolepsy. Most patients met with sleep doctors or clinics every 3-6 months. “They said that this was generally good for discussing medications and symptom management, but there didn’t seem to be much time to talk about psychosocial aspects,” Dr. Ong said. “That seemed to be one area of need. There was also a strong dissatisfaction with mental health providers. People talked about how their mental health provider really didn’t understand narcolepsy. It did seem to reduce rapport and the ability to trust their therapist. Some talked about the challenges of accessibility. In some cases, people said their narcolepsy symptoms created challenges with appointment attendance.”

In terms of preferences for a psychosocial intervention, respondents generally “preferred some kind of online or Internet delivery,” he said. “They prefer a team approach with a clinician who’s knowledgeable about both sleep and mental health.”

Dr. Ong acknowledged certain limitations of the study, including its small sample size and the fact that it was not adequately powered to detect differences between type 1 and type 2 narcolepsy.

The study was funded by a grant from Wake Up Narcolepsy. Dr. Ong reported having no relevant financial disclosures.

[email protected]

SOURCE: Ong J et al., SLEEP 2019, abstract 0624.

SAN ANTONIO – Narcolepsy adversely impacts one’s health-related quality of life in a variety of ways, from elevated levels of depression to negative social stigma, results from a mixed methods study suggest.

Doug Brunk/MDedge News

“Despite established pharmacological treatments to reduce narcolepsy symptoms, health-related quality of life remains poor,” the study’s first author, Jason C. Ong, PhD, said at the annual meeting of the Associated Professional Sleep Societies. “The impact these symptoms have on functioning, the disease burden, and psychosocial functioning in particular is very important. Psychosocial functioning is particularly poor.”

Previous research has shown that people with narcolepsy have two- to four times the rate of psychiatric comorbidities and that health-related stigma is a predictor of depression and poor functioning, said Dr. Ong, a psychologist with the Center for Circadian and Sleep Medicine at the Northwestern University Feinberg School of Medicine, Chicago. In an effort to assess current practices for addressing the psychosocial needs of persons with narcolepsy and to identify potential strategies that could be used to develop a psychosocial intervention, he and his associates conducted a mixed methods study to examine how narcolepsy symptoms impact health-related quality of life and the appropriateness of different health-related quality of life measures for the disorder. “Our long-term goal is to see if we can use this information to help inform the feasibility of a psychosocial intervention to improve health-related quality of life,” he said.

For the study, 29 adults with an established diagnosis of narcolepsy completed online versions of the Patient Health Questionnaire-9 (PHQ-9), the Patient Reported Outcomes Measurement Information System (PROMIS), the 36-item Short Form Survey (SF-36), and the Epworth Sleepiness Scale (ESS). They also participated in a focus group, which consisted of questions pertaining to quality of life for persons with narcolepsy, current practices for addressing psychosocial health of affected individuals, and suggestions for developing a psychosocial intervention. The researchers used thematic analysis to reduce the qualitative data to key themes.

Most of the study participants (93%) were female, 90% were white, their mean age was 31, and their mean time since narcolepsy diagnosis was 4.3 years. Clinically significant elevations on the PROMIS scale, defined as a t-score of greater than 60, were reported for depression (t-score of 64.8), anxiety (66.3), fatigue (68.3), and sleep impairment (66.9). Elevations in depressive symptoms were reported on the PHQ-9 (a mean of 15.79), “which corresponds to moderately severe levels,” Dr. Ong said. “The ESS was highly elevated and fit well with the scales for sleep impairment as well as fatigue on the PROMIS. Overall, there was nice congruence across these measures.”

On the SF-36, the researchers observed that there were deficits in physical and emotional aspects of role limitations, and in energy/fatigue. “One thing we did find was a significant difference in general functioning, where patients with type 1 narcolepsy were worse off than those with type 2 narcolepsy (P less than .05).”


Qualitative data from focus groups revealed several key themes, including the perception that narcolepsy is poorly understood by the public and health care providers.

“People have the perception that if you have narcolepsy, you just feel fine and then you fall asleep,” Dr. Ong said. “They don’t understand that it’s a constant thing. Negative social stigma was also common. As a result, we found a lot of negative impact on self-esteem and self-efficacy. People talked about being hesitant to tell other people about their diagnosis, feeling that they’re ashamed of having narcolepsy. They felt less capable. One person said, ‘I get tired trying to explain why I’m tired.’”

Another common theme that emerged was the challenge of optimal treatment for their narcolepsy. Most patients met with sleep doctors or clinics every 3-6 months. “They said that this was generally good for discussing medications and symptom management, but there didn’t seem to be much time to talk about psychosocial aspects,” Dr. Ong said. “That seemed to be one area of need. There was also a strong dissatisfaction with mental health providers. People talked about how their mental health provider really didn’t understand narcolepsy. It did seem to reduce rapport and the ability to trust their therapist. Some talked about the challenges of accessibility. In some cases, people said their narcolepsy symptoms created challenges with appointment attendance.”

In terms of preferences for a psychosocial intervention, respondents generally “preferred some kind of online or Internet delivery,” he said. “They prefer a team approach with a clinician who’s knowledgeable about both sleep and mental health.”

Dr. Ong acknowledged certain limitations of the study, including its small sample size and the fact that it was not adequately powered to detect differences between type 1 and type 2 narcolepsy.

The study was funded by a grant from Wake Up Narcolepsy. Dr. Ong reported having no relevant financial disclosures.

[email protected]

SOURCE: Ong J et al., SLEEP 2019, abstract 0624.

SAN ANTONIO – Narcolepsy adversely impacts one’s health-related quality of life in a variety of ways, from elevated levels of depression to negative social stigma, results from a mixed methods study suggest.

Doug Brunk/MDedge News

“Despite established pharmacological treatments to reduce narcolepsy symptoms, health-related quality of life remains poor,” the study’s first author, Jason C. Ong, PhD, said at the annual meeting of the Associated Professional Sleep Societies. “The impact these symptoms have on functioning, the disease burden, and psychosocial functioning in particular is very important. Psychosocial functioning is particularly poor.”

Previous research has shown that people with narcolepsy have two- to four times the rate of psychiatric comorbidities and that health-related stigma is a predictor of depression and poor functioning, said Dr. Ong, a psychologist with the Center for Circadian and Sleep Medicine at the Northwestern University Feinberg School of Medicine, Chicago. In an effort to assess current practices for addressing the psychosocial needs of persons with narcolepsy and to identify potential strategies that could be used to develop a psychosocial intervention, he and his associates conducted a mixed methods study to examine how narcolepsy symptoms impact health-related quality of life and the appropriateness of different health-related quality of life measures for the disorder. “Our long-term goal is to see if we can use this information to help inform the feasibility of a psychosocial intervention to improve health-related quality of life,” he said.

For the study, 29 adults with an established diagnosis of narcolepsy completed online versions of the Patient Health Questionnaire-9 (PHQ-9), the Patient Reported Outcomes Measurement Information System (PROMIS), the 36-item Short Form Survey (SF-36), and the Epworth Sleepiness Scale (ESS). They also participated in a focus group, which consisted of questions pertaining to quality of life for persons with narcolepsy, current practices for addressing psychosocial health of affected individuals, and suggestions for developing a psychosocial intervention. The researchers used thematic analysis to reduce the qualitative data to key themes.

Most of the study participants (93%) were female, 90% were white, their mean age was 31, and their mean time since narcolepsy diagnosis was 4.3 years. Clinically significant elevations on the PROMIS scale, defined as a t-score of greater than 60, were reported for depression (t-score of 64.8), anxiety (66.3), fatigue (68.3), and sleep impairment (66.9). Elevations in depressive symptoms were reported on the PHQ-9 (a mean of 15.79), “which corresponds to moderately severe levels,” Dr. Ong said. “The ESS was highly elevated and fit well with the scales for sleep impairment as well as fatigue on the PROMIS. Overall, there was nice congruence across these measures.”

On the SF-36, the researchers observed that there were deficits in physical and emotional aspects of role limitations, and in energy/fatigue. “One thing we did find was a significant difference in general functioning, where patients with type 1 narcolepsy were worse off than those with type 2 narcolepsy (P less than .05).”


Qualitative data from focus groups revealed several key themes, including the perception that narcolepsy is poorly understood by the public and health care providers.

“People have the perception that if you have narcolepsy, you just feel fine and then you fall asleep,” Dr. Ong said. “They don’t understand that it’s a constant thing. Negative social stigma was also common. As a result, we found a lot of negative impact on self-esteem and self-efficacy. People talked about being hesitant to tell other people about their diagnosis, feeling that they’re ashamed of having narcolepsy. They felt less capable. One person said, ‘I get tired trying to explain why I’m tired.’”

Another common theme that emerged was the challenge of optimal treatment for their narcolepsy. Most patients met with sleep doctors or clinics every 3-6 months. “They said that this was generally good for discussing medications and symptom management, but there didn’t seem to be much time to talk about psychosocial aspects,” Dr. Ong said. “That seemed to be one area of need. There was also a strong dissatisfaction with mental health providers. People talked about how their mental health provider really didn’t understand narcolepsy. It did seem to reduce rapport and the ability to trust their therapist. Some talked about the challenges of accessibility. In some cases, people said their narcolepsy symptoms created challenges with appointment attendance.”

In terms of preferences for a psychosocial intervention, respondents generally “preferred some kind of online or Internet delivery,” he said. “They prefer a team approach with a clinician who’s knowledgeable about both sleep and mental health.”

Dr. Ong acknowledged certain limitations of the study, including its small sample size and the fact that it was not adequately powered to detect differences between type 1 and type 2 narcolepsy.

The study was funded by a grant from Wake Up Narcolepsy. Dr. Ong reported having no relevant financial disclosures.

[email protected]

SOURCE: Ong J et al., SLEEP 2019, abstract 0624.

FORT LAUDERDALE, Fla. – A study of sickle cell patients at a clinic in the Bronx found that upwards of 75% of them get a prescription for hydroxyurea to improve hemoglobin levels, but that one-third have discontinued use for various reasons, according to results reported at the 13^th annual Foundation for Sickle Cell Disease Research symposium here.

“The results identify variability in reported side effects and reasons for discontinuation, and highlight the importance of clear communication between providers and patients to discuss the benefits and challenges of hydroxyurea,” said Caterina Minniti, MD, professor of clinical medicine and pediatrics at Einstein College of Medicine and director of the Sickle Cell Center for Adults at Montefiore Hospital, Bronx, N.Y. The study analyzed self-reporting surveys completed by 224 adult outpatients in the Montefiore sickle cell clinic, and then verified the data in the electronic medical record, Dr. Minniti said. She noted, “Our population is unique in the Bronx in that we have a high percentage of Hispanic patients.” They comprised 24.1% of the study population.

“We found that 77.2% of the patients have ever been prescribed hydroxyurea,” she said. “That was really great.” Also, 91% of those with severe genotypes of SCD had been prescribed the drug; 68% of them were still taking hydroxyurea at the time of the survey, she said. Among patients with the mild genotype, 42.1% had been prescribed hydroxyurea and half were still on it when they completed their surveys.

When the survey evaluated how long patients had been taking the drug, she said, “That’s where I start to get concerned.” About half – 48.6% – had taken the drug for one to five years, “which is a very short period of time,” Dr. Minniti said. Another 15% were on hydroxyurea for less than a year, 23% for 5 to 10 years and 19% for 10 years or more.

The study drilled down into reasons why patients discontinued the drug. Side effects were cited by 24.6% (n=15). They include fatigue, hair loss, and GI upset. Other reasons include perceived ineffectiveness (16.4%, n=10); physician direction (14.8%, n=9), and reproductive health and ulcer formation (each at 8.2%, n=5).

“Many patients perceive ineffectiveness of hydroxyurea in the short term, but the benefits of hydoxyurea stem from chronic use over the long term,” Dr. Minniti said. She noted that some patients discontinued the drug for legitimate medical indications, “such as pregnancy and breast feeding, but were not restarted afterward.”

Dr. Minniti disclosed relationships with Novartis, Global Blood Therapeutics, Teutona, Bluebird Bio, GBT and Bayer.

SOURCE: Minniti C, et al. Abstract no. JSCDH-D-19-00058. Foundation for Sickle Cell Disease Research Symposium; Fort Lauderdale, Fla.; June 9, 2019.

FORT LAUDERDALE, Fla. – A study of sickle cell patients at a clinic in the Bronx found that upwards of 75% of them get a prescription for hydroxyurea to improve hemoglobin levels, but that one-third have discontinued use for various reasons, according to results reported at the 13^th annual Foundation for Sickle Cell Disease Research symposium here.

“The results identify variability in reported side effects and reasons for discontinuation, and highlight the importance of clear communication between providers and patients to discuss the benefits and challenges of hydroxyurea,” said Caterina Minniti, MD, professor of clinical medicine and pediatrics at Einstein College of Medicine and director of the Sickle Cell Center for Adults at Montefiore Hospital, Bronx, N.Y. The study analyzed self-reporting surveys completed by 224 adult outpatients in the Montefiore sickle cell clinic, and then verified the data in the electronic medical record, Dr. Minniti said. She noted, “Our population is unique in the Bronx in that we have a high percentage of Hispanic patients.” They comprised 24.1% of the study population.

“We found that 77.2% of the patients have ever been prescribed hydroxyurea,” she said. “That was really great.” Also, 91% of those with severe genotypes of SCD had been prescribed the drug; 68% of them were still taking hydroxyurea at the time of the survey, she said. Among patients with the mild genotype, 42.1% had been prescribed hydroxyurea and half were still on it when they completed their surveys.

When the survey evaluated how long patients had been taking the drug, she said, “That’s where I start to get concerned.” About half – 48.6% – had taken the drug for one to five years, “which is a very short period of time,” Dr. Minniti said. Another 15% were on hydroxyurea for less than a year, 23% for 5 to 10 years and 19% for 10 years or more.

The study drilled down into reasons why patients discontinued the drug. Side effects were cited by 24.6% (n=15). They include fatigue, hair loss, and GI upset. Other reasons include perceived ineffectiveness (16.4%, n=10); physician direction (14.8%, n=9), and reproductive health and ulcer formation (each at 8.2%, n=5).

“Many patients perceive ineffectiveness of hydroxyurea in the short term, but the benefits of hydoxyurea stem from chronic use over the long term,” Dr. Minniti said. She noted that some patients discontinued the drug for legitimate medical indications, “such as pregnancy and breast feeding, but were not restarted afterward.”

Dr. Minniti disclosed relationships with Novartis, Global Blood Therapeutics, Teutona, Bluebird Bio, GBT and Bayer.

SOURCE: Minniti C, et al. Abstract no. JSCDH-D-19-00058. Foundation for Sickle Cell Disease Research Symposium; Fort Lauderdale, Fla.; June 9, 2019.

FORT LAUDERDALE, Fla. – A study of sickle cell patients at a clinic in the Bronx found that upwards of 75% of them get a prescription for hydroxyurea to improve hemoglobin levels, but that one-third have discontinued use for various reasons, according to results reported at the 13^th annual Foundation for Sickle Cell Disease Research symposium here.

“The results identify variability in reported side effects and reasons for discontinuation, and highlight the importance of clear communication between providers and patients to discuss the benefits and challenges of hydroxyurea,” said Caterina Minniti, MD, professor of clinical medicine and pediatrics at Einstein College of Medicine and director of the Sickle Cell Center for Adults at Montefiore Hospital, Bronx, N.Y. The study analyzed self-reporting surveys completed by 224 adult outpatients in the Montefiore sickle cell clinic, and then verified the data in the electronic medical record, Dr. Minniti said. She noted, “Our population is unique in the Bronx in that we have a high percentage of Hispanic patients.” They comprised 24.1% of the study population.

“We found that 77.2% of the patients have ever been prescribed hydroxyurea,” she said. “That was really great.” Also, 91% of those with severe genotypes of SCD had been prescribed the drug; 68% of them were still taking hydroxyurea at the time of the survey, she said. Among patients with the mild genotype, 42.1% had been prescribed hydroxyurea and half were still on it when they completed their surveys.

When the survey evaluated how long patients had been taking the drug, she said, “That’s where I start to get concerned.” About half – 48.6% – had taken the drug for one to five years, “which is a very short period of time,” Dr. Minniti said. Another 15% were on hydroxyurea for less than a year, 23% for 5 to 10 years and 19% for 10 years or more.

The study drilled down into reasons why patients discontinued the drug. Side effects were cited by 24.6% (n=15). They include fatigue, hair loss, and GI upset. Other reasons include perceived ineffectiveness (16.4%, n=10); physician direction (14.8%, n=9), and reproductive health and ulcer formation (each at 8.2%, n=5).

“Many patients perceive ineffectiveness of hydroxyurea in the short term, but the benefits of hydoxyurea stem from chronic use over the long term,” Dr. Minniti said. She noted that some patients discontinued the drug for legitimate medical indications, “such as pregnancy and breast feeding, but were not restarted afterward.”

Dr. Minniti disclosed relationships with Novartis, Global Blood Therapeutics, Teutona, Bluebird Bio, GBT and Bayer.

SOURCE: Minniti C, et al. Abstract no. JSCDH-D-19-00058. Foundation for Sickle Cell Disease Research Symposium; Fort Lauderdale, Fla.; June 9, 2019.

FORT LAUDERDALE, FLA. – Hip joint pain and deterioration can be a painful and disabling outcome for patients with sickle cell disease, but femoral head core decompression with the addition of bone marrow aspirate concentrate decreases their pain and may help avoid or delay hip replacement, according to results of a pilot study presented at the annual meeting of the Foundation for Sickle Cell Disease Research.

Eric Fornari, MD, of the Children’s Hospital at Montefiore in Bronx, N.Y., reported on results of core decompression (CD) in 35 hips of 26 sickle cell patients; 17 underwent CD only and 18 had CD with injection of bone marrow aspirate concentrate (CD+BMAC). The average patient age was 24.3 years, with a range from 9.7-50.7 years.

“Compared to patients treated with CD alone, patients treated with CD+BMAC complained of significantly less pain and had significant improvement in their functional scores and patient-related outcomes at short-term follow-up,” Dr. Fornari said.

Among the CD+BMAC patients, pain scores declined two points on average, from 6 preoperatively to 4 postoperatively, he said. This was clinically significant, compared with the CD-only group, Dr. Fornari said.

Patients in the CD+BMAC group also reported consistently superior hip outcome and modified Harris hip scores. With either treatment, more than 90% of patients were pain-free and walked independently at their most recent follow-up, he said.

The objective of CD is to relieve pressure within the head of the femur, stimulate vascularity and target the avascular necrosis (AVN) lesion within the head that is visible on imaging. To get the bone marrow aspirate concentrate, Dr. Fornari extracts 120 cc of bone marrow from the iliac crest, then concentrates it to 12 cc. The same instrument is used to tap into the femoral head and inject the bone marrow aspirate concentrate. The study looked at clinical and radiographic outcomes of treated patients.

Average follow-up for the entire study population was 3.6 years, but that varied widely between the two groups (CD-only at almost 6 years, CD+BMAC at 1.4 years) because CD+BMAC has only been done for the last 3 years, Dr. Fornari said.

Progression to total hip arthroplasty (THA) was similar between both groups: 5 of 17 patients (29%) for CD-only vs. 4 of 18 patients (22%) for CD+BMAC (P = .711).

“When you look at progression, there were a number of hips that got CD or CD+BMAC and were better postoperatively; they went from a Ficat score of stage II to a stage I, or stage III to stage II,” he said.

X-rays were not always a reliable marker of outcome after either CD procedure, Dr. Fornari noted. “I’ve seen patients who’ve had terrible looking X-rays who have no pain, and patients who have totally normal X-rays that are completely debilitated,” he said. “We have to start asking ourselves, ‘What is the marker of success?’ because when we do this patients are feeling better.”

Multivariate analysis was used to identify factors predictive of progression to THA after the procedure, Dr. Fornari said. “Age of diagnosis, age of surgery, female gender, and lower hydroxyurea dose at surgery were predictive of advancing disease, whereas a higher dose of hydroxyurea was predictive against advancement,” he said.

The average age of patients who had no THA after either procedure was 21 years, compared with 33.9 years for those who had THA (P = .003). Average hydroxyurea dose at surgery was 24.7 mg/kg in the no-THA group vs. 12.5 mg/kg in those who had THA (P = .005).

Notably, there were no readmissions, fractures, deep vein thromboses, pulmonary embolisms or infarctions after CD, Dr. Fornari said. Transfusions were required in two CD-only and three CD+BMAC patients. Hospitalization rates for vaso-occlusive crisis were similar between groups (P = .103).

Dr. Fornari said the challenge is to identify suitable patients for these procedures. “These are complicated patients and you don’t want to put them through the process of having surgery, putting them on crutches and restricted weight bearing, if they’re not going to get better,” he said. “This procedure done minimally invasively is not the end all and be all, but we have to figure out who are the right patients for it. Patient selection is key.”

Finding those patients starts with a rigorous history and physical exam, he said. Physicians should have a “low threshold” for MRI in these patients because that will reveal findings, such as pre-collapse disease and characteristic of AVN lesions, that may appear normal on X-ray. Patient education is also important. “To think that an injection into the top of the hip is going to solve all their problems is a little naive, so you have to have an honest conversation with the patient,” he said.

Dr. Fornari reported having no financial disclosures.

SOURCE: Fornari ED et al. FSCDR 2019, Abstract JSCDH-D-19-00004.

FORT LAUDERDALE, FLA. – Hip joint pain and deterioration can be a painful and disabling outcome for patients with sickle cell disease, but femoral head core decompression with the addition of bone marrow aspirate concentrate decreases their pain and may help avoid or delay hip replacement, according to results of a pilot study presented at the annual meeting of the Foundation for Sickle Cell Disease Research.

Eric Fornari, MD, of the Children’s Hospital at Montefiore in Bronx, N.Y., reported on results of core decompression (CD) in 35 hips of 26 sickle cell patients; 17 underwent CD only and 18 had CD with injection of bone marrow aspirate concentrate (CD+BMAC). The average patient age was 24.3 years, with a range from 9.7-50.7 years.

“Compared to patients treated with CD alone, patients treated with CD+BMAC complained of significantly less pain and had significant improvement in their functional scores and patient-related outcomes at short-term follow-up,” Dr. Fornari said.

Among the CD+BMAC patients, pain scores declined two points on average, from 6 preoperatively to 4 postoperatively, he said. This was clinically significant, compared with the CD-only group, Dr. Fornari said.

Patients in the CD+BMAC group also reported consistently superior hip outcome and modified Harris hip scores. With either treatment, more than 90% of patients were pain-free and walked independently at their most recent follow-up, he said.

The objective of CD is to relieve pressure within the head of the femur, stimulate vascularity and target the avascular necrosis (AVN) lesion within the head that is visible on imaging. To get the bone marrow aspirate concentrate, Dr. Fornari extracts 120 cc of bone marrow from the iliac crest, then concentrates it to 12 cc. The same instrument is used to tap into the femoral head and inject the bone marrow aspirate concentrate. The study looked at clinical and radiographic outcomes of treated patients.

Average follow-up for the entire study population was 3.6 years, but that varied widely between the two groups (CD-only at almost 6 years, CD+BMAC at 1.4 years) because CD+BMAC has only been done for the last 3 years, Dr. Fornari said.

Progression to total hip arthroplasty (THA) was similar between both groups: 5 of 17 patients (29%) for CD-only vs. 4 of 18 patients (22%) for CD+BMAC (P = .711).

“When you look at progression, there were a number of hips that got CD or CD+BMAC and were better postoperatively; they went from a Ficat score of stage II to a stage I, or stage III to stage II,” he said.

X-rays were not always a reliable marker of outcome after either CD procedure, Dr. Fornari noted. “I’ve seen patients who’ve had terrible looking X-rays who have no pain, and patients who have totally normal X-rays that are completely debilitated,” he said. “We have to start asking ourselves, ‘What is the marker of success?’ because when we do this patients are feeling better.”

Multivariate analysis was used to identify factors predictive of progression to THA after the procedure, Dr. Fornari said. “Age of diagnosis, age of surgery, female gender, and lower hydroxyurea dose at surgery were predictive of advancing disease, whereas a higher dose of hydroxyurea was predictive against advancement,” he said.

The average age of patients who had no THA after either procedure was 21 years, compared with 33.9 years for those who had THA (P = .003). Average hydroxyurea dose at surgery was 24.7 mg/kg in the no-THA group vs. 12.5 mg/kg in those who had THA (P = .005).

Notably, there were no readmissions, fractures, deep vein thromboses, pulmonary embolisms or infarctions after CD, Dr. Fornari said. Transfusions were required in two CD-only and three CD+BMAC patients. Hospitalization rates for vaso-occlusive crisis were similar between groups (P = .103).

Dr. Fornari said the challenge is to identify suitable patients for these procedures. “These are complicated patients and you don’t want to put them through the process of having surgery, putting them on crutches and restricted weight bearing, if they’re not going to get better,” he said. “This procedure done minimally invasively is not the end all and be all, but we have to figure out who are the right patients for it. Patient selection is key.”

Finding those patients starts with a rigorous history and physical exam, he said. Physicians should have a “low threshold” for MRI in these patients because that will reveal findings, such as pre-collapse disease and characteristic of AVN lesions, that may appear normal on X-ray. Patient education is also important. “To think that an injection into the top of the hip is going to solve all their problems is a little naive, so you have to have an honest conversation with the patient,” he said.

Dr. Fornari reported having no financial disclosures.

SOURCE: Fornari ED et al. FSCDR 2019, Abstract JSCDH-D-19-00004.

FORT LAUDERDALE, FLA. – Hip joint pain and deterioration can be a painful and disabling outcome for patients with sickle cell disease, but femoral head core decompression with the addition of bone marrow aspirate concentrate decreases their pain and may help avoid or delay hip replacement, according to results of a pilot study presented at the annual meeting of the Foundation for Sickle Cell Disease Research.

Eric Fornari, MD, of the Children’s Hospital at Montefiore in Bronx, N.Y., reported on results of core decompression (CD) in 35 hips of 26 sickle cell patients; 17 underwent CD only and 18 had CD with injection of bone marrow aspirate concentrate (CD+BMAC). The average patient age was 24.3 years, with a range from 9.7-50.7 years.

“Compared to patients treated with CD alone, patients treated with CD+BMAC complained of significantly less pain and had significant improvement in their functional scores and patient-related outcomes at short-term follow-up,” Dr. Fornari said.

Among the CD+BMAC patients, pain scores declined two points on average, from 6 preoperatively to 4 postoperatively, he said. This was clinically significant, compared with the CD-only group, Dr. Fornari said.

Patients in the CD+BMAC group also reported consistently superior hip outcome and modified Harris hip scores. With either treatment, more than 90% of patients were pain-free and walked independently at their most recent follow-up, he said.

The objective of CD is to relieve pressure within the head of the femur, stimulate vascularity and target the avascular necrosis (AVN) lesion within the head that is visible on imaging. To get the bone marrow aspirate concentrate, Dr. Fornari extracts 120 cc of bone marrow from the iliac crest, then concentrates it to 12 cc. The same instrument is used to tap into the femoral head and inject the bone marrow aspirate concentrate. The study looked at clinical and radiographic outcomes of treated patients.

Average follow-up for the entire study population was 3.6 years, but that varied widely between the two groups (CD-only at almost 6 years, CD+BMAC at 1.4 years) because CD+BMAC has only been done for the last 3 years, Dr. Fornari said.

Progression to total hip arthroplasty (THA) was similar between both groups: 5 of 17 patients (29%) for CD-only vs. 4 of 18 patients (22%) for CD+BMAC (P = .711).

“When you look at progression, there were a number of hips that got CD or CD+BMAC and were better postoperatively; they went from a Ficat score of stage II to a stage I, or stage III to stage II,” he said.

X-rays were not always a reliable marker of outcome after either CD procedure, Dr. Fornari noted. “I’ve seen patients who’ve had terrible looking X-rays who have no pain, and patients who have totally normal X-rays that are completely debilitated,” he said. “We have to start asking ourselves, ‘What is the marker of success?’ because when we do this patients are feeling better.”

Multivariate analysis was used to identify factors predictive of progression to THA after the procedure, Dr. Fornari said. “Age of diagnosis, age of surgery, female gender, and lower hydroxyurea dose at surgery were predictive of advancing disease, whereas a higher dose of hydroxyurea was predictive against advancement,” he said.

The average age of patients who had no THA after either procedure was 21 years, compared with 33.9 years for those who had THA (P = .003). Average hydroxyurea dose at surgery was 24.7 mg/kg in the no-THA group vs. 12.5 mg/kg in those who had THA (P = .005).

Notably, there were no readmissions, fractures, deep vein thromboses, pulmonary embolisms or infarctions after CD, Dr. Fornari said. Transfusions were required in two CD-only and three CD+BMAC patients. Hospitalization rates for vaso-occlusive crisis were similar between groups (P = .103).

Dr. Fornari said the challenge is to identify suitable patients for these procedures. “These are complicated patients and you don’t want to put them through the process of having surgery, putting them on crutches and restricted weight bearing, if they’re not going to get better,” he said. “This procedure done minimally invasively is not the end all and be all, but we have to figure out who are the right patients for it. Patient selection is key.”

Finding those patients starts with a rigorous history and physical exam, he said. Physicians should have a “low threshold” for MRI in these patients because that will reveal findings, such as pre-collapse disease and characteristic of AVN lesions, that may appear normal on X-ray. Patient education is also important. “To think that an injection into the top of the hip is going to solve all their problems is a little naive, so you have to have an honest conversation with the patient,” he said.

Dr. Fornari reported having no financial disclosures.

SOURCE: Fornari ED et al. FSCDR 2019, Abstract JSCDH-D-19-00004.

Current and former smokers are at significantly increased risk for acute complications after Mohs surgery, based on data from a retrospective case-control study of 1,008 adult patients.

Terroa/iStock/Getty Images

The increased risk of complications for smokers following many types of surgery is well documented; however, “the effect of smoking in the specific setting of cutaneous tissue transfer is not well characterized in the literature describing outcomes after Mohs reconstruction,” wrote Chang Ye Wang, MD, of St. Louis University, Missouri, and colleagues.

To determine the impact of smoking on acute and long-term complications, the researchers reviewed data from 1,008 adults (396 women and 612 men) who underwent Mohs surgery between July 1, 2012, and June 30, 2016, at a single center. The study population included 128 current smokers, 385 former smokers, and 495 never smokers. The age of the patients ranged from 21 years to 90 years, with a median of 70 years. The results were published in JAMA Facial Plastic Surgery.

The overall rate of acute complications was 4.1%, and the most common complication was infection, in 19 cases; others were 10 cases of flap or graft necrosis, 10 cases of wound dehiscence, and 6 of cases of hematoma or uncontrolled bleeding; some patients experienced more than one of these complications. The risk of acute complications increased for current smokers (odds ratio 9.58) and former smokers (OR, 3.64) in a multivariate analysis. Increased risk of acute complications also was associated with a larger defect (OR, 2.25) and use of free cartilage graft (OR, 8.19).

The researchers defined acute complications as “any postsurgical infection, dehiscence, hematoma, uncontrolled bleeding, and tissue necrosis that required medical counseling or intervention,” and long-term complications as “any postsurgical functional defect or unsatisfactory cosmesis that prompted the patient to request an additional procedural intervention or the surgeon to offer it.”

The overall rate of long-term complications was 7.4%. A procedure in the center of the face was associated with a 25% increased risk of long-term complications (OR, 25.4). Other factors associated with an increased risk of long-term complications were the use of interpolation flap or flap-graft combination (OR, 3.49), larger flaps (OR, 1.42), and presence of basal cell carcinomas or other basaloid tumors (OR, 3.43). Smoking was not associated with an increased risk of long-term complications, and an older age was associated with a decreased risk of long-term complications (OR, 0.66).

The findings were limited by the retrospective study design and unblinded data collection, as well as a lack of photographs of all patients at matching time points, the researchers said. However, the results are consistent with previous studies and “may allow the surgeon to better quantify the magnitude of risk and provide helpful information for patient counseling,” they added.

The researchers had no financial conflicts to disclose.

SOURCE: Wang CY et al. JAMA Facial Plast. Surg. 2019 June 13. doi: 10.1001/jamafacial.2019.0243.

Current and former smokers are at significantly increased risk for acute complications after Mohs surgery, based on data from a retrospective case-control study of 1,008 adult patients.

Terroa/iStock/Getty Images

The increased risk of complications for smokers following many types of surgery is well documented; however, “the effect of smoking in the specific setting of cutaneous tissue transfer is not well characterized in the literature describing outcomes after Mohs reconstruction,” wrote Chang Ye Wang, MD, of St. Louis University, Missouri, and colleagues.

To determine the impact of smoking on acute and long-term complications, the researchers reviewed data from 1,008 adults (396 women and 612 men) who underwent Mohs surgery between July 1, 2012, and June 30, 2016, at a single center. The study population included 128 current smokers, 385 former smokers, and 495 never smokers. The age of the patients ranged from 21 years to 90 years, with a median of 70 years. The results were published in JAMA Facial Plastic Surgery.

The overall rate of acute complications was 4.1%, and the most common complication was infection, in 19 cases; others were 10 cases of flap or graft necrosis, 10 cases of wound dehiscence, and 6 of cases of hematoma or uncontrolled bleeding; some patients experienced more than one of these complications. The risk of acute complications increased for current smokers (odds ratio 9.58) and former smokers (OR, 3.64) in a multivariate analysis. Increased risk of acute complications also was associated with a larger defect (OR, 2.25) and use of free cartilage graft (OR, 8.19).

The researchers defined acute complications as “any postsurgical infection, dehiscence, hematoma, uncontrolled bleeding, and tissue necrosis that required medical counseling or intervention,” and long-term complications as “any postsurgical functional defect or unsatisfactory cosmesis that prompted the patient to request an additional procedural intervention or the surgeon to offer it.”

The overall rate of long-term complications was 7.4%. A procedure in the center of the face was associated with a 25% increased risk of long-term complications (OR, 25.4). Other factors associated with an increased risk of long-term complications were the use of interpolation flap or flap-graft combination (OR, 3.49), larger flaps (OR, 1.42), and presence of basal cell carcinomas or other basaloid tumors (OR, 3.43). Smoking was not associated with an increased risk of long-term complications, and an older age was associated with a decreased risk of long-term complications (OR, 0.66).

The findings were limited by the retrospective study design and unblinded data collection, as well as a lack of photographs of all patients at matching time points, the researchers said. However, the results are consistent with previous studies and “may allow the surgeon to better quantify the magnitude of risk and provide helpful information for patient counseling,” they added.

The researchers had no financial conflicts to disclose.

SOURCE: Wang CY et al. JAMA Facial Plast. Surg. 2019 June 13. doi: 10.1001/jamafacial.2019.0243.

Current and former smokers are at significantly increased risk for acute complications after Mohs surgery, based on data from a retrospective case-control study of 1,008 adult patients.

Terroa/iStock/Getty Images

The increased risk of complications for smokers following many types of surgery is well documented; however, “the effect of smoking in the specific setting of cutaneous tissue transfer is not well characterized in the literature describing outcomes after Mohs reconstruction,” wrote Chang Ye Wang, MD, of St. Louis University, Missouri, and colleagues.

To determine the impact of smoking on acute and long-term complications, the researchers reviewed data from 1,008 adults (396 women and 612 men) who underwent Mohs surgery between July 1, 2012, and June 30, 2016, at a single center. The study population included 128 current smokers, 385 former smokers, and 495 never smokers. The age of the patients ranged from 21 years to 90 years, with a median of 70 years. The results were published in JAMA Facial Plastic Surgery.

The overall rate of acute complications was 4.1%, and the most common complication was infection, in 19 cases; others were 10 cases of flap or graft necrosis, 10 cases of wound dehiscence, and 6 of cases of hematoma or uncontrolled bleeding; some patients experienced more than one of these complications. The risk of acute complications increased for current smokers (odds ratio 9.58) and former smokers (OR, 3.64) in a multivariate analysis. Increased risk of acute complications also was associated with a larger defect (OR, 2.25) and use of free cartilage graft (OR, 8.19).

The researchers defined acute complications as “any postsurgical infection, dehiscence, hematoma, uncontrolled bleeding, and tissue necrosis that required medical counseling or intervention,” and long-term complications as “any postsurgical functional defect or unsatisfactory cosmesis that prompted the patient to request an additional procedural intervention or the surgeon to offer it.”

The overall rate of long-term complications was 7.4%. A procedure in the center of the face was associated with a 25% increased risk of long-term complications (OR, 25.4). Other factors associated with an increased risk of long-term complications were the use of interpolation flap or flap-graft combination (OR, 3.49), larger flaps (OR, 1.42), and presence of basal cell carcinomas or other basaloid tumors (OR, 3.43). Smoking was not associated with an increased risk of long-term complications, and an older age was associated with a decreased risk of long-term complications (OR, 0.66).

The findings were limited by the retrospective study design and unblinded data collection, as well as a lack of photographs of all patients at matching time points, the researchers said. However, the results are consistent with previous studies and “may allow the surgeon to better quantify the magnitude of risk and provide helpful information for patient counseling,” they added.

The researchers had no financial conflicts to disclose.

SOURCE: Wang CY et al. JAMA Facial Plast. Surg. 2019 June 13. doi: 10.1001/jamafacial.2019.0243.

Cyclosporine and methotrexate appear to have the lowest risk of serious infection at 6 months for patients with atopic dermatitis (AD) receiving systemic therapy in a real-world setting, according to a recently published population-based study.

Michail_Petrov-96/Thinkstock

When compared with methotrexate, there was a significant reduction in risk of serious infection at 6 months for patients with AD receiving cyclosporine. Prednisone, azathioprine, and mycophenolate carried higher risks of serious infections at 6 months than methotrexate or cyclosporine, researchers said in the study, which appeared in the Journal of the American Academy of Dermatology.

“Among non-biologic systemic agents, cyclosporine and methotrexate appear to have better safety profiles than mycophenolate, azathioprine, and systemic prednisone with regard to serious infections,” they concluded. “These findings may help inform clinicians in their selection of medications for patients requiring systemic therapy for atopic dermatitis,” Maria C. Schneeweiss, MD, from the departments of dermatology and medicine and Division of Pharmacoepidemiology and Pharmacoeconomics at Brigham and Women’s Hospital, Boston, and colleagues wrote in their study.

Using population-based claims data, the researchers evaluated rates of serious infection requiring hospitalization in 232,611 patients between January 2003 and January 2017 who received methotrexate, cyclosporine, azathioprine, prednisone or mycophenolate for treatment of AD. Patients first received the same level of corticosteroids before moving to systemic therapy or phototherapy. They also compared results with 23,908 patients in a second cohort who were new users of dupilumab (391 patients) or non-biologic systemic immunomodulators (23,517).

Overall, the rate of serious infections was 7.53 per 1,000 for patients receiving systemic non-biologic therapy at 6 months compared with 7.38 per 1,000 for patients receiving phototherapy, and 2.6 per 1,000 for patients receiving dupilumab.


When matching using propensity scores, the researchers found a significantly reduced risk at 6 months of serious infections from cyclosporine compared with methotrexate (relative risk, 0.87; 95% confidence interval, 0.59-1.28). Compared with methotrexate, there was an increased risk of serious infection at 6 months for azathioprine (RR, 1.78; 95% CI, 0.98-3.25), prednisone (RR, 1.89; 95% CI, 1.05-3.42) and mycophenolate (RR, 3.31; 95% CI, 1.94-5.64).

According to preliminary data, when compared with patients who received non-biologic systemic therapy, there was no increased risk for patients receiving dupilumab (RR, 0.33; 95% CI, 0.03-3.20). Dupilumab was approved in March 2017, and “with one year of data resulting in one event among 391 patients, this analysis is limited but does not show an obvious signal for increased risk” for dupilumab, they wrote.

Dr. Schneeweiss and colleagues noted some of their analyses had wide confidence intervals, they did not account for dosing schemes or cumulative dose exposure over the study period, and the data on dupilumab showing no increase were preliminary and not conclusive.

“Our findings on systemic non-biologics are highly plausible, given the known risk of systemic immunomodulators in patients treated for other indications, the meaningful effect size, and the methodologically robust approach with a new-user active-comparator design and propensity score matching,” the researchers said.

This study was funded in part by Brigham and Women’s Hospital in Boston. One author reported being a consultant for multiple pharmaceutical companies. The other authors report no relevant conflicts of interest.

SOURCE: Schneeweiss M, et al. J Am Acad Dermatol. 2019. doi:10.1016/j.jaad.2019.05.073.

Cyclosporine and methotrexate appear to have the lowest risk of serious infection at 6 months for patients with atopic dermatitis (AD) receiving systemic therapy in a real-world setting, according to a recently published population-based study.

Michail_Petrov-96/Thinkstock

When compared with methotrexate, there was a significant reduction in risk of serious infection at 6 months for patients with AD receiving cyclosporine. Prednisone, azathioprine, and mycophenolate carried higher risks of serious infections at 6 months than methotrexate or cyclosporine, researchers said in the study, which appeared in the Journal of the American Academy of Dermatology.

“Among non-biologic systemic agents, cyclosporine and methotrexate appear to have better safety profiles than mycophenolate, azathioprine, and systemic prednisone with regard to serious infections,” they concluded. “These findings may help inform clinicians in their selection of medications for patients requiring systemic therapy for atopic dermatitis,” Maria C. Schneeweiss, MD, from the departments of dermatology and medicine and Division of Pharmacoepidemiology and Pharmacoeconomics at Brigham and Women’s Hospital, Boston, and colleagues wrote in their study.

Using population-based claims data, the researchers evaluated rates of serious infection requiring hospitalization in 232,611 patients between January 2003 and January 2017 who received methotrexate, cyclosporine, azathioprine, prednisone or mycophenolate for treatment of AD. Patients first received the same level of corticosteroids before moving to systemic therapy or phototherapy. They also compared results with 23,908 patients in a second cohort who were new users of dupilumab (391 patients) or non-biologic systemic immunomodulators (23,517).

Overall, the rate of serious infections was 7.53 per 1,000 for patients receiving systemic non-biologic therapy at 6 months compared with 7.38 per 1,000 for patients receiving phototherapy, and 2.6 per 1,000 for patients receiving dupilumab.


When matching using propensity scores, the researchers found a significantly reduced risk at 6 months of serious infections from cyclosporine compared with methotrexate (relative risk, 0.87; 95% confidence interval, 0.59-1.28). Compared with methotrexate, there was an increased risk of serious infection at 6 months for azathioprine (RR, 1.78; 95% CI, 0.98-3.25), prednisone (RR, 1.89; 95% CI, 1.05-3.42) and mycophenolate (RR, 3.31; 95% CI, 1.94-5.64).

According to preliminary data, when compared with patients who received non-biologic systemic therapy, there was no increased risk for patients receiving dupilumab (RR, 0.33; 95% CI, 0.03-3.20). Dupilumab was approved in March 2017, and “with one year of data resulting in one event among 391 patients, this analysis is limited but does not show an obvious signal for increased risk” for dupilumab, they wrote.

Dr. Schneeweiss and colleagues noted some of their analyses had wide confidence intervals, they did not account for dosing schemes or cumulative dose exposure over the study period, and the data on dupilumab showing no increase were preliminary and not conclusive.

“Our findings on systemic non-biologics are highly plausible, given the known risk of systemic immunomodulators in patients treated for other indications, the meaningful effect size, and the methodologically robust approach with a new-user active-comparator design and propensity score matching,” the researchers said.

This study was funded in part by Brigham and Women’s Hospital in Boston. One author reported being a consultant for multiple pharmaceutical companies. The other authors report no relevant conflicts of interest.

SOURCE: Schneeweiss M, et al. J Am Acad Dermatol. 2019. doi:10.1016/j.jaad.2019.05.073.

Cyclosporine and methotrexate appear to have the lowest risk of serious infection at 6 months for patients with atopic dermatitis (AD) receiving systemic therapy in a real-world setting, according to a recently published population-based study.

Michail_Petrov-96/Thinkstock

When compared with methotrexate, there was a significant reduction in risk of serious infection at 6 months for patients with AD receiving cyclosporine. Prednisone, azathioprine, and mycophenolate carried higher risks of serious infections at 6 months than methotrexate or cyclosporine, researchers said in the study, which appeared in the Journal of the American Academy of Dermatology.

“Among non-biologic systemic agents, cyclosporine and methotrexate appear to have better safety profiles than mycophenolate, azathioprine, and systemic prednisone with regard to serious infections,” they concluded. “These findings may help inform clinicians in their selection of medications for patients requiring systemic therapy for atopic dermatitis,” Maria C. Schneeweiss, MD, from the departments of dermatology and medicine and Division of Pharmacoepidemiology and Pharmacoeconomics at Brigham and Women’s Hospital, Boston, and colleagues wrote in their study.

Using population-based claims data, the researchers evaluated rates of serious infection requiring hospitalization in 232,611 patients between January 2003 and January 2017 who received methotrexate, cyclosporine, azathioprine, prednisone or mycophenolate for treatment of AD. Patients first received the same level of corticosteroids before moving to systemic therapy or phototherapy. They also compared results with 23,908 patients in a second cohort who were new users of dupilumab (391 patients) or non-biologic systemic immunomodulators (23,517).

Overall, the rate of serious infections was 7.53 per 1,000 for patients receiving systemic non-biologic therapy at 6 months compared with 7.38 per 1,000 for patients receiving phototherapy, and 2.6 per 1,000 for patients receiving dupilumab.


When matching using propensity scores, the researchers found a significantly reduced risk at 6 months of serious infections from cyclosporine compared with methotrexate (relative risk, 0.87; 95% confidence interval, 0.59-1.28). Compared with methotrexate, there was an increased risk of serious infection at 6 months for azathioprine (RR, 1.78; 95% CI, 0.98-3.25), prednisone (RR, 1.89; 95% CI, 1.05-3.42) and mycophenolate (RR, 3.31; 95% CI, 1.94-5.64).

According to preliminary data, when compared with patients who received non-biologic systemic therapy, there was no increased risk for patients receiving dupilumab (RR, 0.33; 95% CI, 0.03-3.20). Dupilumab was approved in March 2017, and “with one year of data resulting in one event among 391 patients, this analysis is limited but does not show an obvious signal for increased risk” for dupilumab, they wrote.

Dr. Schneeweiss and colleagues noted some of their analyses had wide confidence intervals, they did not account for dosing schemes or cumulative dose exposure over the study period, and the data on dupilumab showing no increase were preliminary and not conclusive.

“Our findings on systemic non-biologics are highly plausible, given the known risk of systemic immunomodulators in patients treated for other indications, the meaningful effect size, and the methodologically robust approach with a new-user active-comparator design and propensity score matching,” the researchers said.

This study was funded in part by Brigham and Women’s Hospital in Boston. One author reported being a consultant for multiple pharmaceutical companies. The other authors report no relevant conflicts of interest.

SOURCE: Schneeweiss M, et al. J Am Acad Dermatol. 2019. doi:10.1016/j.jaad.2019.05.073.

SAN FRANCISCO – Here’s potential bad news for everyone who dines on skim milk and non-fat yogurt: High-fat dairy products may be better for you, at least if you want to stave off metabolic syndrome (MetS), according to a new study.

Jupiterimages/Getty Images

The findings aren’t conclusive. Still, researchers found that “among whites and African- Americans, the whole milk/high-fat dairy pattern had a protective effect on the risk of metabolic syndrome,” said epidemiologist and study lead author Dale Hardy, PhD, of Morehouse School of Medicine, in an interview. She presented the study findings at the scientific sessions of the American Diabetes Association.

Hardy launched her research as part of a project that’s examining relationships between diet, genes, type 2 diabetes, and cardiovascular diseases in whites and African-Americans.

According to a 2017 study, an estimated 34% of adults in the U.S. from 2007-2012 had MetS, defined as the presence of at least 3 of these factors – elevated waist circumference, elevated triglycerides, reduced high-density lipoprotein cholesterol, high blood pressure, and elevated fasting blood glucose (Prev Chronic Dis. 2017 Mar 16;14:E24).

MetS is linked to higher rates of a variety of ills, including cardiovascular disease, kidney disease, and early death.

For the new study, Dr. Hardy and colleagues examined data from the Atherosclerosis Risk in Communities study (1987-1998) and food questionnaires (1987 and 1993). There were 9,778 white participants and 2,922 African-American participants.

Subjects with diets higher in whole milk/high-fat dairy diets were significantly less likely to develop MetS per 5-unit increase at risk ratio (RR) =.96 (0.90-1.00), for whites and RR = .81 (0.72-0.90), for African-Americans.

But whites with skim milk/low-fat dairy diets had significantly higher risks of MetS per 5-unit increase at RR = 1.11 (1.06-1.17). There was also a higher risk for African-Americans but it was not statistically significant.

There was an even bigger bump in significant risk for those with diets higher in red and processed meat per 5-unit increase at RR = 1.17 (1.12-1.23), for whites and RR=1.16 (1.08-1.25), for African-Americans.

The researchers also found evidence that whole milk/high-fat dairy diets had an even greater protective effect in whites when genetic risk was present.

What’s going on? “Maybe the fat in the [dairy] foods is holding back glucose absorption and decreasing the risk for MetS over time,” Hardy said. “This fat is different from the animal fats from meats. Fat from dairy has a shorter molecular structure chain compared to the hard animal fats. Hard animal fats are more dangerous in terms of increasing the risk of type 2 diabetes and cardiovascular diseases.”

The dairy fat, Hardy said, could also be lowering insulin secretion.

So should everyone embrace whole milk and high-fat yogurt and cottage cheese? Hardy isn’t ready to offer this advice. “I don’t think that high-fat diary per se should be recommended as a miracle food to manage or prevent MetS,” she said. “I believe that the macronutrient composition of the meals and the day’s intake should be a more important feature of the diet. In addition, frequent exercise should be recommended to manage MetS.”

More analysis of the data is ongoing, Hardy said, and her team has found signs that diets higher in nuts and peanut butter are protective against MetS in whites.

The study was funded by the National Heart, Lung, and Blood Institute. The study authors had no relevant disclosures.

SOURCE: Hardy, D. et al. 2019 ADA annual meeting Abstract 1458-P.

SAN FRANCISCO – Here’s potential bad news for everyone who dines on skim milk and non-fat yogurt: High-fat dairy products may be better for you, at least if you want to stave off metabolic syndrome (MetS), according to a new study.

Jupiterimages/Getty Images

The findings aren’t conclusive. Still, researchers found that “among whites and African- Americans, the whole milk/high-fat dairy pattern had a protective effect on the risk of metabolic syndrome,” said epidemiologist and study lead author Dale Hardy, PhD, of Morehouse School of Medicine, in an interview. She presented the study findings at the scientific sessions of the American Diabetes Association.

Hardy launched her research as part of a project that’s examining relationships between diet, genes, type 2 diabetes, and cardiovascular diseases in whites and African-Americans.

According to a 2017 study, an estimated 34% of adults in the U.S. from 2007-2012 had MetS, defined as the presence of at least 3 of these factors – elevated waist circumference, elevated triglycerides, reduced high-density lipoprotein cholesterol, high blood pressure, and elevated fasting blood glucose (Prev Chronic Dis. 2017 Mar 16;14:E24).

MetS is linked to higher rates of a variety of ills, including cardiovascular disease, kidney disease, and early death.

For the new study, Dr. Hardy and colleagues examined data from the Atherosclerosis Risk in Communities study (1987-1998) and food questionnaires (1987 and 1993). There were 9,778 white participants and 2,922 African-American participants.

Subjects with diets higher in whole milk/high-fat dairy diets were significantly less likely to develop MetS per 5-unit increase at risk ratio (RR) =.96 (0.90-1.00), for whites and RR = .81 (0.72-0.90), for African-Americans.

But whites with skim milk/low-fat dairy diets had significantly higher risks of MetS per 5-unit increase at RR = 1.11 (1.06-1.17). There was also a higher risk for African-Americans but it was not statistically significant.

There was an even bigger bump in significant risk for those with diets higher in red and processed meat per 5-unit increase at RR = 1.17 (1.12-1.23), for whites and RR=1.16 (1.08-1.25), for African-Americans.

The researchers also found evidence that whole milk/high-fat dairy diets had an even greater protective effect in whites when genetic risk was present.

What’s going on? “Maybe the fat in the [dairy] foods is holding back glucose absorption and decreasing the risk for MetS over time,” Hardy said. “This fat is different from the animal fats from meats. Fat from dairy has a shorter molecular structure chain compared to the hard animal fats. Hard animal fats are more dangerous in terms of increasing the risk of type 2 diabetes and cardiovascular diseases.”

The dairy fat, Hardy said, could also be lowering insulin secretion.

So should everyone embrace whole milk and high-fat yogurt and cottage cheese? Hardy isn’t ready to offer this advice. “I don’t think that high-fat diary per se should be recommended as a miracle food to manage or prevent MetS,” she said. “I believe that the macronutrient composition of the meals and the day’s intake should be a more important feature of the diet. In addition, frequent exercise should be recommended to manage MetS.”

More analysis of the data is ongoing, Hardy said, and her team has found signs that diets higher in nuts and peanut butter are protective against MetS in whites.

The study was funded by the National Heart, Lung, and Blood Institute. The study authors had no relevant disclosures.

SOURCE: Hardy, D. et al. 2019 ADA annual meeting Abstract 1458-P.

SAN FRANCISCO – Here’s potential bad news for everyone who dines on skim milk and non-fat yogurt: High-fat dairy products may be better for you, at least if you want to stave off metabolic syndrome (MetS), according to a new study.

Jupiterimages/Getty Images

The findings aren’t conclusive. Still, researchers found that “among whites and African- Americans, the whole milk/high-fat dairy pattern had a protective effect on the risk of metabolic syndrome,” said epidemiologist and study lead author Dale Hardy, PhD, of Morehouse School of Medicine, in an interview. She presented the study findings at the scientific sessions of the American Diabetes Association.

Hardy launched her research as part of a project that’s examining relationships between diet, genes, type 2 diabetes, and cardiovascular diseases in whites and African-Americans.

According to a 2017 study, an estimated 34% of adults in the U.S. from 2007-2012 had MetS, defined as the presence of at least 3 of these factors – elevated waist circumference, elevated triglycerides, reduced high-density lipoprotein cholesterol, high blood pressure, and elevated fasting blood glucose (Prev Chronic Dis. 2017 Mar 16;14:E24).

MetS is linked to higher rates of a variety of ills, including cardiovascular disease, kidney disease, and early death.

For the new study, Dr. Hardy and colleagues examined data from the Atherosclerosis Risk in Communities study (1987-1998) and food questionnaires (1987 and 1993). There were 9,778 white participants and 2,922 African-American participants.

Subjects with diets higher in whole milk/high-fat dairy diets were significantly less likely to develop MetS per 5-unit increase at risk ratio (RR) =.96 (0.90-1.00), for whites and RR = .81 (0.72-0.90), for African-Americans.

But whites with skim milk/low-fat dairy diets had significantly higher risks of MetS per 5-unit increase at RR = 1.11 (1.06-1.17). There was also a higher risk for African-Americans but it was not statistically significant.

There was an even bigger bump in significant risk for those with diets higher in red and processed meat per 5-unit increase at RR = 1.17 (1.12-1.23), for whites and RR=1.16 (1.08-1.25), for African-Americans.

The researchers also found evidence that whole milk/high-fat dairy diets had an even greater protective effect in whites when genetic risk was present.

What’s going on? “Maybe the fat in the [dairy] foods is holding back glucose absorption and decreasing the risk for MetS over time,” Hardy said. “This fat is different from the animal fats from meats. Fat from dairy has a shorter molecular structure chain compared to the hard animal fats. Hard animal fats are more dangerous in terms of increasing the risk of type 2 diabetes and cardiovascular diseases.”

The dairy fat, Hardy said, could also be lowering insulin secretion.

So should everyone embrace whole milk and high-fat yogurt and cottage cheese? Hardy isn’t ready to offer this advice. “I don’t think that high-fat diary per se should be recommended as a miracle food to manage or prevent MetS,” she said. “I believe that the macronutrient composition of the meals and the day’s intake should be a more important feature of the diet. In addition, frequent exercise should be recommended to manage MetS.”

More analysis of the data is ongoing, Hardy said, and her team has found signs that diets higher in nuts and peanut butter are protective against MetS in whites.

The study was funded by the National Heart, Lung, and Blood Institute. The study authors had no relevant disclosures.

SOURCE: Hardy, D. et al. 2019 ADA annual meeting Abstract 1458-P.