Tackling Sexism in Medicine

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This interview was recorded Dec. 8, 2023. The transcript has been edited for clarity.

Kathrin LaFaver, MD: I have the pleasure of talking with Dr. Elizabeth Loder today. Dr. Loder is the vice chair of academic affairs in the department of neurology and a staff physician at Graham Headache Center at Brigham and Women’s Hospital in Boston. She’s also a professor of neurology at Harvard Medical School and has been a mentor to many headache specialists in the field.

We’ll be talking about the topic of sexism in medicine.

Elizabeth W. Loder, MD, MPH: Thank you so much, Dr. LaFaver. I’m very pleased to be here to talk about something that I think is very important.

Dr. LaFaver: Dr. Loder, you were a speaker at our Women in Neurology third annual conference in Florida, giving a talk on this very topic, sexism in medicine. It was very helpful, especially for many younger women entering the field of neurology, to hear that some of the experiences they’re having are not unique to them, but unfortunately remain a more systemic issue.

To get us started, could you define sexism in medicine for us, and how you got interested in this topic?
 

Sexism Can Be Subtle

Dr. Loder: You’re absolutely right. Sexism is still there. It might be a bit more subtle than it used to be at the beginning of my career, but it’s definitely still there. It’s nice for women, particularly those entering the field, to know that they’re not alone.

What is sexism? Well, it’s generally considered to be prejudice or discrimination against someone based on their sex or gender. One thing that’s important to remember is it’s not always extremely obvious. It’s not always intentional. I think most of us, I’d include myself in that, have sexist views. We may not always be aware of them. This is part of the unconscious bias that many of us have been trained to think.

As one example, we’re socialized — or I certainly was — to think of doctors as male. When a patient says, “I saw a cardiologist,” in my mind, I think that that person might have been male. Sometimes, I will ask, “What did he say?” That’s an example of sexism.

Sexism can be internalized. It can come from any source. We’re all implicated in it. I think that’s very important to remember. This is not a case of them doing something to us. This is something that is much more widespread and engendered in the society that we live in.

Dr. LaFaver: I think that’s really important to realize. Could you mention some other examples, specifically in the field of neurology, that you have encountered?

Dr. Loder: Certainly, looking over my own career — and I’m at a point now where I can look at early, mid, and late career — things were, of course, very different when I began. I would say that sexism was much more overt.

Very early in my career, I experienced a large amount of hostility from a boss. I ended up having to leave. This was, I believe, based on my sex. It turned out that leaving was a good thing for me, but it was a very unpleasant experience.

I also became a leader in my professional society. During my path to leadership and seeing other women attempt to make progress within the organization, I certainly saw behavior that I would characterize as rooted in sexism. To its credit, though, the professional society to which I belong, I think, has become one of the most progressive societies out there. The women within have been able to affect quite a bit of change in that professional organization.

I dealt with a case of sexual harassment in my own division when I was a division chief, which gave me insight into institutional policies and procedures meant to deal with situations like that, which, I think, leave something to be desired. That’s changing.

Now, I work in academic affairs, and I see how likely or unlikely people, based on their sex, are to put themselves forward for promotion, how likely they are to believe in their own capabilities. I also work as a medical journal editor, and I see generally that women are more hesitant to proclaim themselves experts and to accept invitations to provide or write editorial commentary. Sometimes, they do not perceive themselves as being expert enough to do so. I have seen many of these things over my career.

Dr. LaFaver: Thank you for sharing. I think it’s important to realize that it›s not just unidirectional but sometimes affects women and kind of goes both ways.

As you mentioned, these issues are not always overt. In recent years, microaggressions has become more of a term that has been used. Could you talk a bit about that? What are the microaggressions and how do they affect women?
 

 

 

Microaggressions and Migraine Mavens

Dr. Loder: The term microaggression has become very popular, and I think many people find it somewhat irritating. That, to me, is inherent in what a microaggression is. Microaggressions, by definition, are small things. It’s hard to prove that they were rooted in sexism. Sometimes, there’s a large amount of ambiguity about it. It can be as simple as inviting a pregnant woman to sit down because you perceive that she needs to sit, commenting on somebody’s shoes, or things like that.

Often, they’re unintentional. Sometimes, they come from a place of what we might term benevolent sexism, people trying to be helpful to a woman because they perceive that she’s weaker or she might not be able to do something, or maybe she has family responsibilities. They think that they’re being helpful. These things happen when we perceive people to be different in some way, as women are perceived to be different in terms of their responsibilities in the home or different in terms of what we expect from them in the workplace.

The problem with microaggressions is because they’re small, each one of them, I think the temptation is often to say, “Oh you know, they didn’t mean it. It’s not that big a deal. It was just a comment on your shoes.” If a woman brings that up, she’s often made to feel, sometimes by other women, that she should just chill out. This isn’t a big deal.

The problem is that they may not be a big deal in and of themselves, but when they are repeated over a long period of time, they can really sap somebody’s confidence in herself, make her question her own competence, and can have a cumulative effect that is very negative.

Although I think many people are skeptical about microaggressions as an important contribution to how women do in the workplace and in other settings, they are, in my opinion, important. I’ll just emphasize again that they come from everywhere, including other women and colleagues who mean to be helpful.

Dr. LaFaver: I know you have led a team of headache specialists and wrote a fantastic article about navigating sexism at work and what not to say to your female colleagues. Could you share some tips for them to navigate sexism at work and, specifically, as it applies to our careers in medicine.

Dr. Loder: Thank you for calling out that article. It actually grew organically out of a Facebook group that I started called Migraine Mavens. I’ve worked in the headache field throughout my career, and I experienced something that, to me, was kind of discouraging that I felt was sexist within our field. I just thought, What can I do? I thought, Well, maybe there’s some strength to be had in sharing this with other women, and maybe we should have our own social media community, so I formed this group.

After I gave a talk at the American Headache Society about sexism in the headache field, one of the members sent me a message saying, “Your talk was very timely. Immediately after you gave this talk, somebody stopped me in the hall and said, ‘Congratulations on your leadership position in the society, but are you really sure you can do this because you’ve got young children at home?’ Your talk was very needed.”

People started just discussing within the group, “Oh, this happened to me,” “That happened to me.” We began to brainstorm what we could have done differently. When these things happen, people are not necessarily prepared for them, and later on, you lie awake thinking of what you could have said.

We decided to write a paper. It ended up being published in The Journal of Head and Face Pain, and it was based on real vignettes from people in the group. We anonymized them so that people would not recognize themselves necessarily, but they’re all real. They’re things that really happened to women in the group.

We first describe the vignette — what happened. Then we explain, for those who need the explanation, what’s wrong with it. Why is it wrong to tell somebody to smile, for example. What could you do differently? What could somebody who sees this happen do, the so-called bystander or upstander? If you witness something like that, can you help the person toward whom this problematic behavior is directed? We came up with some examples. The all-purpose thing is to say, “What did you just say?” Make them repeat it, which often helps people to realize how inappropriate it is.

This got published as an article. It became quite the subject of attention on X [formerly Twitter] and elsewhere. I guess the term going viral would apply to this. It included a large amount of real-world advice. The thing I really loved about it was that it was written by the women in the group who had experienced these things. I would characterize it as having been somewhat therapeutic. We got many messages from women in other disciplines, outside medicine, saying that this happens in oceanography, for example. I think what we described really resonated beyond the field of headache medicine and neurology.
 

 

 

Institutional Sexism

Dr. LaFaver: Looking beyond the individual person, do you have any recommendations for medical institutions to share in order to do better and maybe create an environment that is less sexist?

Dr. Loder: Yes. I think many institutions try to deal with the problem of lack of diversity, whether it›s women or other underrepresented groups, by hiring. That’s one way to go about it, but I think retention strategies are also very important, and they need to pay attention to the work environment.

Every institution now has guidelines about harassment, bullying, sexism, racism, and so on. In general though — and I’m not speaking about any particular institution — these policies and procedures are often crafted with an eye toward protecting the institution. I would advise institutions to be a bit more genuine about this, and not to think so quickly about what can we do to prevent the institution from facing a charge of sexism, or what can we do to deny or dismiss these allegations, toward thinking, what can we do to really and truly be helpful to these women? In other words, approach it from the point of view of trying to help the people involved instead of trying to help the institution. That will make a very big difference.

I also think that citizenship activities, serving on committees, doing thankless tasks behind the scenes, and clinical work, seeing patients ... Women are overrepresented among clinicians. Of course, we know that research and bringing in big grants is often prioritized over clinical care, despite what institutions may say about that in public. I think those activities should be valued more highly, both in terms of pay and in terms of academic recognition.

In regard to the issue of salary, I would encourage institutions to publish salaries or at least make them easily findable by people within the institution. I think there should be objective criteria for salary determinations. The most important thing is that I do not think that women should be expected to negotiate their salaries. Women are judged differently than men when they attempt to negotiate salaries. It often backfires for them. It also is something that many women do not feel comfortable doing.

Waiting until somebody tries to negotiate a higher salary really guarantees, embeds, and operationalizes sex differences in salaries. We need to move away from the idea that you have to be a go-getter and that you have to ask for this raise. There should be objective criteria, salaries should be revisited on a regular basis, and the kinds of activities that women do that are undervalued should be more recognized in terms of money and advancement within academia.

Dr. LaFaver: I couldn’t agree more. One of the other topics discussed at the Women in Neurology conference was mid-career development, retention, and career paths. I think it’s known that many women leave academic medicine mid-career. I think these are excellent suggestions and hopefully will help to make careers successful for men and women, without needing to worry about being treated differently or unfairly.

Thank you so much. This was a wonderful overview of this topic.

Dr. Loder: You’re welcome, Dr. LaFaver. Thank you so much for asking me to speak on this topic. I really appreciate it.

Dr. LaFaver: Thanks, everyone.

 

Dr. LaFaver is a neurologist at Saratoga Hospital Medical Group, Saratoga Springs, New York. Dr. LaFaver and Dr. Loder disclosed no relevant financial relationships.

A version of this article appeared on Medscape.com.

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This interview was recorded Dec. 8, 2023. The transcript has been edited for clarity.

Kathrin LaFaver, MD: I have the pleasure of talking with Dr. Elizabeth Loder today. Dr. Loder is the vice chair of academic affairs in the department of neurology and a staff physician at Graham Headache Center at Brigham and Women’s Hospital in Boston. She’s also a professor of neurology at Harvard Medical School and has been a mentor to many headache specialists in the field.

We’ll be talking about the topic of sexism in medicine.

Elizabeth W. Loder, MD, MPH: Thank you so much, Dr. LaFaver. I’m very pleased to be here to talk about something that I think is very important.

Dr. LaFaver: Dr. Loder, you were a speaker at our Women in Neurology third annual conference in Florida, giving a talk on this very topic, sexism in medicine. It was very helpful, especially for many younger women entering the field of neurology, to hear that some of the experiences they’re having are not unique to them, but unfortunately remain a more systemic issue.

To get us started, could you define sexism in medicine for us, and how you got interested in this topic?
 

Sexism Can Be Subtle

Dr. Loder: You’re absolutely right. Sexism is still there. It might be a bit more subtle than it used to be at the beginning of my career, but it’s definitely still there. It’s nice for women, particularly those entering the field, to know that they’re not alone.

What is sexism? Well, it’s generally considered to be prejudice or discrimination against someone based on their sex or gender. One thing that’s important to remember is it’s not always extremely obvious. It’s not always intentional. I think most of us, I’d include myself in that, have sexist views. We may not always be aware of them. This is part of the unconscious bias that many of us have been trained to think.

As one example, we’re socialized — or I certainly was — to think of doctors as male. When a patient says, “I saw a cardiologist,” in my mind, I think that that person might have been male. Sometimes, I will ask, “What did he say?” That’s an example of sexism.

Sexism can be internalized. It can come from any source. We’re all implicated in it. I think that’s very important to remember. This is not a case of them doing something to us. This is something that is much more widespread and engendered in the society that we live in.

Dr. LaFaver: I think that’s really important to realize. Could you mention some other examples, specifically in the field of neurology, that you have encountered?

Dr. Loder: Certainly, looking over my own career — and I’m at a point now where I can look at early, mid, and late career — things were, of course, very different when I began. I would say that sexism was much more overt.

Very early in my career, I experienced a large amount of hostility from a boss. I ended up having to leave. This was, I believe, based on my sex. It turned out that leaving was a good thing for me, but it was a very unpleasant experience.

I also became a leader in my professional society. During my path to leadership and seeing other women attempt to make progress within the organization, I certainly saw behavior that I would characterize as rooted in sexism. To its credit, though, the professional society to which I belong, I think, has become one of the most progressive societies out there. The women within have been able to affect quite a bit of change in that professional organization.

I dealt with a case of sexual harassment in my own division when I was a division chief, which gave me insight into institutional policies and procedures meant to deal with situations like that, which, I think, leave something to be desired. That’s changing.

Now, I work in academic affairs, and I see how likely or unlikely people, based on their sex, are to put themselves forward for promotion, how likely they are to believe in their own capabilities. I also work as a medical journal editor, and I see generally that women are more hesitant to proclaim themselves experts and to accept invitations to provide or write editorial commentary. Sometimes, they do not perceive themselves as being expert enough to do so. I have seen many of these things over my career.

Dr. LaFaver: Thank you for sharing. I think it’s important to realize that it›s not just unidirectional but sometimes affects women and kind of goes both ways.

As you mentioned, these issues are not always overt. In recent years, microaggressions has become more of a term that has been used. Could you talk a bit about that? What are the microaggressions and how do they affect women?
 

 

 

Microaggressions and Migraine Mavens

Dr. Loder: The term microaggression has become very popular, and I think many people find it somewhat irritating. That, to me, is inherent in what a microaggression is. Microaggressions, by definition, are small things. It’s hard to prove that they were rooted in sexism. Sometimes, there’s a large amount of ambiguity about it. It can be as simple as inviting a pregnant woman to sit down because you perceive that she needs to sit, commenting on somebody’s shoes, or things like that.

Often, they’re unintentional. Sometimes, they come from a place of what we might term benevolent sexism, people trying to be helpful to a woman because they perceive that she’s weaker or she might not be able to do something, or maybe she has family responsibilities. They think that they’re being helpful. These things happen when we perceive people to be different in some way, as women are perceived to be different in terms of their responsibilities in the home or different in terms of what we expect from them in the workplace.

The problem with microaggressions is because they’re small, each one of them, I think the temptation is often to say, “Oh you know, they didn’t mean it. It’s not that big a deal. It was just a comment on your shoes.” If a woman brings that up, she’s often made to feel, sometimes by other women, that she should just chill out. This isn’t a big deal.

The problem is that they may not be a big deal in and of themselves, but when they are repeated over a long period of time, they can really sap somebody’s confidence in herself, make her question her own competence, and can have a cumulative effect that is very negative.

Although I think many people are skeptical about microaggressions as an important contribution to how women do in the workplace and in other settings, they are, in my opinion, important. I’ll just emphasize again that they come from everywhere, including other women and colleagues who mean to be helpful.

Dr. LaFaver: I know you have led a team of headache specialists and wrote a fantastic article about navigating sexism at work and what not to say to your female colleagues. Could you share some tips for them to navigate sexism at work and, specifically, as it applies to our careers in medicine.

Dr. Loder: Thank you for calling out that article. It actually grew organically out of a Facebook group that I started called Migraine Mavens. I’ve worked in the headache field throughout my career, and I experienced something that, to me, was kind of discouraging that I felt was sexist within our field. I just thought, What can I do? I thought, Well, maybe there’s some strength to be had in sharing this with other women, and maybe we should have our own social media community, so I formed this group.

After I gave a talk at the American Headache Society about sexism in the headache field, one of the members sent me a message saying, “Your talk was very timely. Immediately after you gave this talk, somebody stopped me in the hall and said, ‘Congratulations on your leadership position in the society, but are you really sure you can do this because you’ve got young children at home?’ Your talk was very needed.”

People started just discussing within the group, “Oh, this happened to me,” “That happened to me.” We began to brainstorm what we could have done differently. When these things happen, people are not necessarily prepared for them, and later on, you lie awake thinking of what you could have said.

We decided to write a paper. It ended up being published in The Journal of Head and Face Pain, and it was based on real vignettes from people in the group. We anonymized them so that people would not recognize themselves necessarily, but they’re all real. They’re things that really happened to women in the group.

We first describe the vignette — what happened. Then we explain, for those who need the explanation, what’s wrong with it. Why is it wrong to tell somebody to smile, for example. What could you do differently? What could somebody who sees this happen do, the so-called bystander or upstander? If you witness something like that, can you help the person toward whom this problematic behavior is directed? We came up with some examples. The all-purpose thing is to say, “What did you just say?” Make them repeat it, which often helps people to realize how inappropriate it is.

This got published as an article. It became quite the subject of attention on X [formerly Twitter] and elsewhere. I guess the term going viral would apply to this. It included a large amount of real-world advice. The thing I really loved about it was that it was written by the women in the group who had experienced these things. I would characterize it as having been somewhat therapeutic. We got many messages from women in other disciplines, outside medicine, saying that this happens in oceanography, for example. I think what we described really resonated beyond the field of headache medicine and neurology.
 

 

 

Institutional Sexism

Dr. LaFaver: Looking beyond the individual person, do you have any recommendations for medical institutions to share in order to do better and maybe create an environment that is less sexist?

Dr. Loder: Yes. I think many institutions try to deal with the problem of lack of diversity, whether it›s women or other underrepresented groups, by hiring. That’s one way to go about it, but I think retention strategies are also very important, and they need to pay attention to the work environment.

Every institution now has guidelines about harassment, bullying, sexism, racism, and so on. In general though — and I’m not speaking about any particular institution — these policies and procedures are often crafted with an eye toward protecting the institution. I would advise institutions to be a bit more genuine about this, and not to think so quickly about what can we do to prevent the institution from facing a charge of sexism, or what can we do to deny or dismiss these allegations, toward thinking, what can we do to really and truly be helpful to these women? In other words, approach it from the point of view of trying to help the people involved instead of trying to help the institution. That will make a very big difference.

I also think that citizenship activities, serving on committees, doing thankless tasks behind the scenes, and clinical work, seeing patients ... Women are overrepresented among clinicians. Of course, we know that research and bringing in big grants is often prioritized over clinical care, despite what institutions may say about that in public. I think those activities should be valued more highly, both in terms of pay and in terms of academic recognition.

In regard to the issue of salary, I would encourage institutions to publish salaries or at least make them easily findable by people within the institution. I think there should be objective criteria for salary determinations. The most important thing is that I do not think that women should be expected to negotiate their salaries. Women are judged differently than men when they attempt to negotiate salaries. It often backfires for them. It also is something that many women do not feel comfortable doing.

Waiting until somebody tries to negotiate a higher salary really guarantees, embeds, and operationalizes sex differences in salaries. We need to move away from the idea that you have to be a go-getter and that you have to ask for this raise. There should be objective criteria, salaries should be revisited on a regular basis, and the kinds of activities that women do that are undervalued should be more recognized in terms of money and advancement within academia.

Dr. LaFaver: I couldn’t agree more. One of the other topics discussed at the Women in Neurology conference was mid-career development, retention, and career paths. I think it’s known that many women leave academic medicine mid-career. I think these are excellent suggestions and hopefully will help to make careers successful for men and women, without needing to worry about being treated differently or unfairly.

Thank you so much. This was a wonderful overview of this topic.

Dr. Loder: You’re welcome, Dr. LaFaver. Thank you so much for asking me to speak on this topic. I really appreciate it.

Dr. LaFaver: Thanks, everyone.

 

Dr. LaFaver is a neurologist at Saratoga Hospital Medical Group, Saratoga Springs, New York. Dr. LaFaver and Dr. Loder disclosed no relevant financial relationships.

A version of this article appeared on Medscape.com.

This interview was recorded Dec. 8, 2023. The transcript has been edited for clarity.

Kathrin LaFaver, MD: I have the pleasure of talking with Dr. Elizabeth Loder today. Dr. Loder is the vice chair of academic affairs in the department of neurology and a staff physician at Graham Headache Center at Brigham and Women’s Hospital in Boston. She’s also a professor of neurology at Harvard Medical School and has been a mentor to many headache specialists in the field.

We’ll be talking about the topic of sexism in medicine.

Elizabeth W. Loder, MD, MPH: Thank you so much, Dr. LaFaver. I’m very pleased to be here to talk about something that I think is very important.

Dr. LaFaver: Dr. Loder, you were a speaker at our Women in Neurology third annual conference in Florida, giving a talk on this very topic, sexism in medicine. It was very helpful, especially for many younger women entering the field of neurology, to hear that some of the experiences they’re having are not unique to them, but unfortunately remain a more systemic issue.

To get us started, could you define sexism in medicine for us, and how you got interested in this topic?
 

Sexism Can Be Subtle

Dr. Loder: You’re absolutely right. Sexism is still there. It might be a bit more subtle than it used to be at the beginning of my career, but it’s definitely still there. It’s nice for women, particularly those entering the field, to know that they’re not alone.

What is sexism? Well, it’s generally considered to be prejudice or discrimination against someone based on their sex or gender. One thing that’s important to remember is it’s not always extremely obvious. It’s not always intentional. I think most of us, I’d include myself in that, have sexist views. We may not always be aware of them. This is part of the unconscious bias that many of us have been trained to think.

As one example, we’re socialized — or I certainly was — to think of doctors as male. When a patient says, “I saw a cardiologist,” in my mind, I think that that person might have been male. Sometimes, I will ask, “What did he say?” That’s an example of sexism.

Sexism can be internalized. It can come from any source. We’re all implicated in it. I think that’s very important to remember. This is not a case of them doing something to us. This is something that is much more widespread and engendered in the society that we live in.

Dr. LaFaver: I think that’s really important to realize. Could you mention some other examples, specifically in the field of neurology, that you have encountered?

Dr. Loder: Certainly, looking over my own career — and I’m at a point now where I can look at early, mid, and late career — things were, of course, very different when I began. I would say that sexism was much more overt.

Very early in my career, I experienced a large amount of hostility from a boss. I ended up having to leave. This was, I believe, based on my sex. It turned out that leaving was a good thing for me, but it was a very unpleasant experience.

I also became a leader in my professional society. During my path to leadership and seeing other women attempt to make progress within the organization, I certainly saw behavior that I would characterize as rooted in sexism. To its credit, though, the professional society to which I belong, I think, has become one of the most progressive societies out there. The women within have been able to affect quite a bit of change in that professional organization.

I dealt with a case of sexual harassment in my own division when I was a division chief, which gave me insight into institutional policies and procedures meant to deal with situations like that, which, I think, leave something to be desired. That’s changing.

Now, I work in academic affairs, and I see how likely or unlikely people, based on their sex, are to put themselves forward for promotion, how likely they are to believe in their own capabilities. I also work as a medical journal editor, and I see generally that women are more hesitant to proclaim themselves experts and to accept invitations to provide or write editorial commentary. Sometimes, they do not perceive themselves as being expert enough to do so. I have seen many of these things over my career.

Dr. LaFaver: Thank you for sharing. I think it’s important to realize that it›s not just unidirectional but sometimes affects women and kind of goes both ways.

As you mentioned, these issues are not always overt. In recent years, microaggressions has become more of a term that has been used. Could you talk a bit about that? What are the microaggressions and how do they affect women?
 

 

 

Microaggressions and Migraine Mavens

Dr. Loder: The term microaggression has become very popular, and I think many people find it somewhat irritating. That, to me, is inherent in what a microaggression is. Microaggressions, by definition, are small things. It’s hard to prove that they were rooted in sexism. Sometimes, there’s a large amount of ambiguity about it. It can be as simple as inviting a pregnant woman to sit down because you perceive that she needs to sit, commenting on somebody’s shoes, or things like that.

Often, they’re unintentional. Sometimes, they come from a place of what we might term benevolent sexism, people trying to be helpful to a woman because they perceive that she’s weaker or she might not be able to do something, or maybe she has family responsibilities. They think that they’re being helpful. These things happen when we perceive people to be different in some way, as women are perceived to be different in terms of their responsibilities in the home or different in terms of what we expect from them in the workplace.

The problem with microaggressions is because they’re small, each one of them, I think the temptation is often to say, “Oh you know, they didn’t mean it. It’s not that big a deal. It was just a comment on your shoes.” If a woman brings that up, she’s often made to feel, sometimes by other women, that she should just chill out. This isn’t a big deal.

The problem is that they may not be a big deal in and of themselves, but when they are repeated over a long period of time, they can really sap somebody’s confidence in herself, make her question her own competence, and can have a cumulative effect that is very negative.

Although I think many people are skeptical about microaggressions as an important contribution to how women do in the workplace and in other settings, they are, in my opinion, important. I’ll just emphasize again that they come from everywhere, including other women and colleagues who mean to be helpful.

Dr. LaFaver: I know you have led a team of headache specialists and wrote a fantastic article about navigating sexism at work and what not to say to your female colleagues. Could you share some tips for them to navigate sexism at work and, specifically, as it applies to our careers in medicine.

Dr. Loder: Thank you for calling out that article. It actually grew organically out of a Facebook group that I started called Migraine Mavens. I’ve worked in the headache field throughout my career, and I experienced something that, to me, was kind of discouraging that I felt was sexist within our field. I just thought, What can I do? I thought, Well, maybe there’s some strength to be had in sharing this with other women, and maybe we should have our own social media community, so I formed this group.

After I gave a talk at the American Headache Society about sexism in the headache field, one of the members sent me a message saying, “Your talk was very timely. Immediately after you gave this talk, somebody stopped me in the hall and said, ‘Congratulations on your leadership position in the society, but are you really sure you can do this because you’ve got young children at home?’ Your talk was very needed.”

People started just discussing within the group, “Oh, this happened to me,” “That happened to me.” We began to brainstorm what we could have done differently. When these things happen, people are not necessarily prepared for them, and later on, you lie awake thinking of what you could have said.

We decided to write a paper. It ended up being published in The Journal of Head and Face Pain, and it was based on real vignettes from people in the group. We anonymized them so that people would not recognize themselves necessarily, but they’re all real. They’re things that really happened to women in the group.

We first describe the vignette — what happened. Then we explain, for those who need the explanation, what’s wrong with it. Why is it wrong to tell somebody to smile, for example. What could you do differently? What could somebody who sees this happen do, the so-called bystander or upstander? If you witness something like that, can you help the person toward whom this problematic behavior is directed? We came up with some examples. The all-purpose thing is to say, “What did you just say?” Make them repeat it, which often helps people to realize how inappropriate it is.

This got published as an article. It became quite the subject of attention on X [formerly Twitter] and elsewhere. I guess the term going viral would apply to this. It included a large amount of real-world advice. The thing I really loved about it was that it was written by the women in the group who had experienced these things. I would characterize it as having been somewhat therapeutic. We got many messages from women in other disciplines, outside medicine, saying that this happens in oceanography, for example. I think what we described really resonated beyond the field of headache medicine and neurology.
 

 

 

Institutional Sexism

Dr. LaFaver: Looking beyond the individual person, do you have any recommendations for medical institutions to share in order to do better and maybe create an environment that is less sexist?

Dr. Loder: Yes. I think many institutions try to deal with the problem of lack of diversity, whether it›s women or other underrepresented groups, by hiring. That’s one way to go about it, but I think retention strategies are also very important, and they need to pay attention to the work environment.

Every institution now has guidelines about harassment, bullying, sexism, racism, and so on. In general though — and I’m not speaking about any particular institution — these policies and procedures are often crafted with an eye toward protecting the institution. I would advise institutions to be a bit more genuine about this, and not to think so quickly about what can we do to prevent the institution from facing a charge of sexism, or what can we do to deny or dismiss these allegations, toward thinking, what can we do to really and truly be helpful to these women? In other words, approach it from the point of view of trying to help the people involved instead of trying to help the institution. That will make a very big difference.

I also think that citizenship activities, serving on committees, doing thankless tasks behind the scenes, and clinical work, seeing patients ... Women are overrepresented among clinicians. Of course, we know that research and bringing in big grants is often prioritized over clinical care, despite what institutions may say about that in public. I think those activities should be valued more highly, both in terms of pay and in terms of academic recognition.

In regard to the issue of salary, I would encourage institutions to publish salaries or at least make them easily findable by people within the institution. I think there should be objective criteria for salary determinations. The most important thing is that I do not think that women should be expected to negotiate their salaries. Women are judged differently than men when they attempt to negotiate salaries. It often backfires for them. It also is something that many women do not feel comfortable doing.

Waiting until somebody tries to negotiate a higher salary really guarantees, embeds, and operationalizes sex differences in salaries. We need to move away from the idea that you have to be a go-getter and that you have to ask for this raise. There should be objective criteria, salaries should be revisited on a regular basis, and the kinds of activities that women do that are undervalued should be more recognized in terms of money and advancement within academia.

Dr. LaFaver: I couldn’t agree more. One of the other topics discussed at the Women in Neurology conference was mid-career development, retention, and career paths. I think it’s known that many women leave academic medicine mid-career. I think these are excellent suggestions and hopefully will help to make careers successful for men and women, without needing to worry about being treated differently or unfairly.

Thank you so much. This was a wonderful overview of this topic.

Dr. Loder: You’re welcome, Dr. LaFaver. Thank you so much for asking me to speak on this topic. I really appreciate it.

Dr. LaFaver: Thanks, everyone.

 

Dr. LaFaver is a neurologist at Saratoga Hospital Medical Group, Saratoga Springs, New York. Dr. LaFaver and Dr. Loder disclosed no relevant financial relationships.

A version of this article appeared on Medscape.com.

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What to tell your patients about anti-amyloids for Alzheimer’s disease

Article Type
Changed
Tue, 11/21/2023 - 14:48

Recorded October 13, 2023. This transcript has been edited for clarity.

Kathrin LaFaver, MD: I’ll be talking today with Dr. Meredith Wicklund, senior associate consultant and behavioral neurologist specialist at Mayo Clinic in Arizona. Welcome, Meredith.

Meredith Wicklund, MD: Thank you.
 

Lecanemab data

Dr. LaFaver: I’m very excited about our topic. We’ll be talking about monoclonal antibody therapy against amyloid in Alzheimer’s disease – which has really been a hot topic, especially this year with the FDA approval of lecanemab – and associated questions. Could you give us a brief overview of why there has been so much research interest in this topic of anti-amyloid antibodies?

Dr. Wicklund: The pathologic component of what defines something as Alzheimer’s disease is, by definition, presence of amyloid plaques and tau tangles. When it was first discovered in the 1980s that the component of the plaques was actually the amyloid protein – beta amyloid specifically – interest went right from there to developing therapies to directly target the pathology that is Alzheimer’s disease.

Dr. LaFaver: Lecanemab is the first FDA-approved disease-modifying antibody in that realm. Could you review the study data, especially as it applies to both of us in daily neurology clinic?

Dr. Wicklund: The study data from a phase 3 trial did show, for the primary outcome, that there was a 27% slowing of decline compared with individuals on placebo. It’s important to point out that this was slowing of decline. It was not stabilizing decline. It was not improving decline.

I think it’s important that we inform our patients that really, even with this therapy, there’s no prospect of stabilizing or restoring cognition or function. We do progress at a slower rate compared with individuals not on this treatment, which, given that this medication is for individuals in mild disease who have relatively preserved functional status, that can be potentially very meaningful to families.

The overall benefit was small. It essentially amounts to half a point on an 18-point scale, which is statistically significant. How much clinical meaningfulness that actually leads to is unclear. Finding clinical meaningfulness cannot be defined by a particular test. It really can only be defined on the individual level, what is meaningful to them.
 

Recommended tests

Dr. LaFaver: It is my understanding that, to qualify for lecanemab use, one needs to have a biomarker-supported diagnosis of Alzheimer’s disease, either via an amyloid PET scan or CSF biomarkers. What would your recommendation be for a neurologist in practice to go about these requirements?

Dr. Wicklund: Since this medication is directly targeting the amyloid pathology, and it does convey a potential risk, we want to make sure that the actual pathology is present in the individuals before we treat them and potentially expose them to risk. The best way of doing that is through either an amyloid PET scan or spinal fluid testing of beta amyloid and tau.

There are several plasma-based biomarkers in development. However, I would avoid using those currently. There are still many unknowns in terms of what exactly is the right species of tau that we should be looking at, the right mechanism of the lab test, how minority status may influence it, and how different comorbidities may influence it.

I would recommend, at this time, sticking with amyloid PET or CSF testing. Given that amyloid PET is not widely available in many community practices, generally only available at academic centers, and is quite costly, many insurances do not cover it – although Medicare has a proposal to potentially start covering it – I generally go with spinal fluid testing, which is more widely available. There are several labs across the country that can process that testing in a reliable way.
 

 

 

Amyloid-related imaging abnormalities

Dr. LaFaver: That’s very helpful to know. There’s been a large amount of buzz just these past couple of weeks about the blood biomarker coming up. I think, as you point out, this wasn’t the marker used in the clinical studies and there are still unknowns. Maybe it’s not quite time for clinical use, unfortunately.

We also have learned that there are significant potential risks involved. One issue that’s really been a focus is ARIA – amyloid-related imaging abnormalities. Could you speak a bit about that and requirements for monitoring?

Dr. Wicklund: ARIA essentially amounts to either vasogenic edema, microhemorrhages, or superficial siderosis that develops as a result of treatment. It relates to activation of the immune system with these passive monoclonal antibodies that’s going to occur with targeting against the plaques. In the parenchyma, it will cause edema. If you have amyloid in the walls of the blood vessels, it can cause microhemorrhages.

While the term “ARIA” implies an imaging-related abnormality, and it largely is purely an imaging finding, it’s not solely an imaging-related finding. It can cause symptoms, including very serious symptoms.

Overall, with lecanemab, the incidence of ARIA within the treatment group in the phase 3 study, combined between both ARIA-E (edema/effusion) and ARIA-H (hemorrhage), was 21.5%, with about 17% being ARIA-H and about 12.5% being ARIA-E. Of course, they can occur at the same time.

Overall, in terms of people in the clinical trials, for most it was purely an imaging-related finding. About 3% developed symptomatic ARIA. Some of those were very serious symptoms, including things like seizures and need to be hospitalized. A couple of deaths have been attributed to ARIA as well.

Patients on anticoagulation

Dr. LaFaver: Along those lines, any additional words to say for people who might be on anticoagulation or might require medications for a stroke, for example?

Dr. Wicklund: While individuals on anticoagulation were allowed in the clinical trials, the current, published appropriate-use guideline is recommending against its use, as several of the serious adverse effects, including the deaths, were for the most part attributed to anticoagulation use.

When it comes to acute stroke treatment, one must carefully consider use of tPA, as two of the three deaths were tPA associated in the clinical trials. It shouldn’t necessarily be an absolute contraindication, but it can make the clinical picture very muddy. If an individual is on lecanemab and comes to the ER with acute stroke-like symptoms, it’s more likely that they’re going to be having an ARIA side effect rather than an acute stroke.

A general recommendation would be to obtain an acute head CT with a CTA, and if there is a large vessel occlusion, proceed to thrombectomy. However, if there isn’t a large vessel occlusion, if you have the ability to get a rapid MRI with diffusion-weighted imaging to screen for acute stroke changes or tissue flair with acute edema changes suggestive of ARIA, that would be preferred before proceeding with thrombolysis. These are all relative contraindications and are going to depend on what’s available near you.
 

 

 

Donanemab approval pending

Dr. LaFaver: This will be an issue because the population we’re talking about is definitely at risk for stroke as well as Alzheimer’s disease. Where do you see this field going as far as amyloid antibody therapy is concerned, with another agent, donanemab, possibly getting FDA approval later this year as well?

Dr. Wicklund: We’re anticipating that donanemab will get FDA approval in the next coming months. Donanemab also targets the amyloid in the brain, although lecanemab and donanemab target different aspects of the production of the amyloid plaque. They were both shown to have roughly equal efficacy in their phase 3 clinical trials. Donanemab has the benefit of being a once-monthly infusion as opposed to twice-monthly infusions with lecanemab. It does have a slightly higher risk for ARIA compared with lecanemab.

Those are just some things to take into consideration when talking with your patients. In terms of where we’re going from here, we’re moving even earlier in terms of disease state. The lecanemab and donanemab phase 3 trials were done in individuals with mild cognitive impairment or mild dementia due to Alzheimer’s disease. They should not be used in individuals with moderate or more advanced Alzheimer’s disease.

There are ongoing, large, national, multicenter clinical trials of both lecanemab and donanemab in a preclinical state of Alzheimer’s disease. These individuals have evidence of amyloidosis, either through PET imaging or through CSF, but are clinically asymptomatic and do not yet have any signs of cognitive impairment or functional decline. We look forward to those results in the next few years. Hopefully, they’ll be able to show even greater benefit when moving into these early disease states in terms of delaying or even preventing cognitive decline.

Dr. LaFaver: That’s definitely very interesting to hear about. Where can people go for more information?

Dr. Wicklund: There’s a guideline on the use of lecanemab through the American Academy of Neurology. I encourage you to look at that. Also, look at the appropriate-use recommendations that were published this year in The Journal of Prevention of Alzheimer’s Disease.

Dr. LaFaver: Wonderful. With that being said, thank you so much for talking to me. I learned a lot. Thanks, everyone, for listening.
 

Dr. LaFaver is a neurologist at Saratoga Hospital Medical Group, Saratoga Springs, N.Y. She disclosed having no relevant financial relationships. Dr. Wicklund is senior associate consultant in the department of Neurology at Mayo Clinic, Phoenix, Ariz. She disclosed having no relevant financial relationships.

A version of this article appeared on Medscape.com.

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Recorded October 13, 2023. This transcript has been edited for clarity.

Kathrin LaFaver, MD: I’ll be talking today with Dr. Meredith Wicklund, senior associate consultant and behavioral neurologist specialist at Mayo Clinic in Arizona. Welcome, Meredith.

Meredith Wicklund, MD: Thank you.
 

Lecanemab data

Dr. LaFaver: I’m very excited about our topic. We’ll be talking about monoclonal antibody therapy against amyloid in Alzheimer’s disease – which has really been a hot topic, especially this year with the FDA approval of lecanemab – and associated questions. Could you give us a brief overview of why there has been so much research interest in this topic of anti-amyloid antibodies?

Dr. Wicklund: The pathologic component of what defines something as Alzheimer’s disease is, by definition, presence of amyloid plaques and tau tangles. When it was first discovered in the 1980s that the component of the plaques was actually the amyloid protein – beta amyloid specifically – interest went right from there to developing therapies to directly target the pathology that is Alzheimer’s disease.

Dr. LaFaver: Lecanemab is the first FDA-approved disease-modifying antibody in that realm. Could you review the study data, especially as it applies to both of us in daily neurology clinic?

Dr. Wicklund: The study data from a phase 3 trial did show, for the primary outcome, that there was a 27% slowing of decline compared with individuals on placebo. It’s important to point out that this was slowing of decline. It was not stabilizing decline. It was not improving decline.

I think it’s important that we inform our patients that really, even with this therapy, there’s no prospect of stabilizing or restoring cognition or function. We do progress at a slower rate compared with individuals not on this treatment, which, given that this medication is for individuals in mild disease who have relatively preserved functional status, that can be potentially very meaningful to families.

The overall benefit was small. It essentially amounts to half a point on an 18-point scale, which is statistically significant. How much clinical meaningfulness that actually leads to is unclear. Finding clinical meaningfulness cannot be defined by a particular test. It really can only be defined on the individual level, what is meaningful to them.
 

Recommended tests

Dr. LaFaver: It is my understanding that, to qualify for lecanemab use, one needs to have a biomarker-supported diagnosis of Alzheimer’s disease, either via an amyloid PET scan or CSF biomarkers. What would your recommendation be for a neurologist in practice to go about these requirements?

Dr. Wicklund: Since this medication is directly targeting the amyloid pathology, and it does convey a potential risk, we want to make sure that the actual pathology is present in the individuals before we treat them and potentially expose them to risk. The best way of doing that is through either an amyloid PET scan or spinal fluid testing of beta amyloid and tau.

There are several plasma-based biomarkers in development. However, I would avoid using those currently. There are still many unknowns in terms of what exactly is the right species of tau that we should be looking at, the right mechanism of the lab test, how minority status may influence it, and how different comorbidities may influence it.

I would recommend, at this time, sticking with amyloid PET or CSF testing. Given that amyloid PET is not widely available in many community practices, generally only available at academic centers, and is quite costly, many insurances do not cover it – although Medicare has a proposal to potentially start covering it – I generally go with spinal fluid testing, which is more widely available. There are several labs across the country that can process that testing in a reliable way.
 

 

 

Amyloid-related imaging abnormalities

Dr. LaFaver: That’s very helpful to know. There’s been a large amount of buzz just these past couple of weeks about the blood biomarker coming up. I think, as you point out, this wasn’t the marker used in the clinical studies and there are still unknowns. Maybe it’s not quite time for clinical use, unfortunately.

We also have learned that there are significant potential risks involved. One issue that’s really been a focus is ARIA – amyloid-related imaging abnormalities. Could you speak a bit about that and requirements for monitoring?

Dr. Wicklund: ARIA essentially amounts to either vasogenic edema, microhemorrhages, or superficial siderosis that develops as a result of treatment. It relates to activation of the immune system with these passive monoclonal antibodies that’s going to occur with targeting against the plaques. In the parenchyma, it will cause edema. If you have amyloid in the walls of the blood vessels, it can cause microhemorrhages.

While the term “ARIA” implies an imaging-related abnormality, and it largely is purely an imaging finding, it’s not solely an imaging-related finding. It can cause symptoms, including very serious symptoms.

Overall, with lecanemab, the incidence of ARIA within the treatment group in the phase 3 study, combined between both ARIA-E (edema/effusion) and ARIA-H (hemorrhage), was 21.5%, with about 17% being ARIA-H and about 12.5% being ARIA-E. Of course, they can occur at the same time.

Overall, in terms of people in the clinical trials, for most it was purely an imaging-related finding. About 3% developed symptomatic ARIA. Some of those were very serious symptoms, including things like seizures and need to be hospitalized. A couple of deaths have been attributed to ARIA as well.

Patients on anticoagulation

Dr. LaFaver: Along those lines, any additional words to say for people who might be on anticoagulation or might require medications for a stroke, for example?

Dr. Wicklund: While individuals on anticoagulation were allowed in the clinical trials, the current, published appropriate-use guideline is recommending against its use, as several of the serious adverse effects, including the deaths, were for the most part attributed to anticoagulation use.

When it comes to acute stroke treatment, one must carefully consider use of tPA, as two of the three deaths were tPA associated in the clinical trials. It shouldn’t necessarily be an absolute contraindication, but it can make the clinical picture very muddy. If an individual is on lecanemab and comes to the ER with acute stroke-like symptoms, it’s more likely that they’re going to be having an ARIA side effect rather than an acute stroke.

A general recommendation would be to obtain an acute head CT with a CTA, and if there is a large vessel occlusion, proceed to thrombectomy. However, if there isn’t a large vessel occlusion, if you have the ability to get a rapid MRI with diffusion-weighted imaging to screen for acute stroke changes or tissue flair with acute edema changes suggestive of ARIA, that would be preferred before proceeding with thrombolysis. These are all relative contraindications and are going to depend on what’s available near you.
 

 

 

Donanemab approval pending

Dr. LaFaver: This will be an issue because the population we’re talking about is definitely at risk for stroke as well as Alzheimer’s disease. Where do you see this field going as far as amyloid antibody therapy is concerned, with another agent, donanemab, possibly getting FDA approval later this year as well?

Dr. Wicklund: We’re anticipating that donanemab will get FDA approval in the next coming months. Donanemab also targets the amyloid in the brain, although lecanemab and donanemab target different aspects of the production of the amyloid plaque. They were both shown to have roughly equal efficacy in their phase 3 clinical trials. Donanemab has the benefit of being a once-monthly infusion as opposed to twice-monthly infusions with lecanemab. It does have a slightly higher risk for ARIA compared with lecanemab.

Those are just some things to take into consideration when talking with your patients. In terms of where we’re going from here, we’re moving even earlier in terms of disease state. The lecanemab and donanemab phase 3 trials were done in individuals with mild cognitive impairment or mild dementia due to Alzheimer’s disease. They should not be used in individuals with moderate or more advanced Alzheimer’s disease.

There are ongoing, large, national, multicenter clinical trials of both lecanemab and donanemab in a preclinical state of Alzheimer’s disease. These individuals have evidence of amyloidosis, either through PET imaging or through CSF, but are clinically asymptomatic and do not yet have any signs of cognitive impairment or functional decline. We look forward to those results in the next few years. Hopefully, they’ll be able to show even greater benefit when moving into these early disease states in terms of delaying or even preventing cognitive decline.

Dr. LaFaver: That’s definitely very interesting to hear about. Where can people go for more information?

Dr. Wicklund: There’s a guideline on the use of lecanemab through the American Academy of Neurology. I encourage you to look at that. Also, look at the appropriate-use recommendations that were published this year in The Journal of Prevention of Alzheimer’s Disease.

Dr. LaFaver: Wonderful. With that being said, thank you so much for talking to me. I learned a lot. Thanks, everyone, for listening.
 

Dr. LaFaver is a neurologist at Saratoga Hospital Medical Group, Saratoga Springs, N.Y. She disclosed having no relevant financial relationships. Dr. Wicklund is senior associate consultant in the department of Neurology at Mayo Clinic, Phoenix, Ariz. She disclosed having no relevant financial relationships.

A version of this article appeared on Medscape.com.

Recorded October 13, 2023. This transcript has been edited for clarity.

Kathrin LaFaver, MD: I’ll be talking today with Dr. Meredith Wicklund, senior associate consultant and behavioral neurologist specialist at Mayo Clinic in Arizona. Welcome, Meredith.

Meredith Wicklund, MD: Thank you.
 

Lecanemab data

Dr. LaFaver: I’m very excited about our topic. We’ll be talking about monoclonal antibody therapy against amyloid in Alzheimer’s disease – which has really been a hot topic, especially this year with the FDA approval of lecanemab – and associated questions. Could you give us a brief overview of why there has been so much research interest in this topic of anti-amyloid antibodies?

Dr. Wicklund: The pathologic component of what defines something as Alzheimer’s disease is, by definition, presence of amyloid plaques and tau tangles. When it was first discovered in the 1980s that the component of the plaques was actually the amyloid protein – beta amyloid specifically – interest went right from there to developing therapies to directly target the pathology that is Alzheimer’s disease.

Dr. LaFaver: Lecanemab is the first FDA-approved disease-modifying antibody in that realm. Could you review the study data, especially as it applies to both of us in daily neurology clinic?

Dr. Wicklund: The study data from a phase 3 trial did show, for the primary outcome, that there was a 27% slowing of decline compared with individuals on placebo. It’s important to point out that this was slowing of decline. It was not stabilizing decline. It was not improving decline.

I think it’s important that we inform our patients that really, even with this therapy, there’s no prospect of stabilizing or restoring cognition or function. We do progress at a slower rate compared with individuals not on this treatment, which, given that this medication is for individuals in mild disease who have relatively preserved functional status, that can be potentially very meaningful to families.

The overall benefit was small. It essentially amounts to half a point on an 18-point scale, which is statistically significant. How much clinical meaningfulness that actually leads to is unclear. Finding clinical meaningfulness cannot be defined by a particular test. It really can only be defined on the individual level, what is meaningful to them.
 

Recommended tests

Dr. LaFaver: It is my understanding that, to qualify for lecanemab use, one needs to have a biomarker-supported diagnosis of Alzheimer’s disease, either via an amyloid PET scan or CSF biomarkers. What would your recommendation be for a neurologist in practice to go about these requirements?

Dr. Wicklund: Since this medication is directly targeting the amyloid pathology, and it does convey a potential risk, we want to make sure that the actual pathology is present in the individuals before we treat them and potentially expose them to risk. The best way of doing that is through either an amyloid PET scan or spinal fluid testing of beta amyloid and tau.

There are several plasma-based biomarkers in development. However, I would avoid using those currently. There are still many unknowns in terms of what exactly is the right species of tau that we should be looking at, the right mechanism of the lab test, how minority status may influence it, and how different comorbidities may influence it.

I would recommend, at this time, sticking with amyloid PET or CSF testing. Given that amyloid PET is not widely available in many community practices, generally only available at academic centers, and is quite costly, many insurances do not cover it – although Medicare has a proposal to potentially start covering it – I generally go with spinal fluid testing, which is more widely available. There are several labs across the country that can process that testing in a reliable way.
 

 

 

Amyloid-related imaging abnormalities

Dr. LaFaver: That’s very helpful to know. There’s been a large amount of buzz just these past couple of weeks about the blood biomarker coming up. I think, as you point out, this wasn’t the marker used in the clinical studies and there are still unknowns. Maybe it’s not quite time for clinical use, unfortunately.

We also have learned that there are significant potential risks involved. One issue that’s really been a focus is ARIA – amyloid-related imaging abnormalities. Could you speak a bit about that and requirements for monitoring?

Dr. Wicklund: ARIA essentially amounts to either vasogenic edema, microhemorrhages, or superficial siderosis that develops as a result of treatment. It relates to activation of the immune system with these passive monoclonal antibodies that’s going to occur with targeting against the plaques. In the parenchyma, it will cause edema. If you have amyloid in the walls of the blood vessels, it can cause microhemorrhages.

While the term “ARIA” implies an imaging-related abnormality, and it largely is purely an imaging finding, it’s not solely an imaging-related finding. It can cause symptoms, including very serious symptoms.

Overall, with lecanemab, the incidence of ARIA within the treatment group in the phase 3 study, combined between both ARIA-E (edema/effusion) and ARIA-H (hemorrhage), was 21.5%, with about 17% being ARIA-H and about 12.5% being ARIA-E. Of course, they can occur at the same time.

Overall, in terms of people in the clinical trials, for most it was purely an imaging-related finding. About 3% developed symptomatic ARIA. Some of those were very serious symptoms, including things like seizures and need to be hospitalized. A couple of deaths have been attributed to ARIA as well.

Patients on anticoagulation

Dr. LaFaver: Along those lines, any additional words to say for people who might be on anticoagulation or might require medications for a stroke, for example?

Dr. Wicklund: While individuals on anticoagulation were allowed in the clinical trials, the current, published appropriate-use guideline is recommending against its use, as several of the serious adverse effects, including the deaths, were for the most part attributed to anticoagulation use.

When it comes to acute stroke treatment, one must carefully consider use of tPA, as two of the three deaths were tPA associated in the clinical trials. It shouldn’t necessarily be an absolute contraindication, but it can make the clinical picture very muddy. If an individual is on lecanemab and comes to the ER with acute stroke-like symptoms, it’s more likely that they’re going to be having an ARIA side effect rather than an acute stroke.

A general recommendation would be to obtain an acute head CT with a CTA, and if there is a large vessel occlusion, proceed to thrombectomy. However, if there isn’t a large vessel occlusion, if you have the ability to get a rapid MRI with diffusion-weighted imaging to screen for acute stroke changes or tissue flair with acute edema changes suggestive of ARIA, that would be preferred before proceeding with thrombolysis. These are all relative contraindications and are going to depend on what’s available near you.
 

 

 

Donanemab approval pending

Dr. LaFaver: This will be an issue because the population we’re talking about is definitely at risk for stroke as well as Alzheimer’s disease. Where do you see this field going as far as amyloid antibody therapy is concerned, with another agent, donanemab, possibly getting FDA approval later this year as well?

Dr. Wicklund: We’re anticipating that donanemab will get FDA approval in the next coming months. Donanemab also targets the amyloid in the brain, although lecanemab and donanemab target different aspects of the production of the amyloid plaque. They were both shown to have roughly equal efficacy in their phase 3 clinical trials. Donanemab has the benefit of being a once-monthly infusion as opposed to twice-monthly infusions with lecanemab. It does have a slightly higher risk for ARIA compared with lecanemab.

Those are just some things to take into consideration when talking with your patients. In terms of where we’re going from here, we’re moving even earlier in terms of disease state. The lecanemab and donanemab phase 3 trials were done in individuals with mild cognitive impairment or mild dementia due to Alzheimer’s disease. They should not be used in individuals with moderate or more advanced Alzheimer’s disease.

There are ongoing, large, national, multicenter clinical trials of both lecanemab and donanemab in a preclinical state of Alzheimer’s disease. These individuals have evidence of amyloidosis, either through PET imaging or through CSF, but are clinically asymptomatic and do not yet have any signs of cognitive impairment or functional decline. We look forward to those results in the next few years. Hopefully, they’ll be able to show even greater benefit when moving into these early disease states in terms of delaying or even preventing cognitive decline.

Dr. LaFaver: That’s definitely very interesting to hear about. Where can people go for more information?

Dr. Wicklund: There’s a guideline on the use of lecanemab through the American Academy of Neurology. I encourage you to look at that. Also, look at the appropriate-use recommendations that were published this year in The Journal of Prevention of Alzheimer’s Disease.

Dr. LaFaver: Wonderful. With that being said, thank you so much for talking to me. I learned a lot. Thanks, everyone, for listening.
 

Dr. LaFaver is a neurologist at Saratoga Hospital Medical Group, Saratoga Springs, N.Y. She disclosed having no relevant financial relationships. Dr. Wicklund is senior associate consultant in the department of Neurology at Mayo Clinic, Phoenix, Ariz. She disclosed having no relevant financial relationships.

A version of this article appeared on Medscape.com.

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Wed, 04/05/2023 - 10:08

 

This transcript has been edited for clarity.

Kathrin LaFaver, MD: Hello. I’m happy to talk today to Dr. Indu Subramanian, clinical professor at University of California, Los Angeles, and director of the Parkinson’s Disease Research, Education and Clinical Center in Los Angeles. I am a neurologist in Saratoga Springs, New York, and we will be talking today about Indu’s new paper on childhood trauma and Parkinson’s disease. Welcome and thanks for taking the time.

Indu Subramanian, MD: Thank you so much for letting us highlight this important topic.

Dr. LaFaver: There are many papers published every month on Parkinson’s disease, but this topic stands out because it’s not a thing that has been commonly looked at. What gave you the idea to study this?
 

Neurology behind other specialties

Dr. Subramanian: Kathrin, you and I have been looking at things that can inform us about our patients – the person who’s standing in front of us when they come in and we’re giving them this diagnosis. I think that so much of what we’ve done [in the past] is a cookie cutter approach to giving everybody the standard treatment. [We’ve been assuming that] It doesn’t matter if they’re a man or woman. It doesn’t matter if they’re a veteran. It doesn’t matter if they may be from a minoritized population.

Customization is so key, and we’re realizing that we have missed the boat often through the pandemic and in health care in general.

We’ve also been interested in approaches that are outside the box, right? We have this integrative medicine and lifestyle medicine background. I’ve been going to those meetings and really been struck by the mounting evidence on the importance of things like early adverse childhood events (ACEs), what zip code you live in, what your pollution index is, and how these things can affect people through their life and their health.

I think that it is high time neurologists pay attention to this. There’s been mounting evidence throughout many disease states, various types of cancers, and mental health. Cardiology is much more advanced, but we haven’t had much data in neurology. In fact, when we went to write this paper, there were just one or two papers that were looking at multiple sclerosis or general neurologic issues, but really nothing in Parkinson’s disease.

We know that Parkinson’s disease is not only a motor disease that affects mental health, but that it also affects nonmotor issues. Childhood adversity may affect how people progress or how quickly they may get a disease, and we were interested in how it may manifest in a disease like Parkinson’s disease.

That was the framework going to meetings. As we wrote this paper and were in various editing stages, there was a beautiful paper that came out by Nadine Burke Harris and team that really was a call to action for neurologists and caring about trauma.

Dr. LaFaver: I couldn’t agree more. It’s really an underrecognized issue. With my own background, being very interested in functional movement disorders, psychosomatic disorders, and so on, it becomes much more evident how common a trauma background is, not only for people we were traditionally asking about.

Why don’t you summarize your findings for us?
 

 

 

Adverse childhood events

Dr. Subramanian: This is a web-based survey, so obviously, these are patient self-reports of their disease. We have a large cohort of people that we’ve been following over 7 years. I’m looking at modifiable variables and what really impacts Parkinson’s disease. Some of our previous papers have looked at diet, exercise, and loneliness. This is the same cohort.

We ended up putting the ACEs questionnaire, which is 10 questions looking at whether you were exposed to certain things in your household below the age of 18. This is a relatively standard questionnaire that’s administered one time, and you get a score out of 10. This is something that has been pushed, at least in the state of California, as something that we should be checking more in all people coming in.

We introduced the survey, and we didn’t force everyone to take it. Unfortunately, there was 20% or so of our patients who chose not to answer these questions. One has to ask, who are those people that didn’t answer the questions? Are they the ones that may have had trauma and these questions were triggering? It was a gap. We didn’t add extra questions to explore why people didn’t answer those questions.

We have to also put this in context. We have a patient population that’s largely quite affluent, who are able to access web-based surveys through their computer, and largely Caucasian; there are not many minoritized populations in our cohort. We want to do better with that. We actually were able to gather a decent number of women. We represent women quite well in our survey. I think that’s because of this online approach and some of the things that we’re studying.

In our survey, we broke it down into people who had no ACEs, one to three ACEs, or four or more ACEs. This is a standard way to break down ACEs so that we’re able to categorize what to do with these patient populations.

What we saw – and it’s preliminary evidence – is that people who had higher ACE scores seemed to have more symptom severity when we controlled for things like years since diagnosis, age, and gender. They also seem to have a worse quality of life. There was some indication that there were more nonmotor issues in those populations, as you might expect, such as anxiety, depression, and things that presumably ACEs can affect separately.

There are some confounders, but I think we really want to use this as the first piece of evidence to hopefully pave the way for caring about trauma in Parkinson’s disease moving forward.

Dr. LaFaver: Thank you so much for that summary. You already mentioned the main methodology you used.

What is the next step for you? How do you see these findings informing our clinical care? Do you have suggestions for all of the neurologists listening in this regard?


 

PD not yet considered ACE-related

Dr. Subramanian: Dr. Burke Harris was the former surgeon general in California. She’s a woman of color and a brilliant speaker, and she had worked in inner cities, I think in San Francisco, with pediatric populations, seeing these effects of adversity in that time frame.

 

 

You see this population at risk, and then you’re following this cohort, which we knew from the Kaiser cohort determines earlier morbidity and mortality across a number of disease states. We’re seeing things like more heart attacks, more diabetes, and all kinds of things in these populations. This is not new news; we just have not been focusing on this.

In her paper, this call to action, they had talked about some ACE-related conditions that currently do not include Parkinson’s disease. There are three ACE-related neurologic conditions that people should be aware of. One is in the headache/pain universe. Another is in the stroke universe, and that’s understandable, given cardiovascular risk factors . Then the third is in this dementia risk category. I think Parkinson’s disease, as we know, can be associated with dementia. A large percentage of our patients get dementia, but we don’t have Parkinson’s disease called out in this framework.

What people are talking about is if you have no ACEs or are in this middle category of one to three ACEs and you don’t have an ACE-related diagnosis – which Parkinson’s disease is not currently – we just give some basic counseling about the importance of lifestyle. I think we would love to see that anyway. They’re talking about things like exercise, diet, sleep, social connection, getting out in nature, things like that, so just general counseling on the importance of that.

Then if you’re in this higher-risk category, and so with these ACE-related neurologic conditions, including dementia, headache, and stroke, if you had this middle range of one to three ACEs, they’re getting additional resources. Some of them may be referred for social work help or mental health support and things like that.

I’d really love to see that happening in Parkinson’s disease, because I think we have so many needs in our population. I’m always hoping to advocate for more mental health needs that are scarce and resources in the social support realm because I believe that social connection and social support is a huge buffer for this trauma.

ACEs are just one type of trauma. I take care of veterans in the Veterans [Affairs Department]. We have some information now coming out about posttraumatic stress disorder, predisposing to certain things in Parkinson’s disease, possibly head injury, and things like that. I think we have populations at risk that we can hopefully screen at intake, and I’m really pushing for that.

Maybe it’s not the neurologist that does this intake. It might be someone else on the team that can spend some time doing these questionnaires and understand if your patient has a high ACE score. Unless you ask, many patients don’t necessarily come forward to talk about this. I really am pushing for trying to screen and trying to advocate for more research in this area so that we can classify Parkinson’s disease as an ACE-related condition and thus give more resources from the mental health world, and also the social support world, to our patients.

Dr. LaFaver: Thank you. There are many important points, and I think it’s a very important thing to recognize that it may not be only trauma in childhood but also throughout life, as you said, and might really influence nonmotor symptoms of Parkinson’s disease in particular, including anxiety and pain, which are often difficult to treat.

I think there’s much more to do in research, advocacy, and education. We’re going to educate patients about this, and also educate other neurologists and providers. I think you mentioned that trauma-informed care is getting its spotlight in primary care and other specialties. I think we have catching up to do in neurology, and I think this is a really important work toward that goal.

Thank you so much for your work and for taking the time to share your thoughts. I hope to talk to you again soon.

Dr. Subramanian: Thank you so much, Kathrin.
 

Dr. LaFaver has disclosed no relevant financial relationships. Dr. Subramanian disclosed ties with Acorda Therapeutics.

A version of this article originally appeared on Medscape.com.

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This transcript has been edited for clarity.

Kathrin LaFaver, MD: Hello. I’m happy to talk today to Dr. Indu Subramanian, clinical professor at University of California, Los Angeles, and director of the Parkinson’s Disease Research, Education and Clinical Center in Los Angeles. I am a neurologist in Saratoga Springs, New York, and we will be talking today about Indu’s new paper on childhood trauma and Parkinson’s disease. Welcome and thanks for taking the time.

Indu Subramanian, MD: Thank you so much for letting us highlight this important topic.

Dr. LaFaver: There are many papers published every month on Parkinson’s disease, but this topic stands out because it’s not a thing that has been commonly looked at. What gave you the idea to study this?
 

Neurology behind other specialties

Dr. Subramanian: Kathrin, you and I have been looking at things that can inform us about our patients – the person who’s standing in front of us when they come in and we’re giving them this diagnosis. I think that so much of what we’ve done [in the past] is a cookie cutter approach to giving everybody the standard treatment. [We’ve been assuming that] It doesn’t matter if they’re a man or woman. It doesn’t matter if they’re a veteran. It doesn’t matter if they may be from a minoritized population.

Customization is so key, and we’re realizing that we have missed the boat often through the pandemic and in health care in general.

We’ve also been interested in approaches that are outside the box, right? We have this integrative medicine and lifestyle medicine background. I’ve been going to those meetings and really been struck by the mounting evidence on the importance of things like early adverse childhood events (ACEs), what zip code you live in, what your pollution index is, and how these things can affect people through their life and their health.

I think that it is high time neurologists pay attention to this. There’s been mounting evidence throughout many disease states, various types of cancers, and mental health. Cardiology is much more advanced, but we haven’t had much data in neurology. In fact, when we went to write this paper, there were just one or two papers that were looking at multiple sclerosis or general neurologic issues, but really nothing in Parkinson’s disease.

We know that Parkinson’s disease is not only a motor disease that affects mental health, but that it also affects nonmotor issues. Childhood adversity may affect how people progress or how quickly they may get a disease, and we were interested in how it may manifest in a disease like Parkinson’s disease.

That was the framework going to meetings. As we wrote this paper and were in various editing stages, there was a beautiful paper that came out by Nadine Burke Harris and team that really was a call to action for neurologists and caring about trauma.

Dr. LaFaver: I couldn’t agree more. It’s really an underrecognized issue. With my own background, being very interested in functional movement disorders, psychosomatic disorders, and so on, it becomes much more evident how common a trauma background is, not only for people we were traditionally asking about.

Why don’t you summarize your findings for us?
 

 

 

Adverse childhood events

Dr. Subramanian: This is a web-based survey, so obviously, these are patient self-reports of their disease. We have a large cohort of people that we’ve been following over 7 years. I’m looking at modifiable variables and what really impacts Parkinson’s disease. Some of our previous papers have looked at diet, exercise, and loneliness. This is the same cohort.

We ended up putting the ACEs questionnaire, which is 10 questions looking at whether you were exposed to certain things in your household below the age of 18. This is a relatively standard questionnaire that’s administered one time, and you get a score out of 10. This is something that has been pushed, at least in the state of California, as something that we should be checking more in all people coming in.

We introduced the survey, and we didn’t force everyone to take it. Unfortunately, there was 20% or so of our patients who chose not to answer these questions. One has to ask, who are those people that didn’t answer the questions? Are they the ones that may have had trauma and these questions were triggering? It was a gap. We didn’t add extra questions to explore why people didn’t answer those questions.

We have to also put this in context. We have a patient population that’s largely quite affluent, who are able to access web-based surveys through their computer, and largely Caucasian; there are not many minoritized populations in our cohort. We want to do better with that. We actually were able to gather a decent number of women. We represent women quite well in our survey. I think that’s because of this online approach and some of the things that we’re studying.

In our survey, we broke it down into people who had no ACEs, one to three ACEs, or four or more ACEs. This is a standard way to break down ACEs so that we’re able to categorize what to do with these patient populations.

What we saw – and it’s preliminary evidence – is that people who had higher ACE scores seemed to have more symptom severity when we controlled for things like years since diagnosis, age, and gender. They also seem to have a worse quality of life. There was some indication that there were more nonmotor issues in those populations, as you might expect, such as anxiety, depression, and things that presumably ACEs can affect separately.

There are some confounders, but I think we really want to use this as the first piece of evidence to hopefully pave the way for caring about trauma in Parkinson’s disease moving forward.

Dr. LaFaver: Thank you so much for that summary. You already mentioned the main methodology you used.

What is the next step for you? How do you see these findings informing our clinical care? Do you have suggestions for all of the neurologists listening in this regard?


 

PD not yet considered ACE-related

Dr. Subramanian: Dr. Burke Harris was the former surgeon general in California. She’s a woman of color and a brilliant speaker, and she had worked in inner cities, I think in San Francisco, with pediatric populations, seeing these effects of adversity in that time frame.

 

 

You see this population at risk, and then you’re following this cohort, which we knew from the Kaiser cohort determines earlier morbidity and mortality across a number of disease states. We’re seeing things like more heart attacks, more diabetes, and all kinds of things in these populations. This is not new news; we just have not been focusing on this.

In her paper, this call to action, they had talked about some ACE-related conditions that currently do not include Parkinson’s disease. There are three ACE-related neurologic conditions that people should be aware of. One is in the headache/pain universe. Another is in the stroke universe, and that’s understandable, given cardiovascular risk factors . Then the third is in this dementia risk category. I think Parkinson’s disease, as we know, can be associated with dementia. A large percentage of our patients get dementia, but we don’t have Parkinson’s disease called out in this framework.

What people are talking about is if you have no ACEs or are in this middle category of one to three ACEs and you don’t have an ACE-related diagnosis – which Parkinson’s disease is not currently – we just give some basic counseling about the importance of lifestyle. I think we would love to see that anyway. They’re talking about things like exercise, diet, sleep, social connection, getting out in nature, things like that, so just general counseling on the importance of that.

Then if you’re in this higher-risk category, and so with these ACE-related neurologic conditions, including dementia, headache, and stroke, if you had this middle range of one to three ACEs, they’re getting additional resources. Some of them may be referred for social work help or mental health support and things like that.

I’d really love to see that happening in Parkinson’s disease, because I think we have so many needs in our population. I’m always hoping to advocate for more mental health needs that are scarce and resources in the social support realm because I believe that social connection and social support is a huge buffer for this trauma.

ACEs are just one type of trauma. I take care of veterans in the Veterans [Affairs Department]. We have some information now coming out about posttraumatic stress disorder, predisposing to certain things in Parkinson’s disease, possibly head injury, and things like that. I think we have populations at risk that we can hopefully screen at intake, and I’m really pushing for that.

Maybe it’s not the neurologist that does this intake. It might be someone else on the team that can spend some time doing these questionnaires and understand if your patient has a high ACE score. Unless you ask, many patients don’t necessarily come forward to talk about this. I really am pushing for trying to screen and trying to advocate for more research in this area so that we can classify Parkinson’s disease as an ACE-related condition and thus give more resources from the mental health world, and also the social support world, to our patients.

Dr. LaFaver: Thank you. There are many important points, and I think it’s a very important thing to recognize that it may not be only trauma in childhood but also throughout life, as you said, and might really influence nonmotor symptoms of Parkinson’s disease in particular, including anxiety and pain, which are often difficult to treat.

I think there’s much more to do in research, advocacy, and education. We’re going to educate patients about this, and also educate other neurologists and providers. I think you mentioned that trauma-informed care is getting its spotlight in primary care and other specialties. I think we have catching up to do in neurology, and I think this is a really important work toward that goal.

Thank you so much for your work and for taking the time to share your thoughts. I hope to talk to you again soon.

Dr. Subramanian: Thank you so much, Kathrin.
 

Dr. LaFaver has disclosed no relevant financial relationships. Dr. Subramanian disclosed ties with Acorda Therapeutics.

A version of this article originally appeared on Medscape.com.

 

This transcript has been edited for clarity.

Kathrin LaFaver, MD: Hello. I’m happy to talk today to Dr. Indu Subramanian, clinical professor at University of California, Los Angeles, and director of the Parkinson’s Disease Research, Education and Clinical Center in Los Angeles. I am a neurologist in Saratoga Springs, New York, and we will be talking today about Indu’s new paper on childhood trauma and Parkinson’s disease. Welcome and thanks for taking the time.

Indu Subramanian, MD: Thank you so much for letting us highlight this important topic.

Dr. LaFaver: There are many papers published every month on Parkinson’s disease, but this topic stands out because it’s not a thing that has been commonly looked at. What gave you the idea to study this?
 

Neurology behind other specialties

Dr. Subramanian: Kathrin, you and I have been looking at things that can inform us about our patients – the person who’s standing in front of us when they come in and we’re giving them this diagnosis. I think that so much of what we’ve done [in the past] is a cookie cutter approach to giving everybody the standard treatment. [We’ve been assuming that] It doesn’t matter if they’re a man or woman. It doesn’t matter if they’re a veteran. It doesn’t matter if they may be from a minoritized population.

Customization is so key, and we’re realizing that we have missed the boat often through the pandemic and in health care in general.

We’ve also been interested in approaches that are outside the box, right? We have this integrative medicine and lifestyle medicine background. I’ve been going to those meetings and really been struck by the mounting evidence on the importance of things like early adverse childhood events (ACEs), what zip code you live in, what your pollution index is, and how these things can affect people through their life and their health.

I think that it is high time neurologists pay attention to this. There’s been mounting evidence throughout many disease states, various types of cancers, and mental health. Cardiology is much more advanced, but we haven’t had much data in neurology. In fact, when we went to write this paper, there were just one or two papers that were looking at multiple sclerosis or general neurologic issues, but really nothing in Parkinson’s disease.

We know that Parkinson’s disease is not only a motor disease that affects mental health, but that it also affects nonmotor issues. Childhood adversity may affect how people progress or how quickly they may get a disease, and we were interested in how it may manifest in a disease like Parkinson’s disease.

That was the framework going to meetings. As we wrote this paper and were in various editing stages, there was a beautiful paper that came out by Nadine Burke Harris and team that really was a call to action for neurologists and caring about trauma.

Dr. LaFaver: I couldn’t agree more. It’s really an underrecognized issue. With my own background, being very interested in functional movement disorders, psychosomatic disorders, and so on, it becomes much more evident how common a trauma background is, not only for people we were traditionally asking about.

Why don’t you summarize your findings for us?
 

 

 

Adverse childhood events

Dr. Subramanian: This is a web-based survey, so obviously, these are patient self-reports of their disease. We have a large cohort of people that we’ve been following over 7 years. I’m looking at modifiable variables and what really impacts Parkinson’s disease. Some of our previous papers have looked at diet, exercise, and loneliness. This is the same cohort.

We ended up putting the ACEs questionnaire, which is 10 questions looking at whether you were exposed to certain things in your household below the age of 18. This is a relatively standard questionnaire that’s administered one time, and you get a score out of 10. This is something that has been pushed, at least in the state of California, as something that we should be checking more in all people coming in.

We introduced the survey, and we didn’t force everyone to take it. Unfortunately, there was 20% or so of our patients who chose not to answer these questions. One has to ask, who are those people that didn’t answer the questions? Are they the ones that may have had trauma and these questions were triggering? It was a gap. We didn’t add extra questions to explore why people didn’t answer those questions.

We have to also put this in context. We have a patient population that’s largely quite affluent, who are able to access web-based surveys through their computer, and largely Caucasian; there are not many minoritized populations in our cohort. We want to do better with that. We actually were able to gather a decent number of women. We represent women quite well in our survey. I think that’s because of this online approach and some of the things that we’re studying.

In our survey, we broke it down into people who had no ACEs, one to three ACEs, or four or more ACEs. This is a standard way to break down ACEs so that we’re able to categorize what to do with these patient populations.

What we saw – and it’s preliminary evidence – is that people who had higher ACE scores seemed to have more symptom severity when we controlled for things like years since diagnosis, age, and gender. They also seem to have a worse quality of life. There was some indication that there were more nonmotor issues in those populations, as you might expect, such as anxiety, depression, and things that presumably ACEs can affect separately.

There are some confounders, but I think we really want to use this as the first piece of evidence to hopefully pave the way for caring about trauma in Parkinson’s disease moving forward.

Dr. LaFaver: Thank you so much for that summary. You already mentioned the main methodology you used.

What is the next step for you? How do you see these findings informing our clinical care? Do you have suggestions for all of the neurologists listening in this regard?


 

PD not yet considered ACE-related

Dr. Subramanian: Dr. Burke Harris was the former surgeon general in California. She’s a woman of color and a brilliant speaker, and she had worked in inner cities, I think in San Francisco, with pediatric populations, seeing these effects of adversity in that time frame.

 

 

You see this population at risk, and then you’re following this cohort, which we knew from the Kaiser cohort determines earlier morbidity and mortality across a number of disease states. We’re seeing things like more heart attacks, more diabetes, and all kinds of things in these populations. This is not new news; we just have not been focusing on this.

In her paper, this call to action, they had talked about some ACE-related conditions that currently do not include Parkinson’s disease. There are three ACE-related neurologic conditions that people should be aware of. One is in the headache/pain universe. Another is in the stroke universe, and that’s understandable, given cardiovascular risk factors . Then the third is in this dementia risk category. I think Parkinson’s disease, as we know, can be associated with dementia. A large percentage of our patients get dementia, but we don’t have Parkinson’s disease called out in this framework.

What people are talking about is if you have no ACEs or are in this middle category of one to three ACEs and you don’t have an ACE-related diagnosis – which Parkinson’s disease is not currently – we just give some basic counseling about the importance of lifestyle. I think we would love to see that anyway. They’re talking about things like exercise, diet, sleep, social connection, getting out in nature, things like that, so just general counseling on the importance of that.

Then if you’re in this higher-risk category, and so with these ACE-related neurologic conditions, including dementia, headache, and stroke, if you had this middle range of one to three ACEs, they’re getting additional resources. Some of them may be referred for social work help or mental health support and things like that.

I’d really love to see that happening in Parkinson’s disease, because I think we have so many needs in our population. I’m always hoping to advocate for more mental health needs that are scarce and resources in the social support realm because I believe that social connection and social support is a huge buffer for this trauma.

ACEs are just one type of trauma. I take care of veterans in the Veterans [Affairs Department]. We have some information now coming out about posttraumatic stress disorder, predisposing to certain things in Parkinson’s disease, possibly head injury, and things like that. I think we have populations at risk that we can hopefully screen at intake, and I’m really pushing for that.

Maybe it’s not the neurologist that does this intake. It might be someone else on the team that can spend some time doing these questionnaires and understand if your patient has a high ACE score. Unless you ask, many patients don’t necessarily come forward to talk about this. I really am pushing for trying to screen and trying to advocate for more research in this area so that we can classify Parkinson’s disease as an ACE-related condition and thus give more resources from the mental health world, and also the social support world, to our patients.

Dr. LaFaver: Thank you. There are many important points, and I think it’s a very important thing to recognize that it may not be only trauma in childhood but also throughout life, as you said, and might really influence nonmotor symptoms of Parkinson’s disease in particular, including anxiety and pain, which are often difficult to treat.

I think there’s much more to do in research, advocacy, and education. We’re going to educate patients about this, and also educate other neurologists and providers. I think you mentioned that trauma-informed care is getting its spotlight in primary care and other specialties. I think we have catching up to do in neurology, and I think this is a really important work toward that goal.

Thank you so much for your work and for taking the time to share your thoughts. I hope to talk to you again soon.

Dr. Subramanian: Thank you so much, Kathrin.
 

Dr. LaFaver has disclosed no relevant financial relationships. Dr. Subramanian disclosed ties with Acorda Therapeutics.

A version of this article originally appeared on Medscape.com.

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