This transcript has been edited for clarity.
Kathrin LaFaver, MD: Welcome to Medscape Neurology. I'm Dr Kathrin LaFaver, a neurologist and movement disorder specialist in Saratoga Springs, New York.
I have the pleasure today of speaking with Dr Indu Subramanian, who is the director of the Southwest Parkinson's Disease Research, Education, and Clinical Centers at the VA in sunny Los Angeles, California. We're here to talk about her exciting paper recently published in Movement Disorders, "Unmet Needs of Women Living with Parkinson's Disease: Gaps and Controversies," for which Dr Subramanian served as the first author.
Thank you for this important work. Can you first share why you pursued this topic?
Indu Subramanian, MD: The timeframe of this pandemic has really made us rethink who's not being served, and what's happening with mistrust in healthcare and the vaccine campaigns. I've really been thinking about things a little outside the box of regular practice. Since a lot of us have been remote and had time to learn from each other, we've been connecting — as you and I have as well — with a number of colleagues and thought leaders worldwide.
I ended up running a virtual support group with over a hundred interviews of thought leaders, including patient voices. We had a lot of momentum around the unmet needs of women. We interviewed a number of women, younger women and older women, during about five sessions and various panels.
I was really shocked to find out how little was known in this area and how much passion and interest there is in women trying to support each other through the pandemic and starting their own mutual support groups. Internationally, there's been a huge drive for outreach toward each other and support, and I was just so impressed with that. When women get together, many cool things happen. You know that too, as the person who founded the Women Neurologists Group. We really can band together sometimes.
After those interviews, we had a number of the women say that we needed to have a paper about this. And then it was a question of who was going to write. I felt strongly that it should have a voice of the women themselves. So I approached three of the women that we had interviewed: Soania Mathur, MD; Richelle Flanagan, RD; and Annelien Oosterbaan, MD, PhD. They are all very unique, amazing advocates themselves and a very international group. I also spoke to Elena Moro, MD, PhD, who had been on the series as well. She's an amazing force of nature. She just started the women's group at the Movement Disorder Society and is trying to do some really important advocacy work in the European nations as well.
We ended up proposing this to the Movement Disorders journal. They accepted, and we put together this gaps-and-controversies paper.
LaFaver: I want to point out how unique this group of authors is. You have six women, three who are movement disorder specialists and three physicians affected by Parkinson's disease themselves. Props for doing that. It also sounds like it organically grew from your advocacy work, which is wonderful.
What was your process in defining these gaps?
Subramanian: We looked at the existing literature, and there have been a number of papers out there. The Parkinson's Foundation had done some work identifying and categorizing some gaps. We asked the women themselves. They created a survey to find out what were the unmet needs, which they circulated to some of the women they were working with in support groups.
It really was a coming together and gathering a number of sources. We wanted to put a bit of a psychosocial spin on it, since we had women who were living with Parkinson's disease, who themselves are healthcare providers, as coauthors. So, rather than just focusing on something like the basic science of estrogen or hormonal treatments, it was really about what they thought needed to be represented.
It kind of just came about organically. We were brainstorming and writing things down, and then kind of teased out what is known. When you write these types of papers, you're supposed to write what is known and then figure out the gaps and controversies from there. And by doing that, you quickly realize that very little is known. So, it was very easy to review the previous work, because there isn't a lot and it's often conflicting data.
Then we thought about what needs to be done around a few major areas, including advocacy, research priorities, and then also obviously treatment and management of the women themselves.
The Possible Role of Hormones in Parkinson's
LaFaver: You mentioned the hormonal differences, which is something not everyone may know. Parkinson's does have a strong predilection for men, which might be one of the reasons there hasn't been as much research specifically done on women. What is biologically known about the differences?
Subramanian: I don't think we know a lot. For example, some of the ratios are a bit different in Asia, where the proportions of men to women are much more similar. We don't fully understand that yet.
There has been a sense that maybe estrogen is protective, and perhaps this is a way to help all patients with their progression. A lot of people have been doing this research, but there's a lot of controversy about whether to give estrogen, hormone replacement therapy, birth control pills. There's not a lot known. There hasn't been a lot of collaboration around this.
In speaking to some researchers, I was actually pretty shocked to find out it's much easier to do research on male mice because they don't have menses and things like that. Also, in some of the genetic studies (eg, genome-wide association studies), they actually take out the X chromosomes to try to simplify things. We're actually discounting a lot of information about 50% of the world's population — not just in Parkinson's disease, but in all diseases.
As we're thinking about how to meet people where they are, and how to be culturally contextual with our care, gender and sex are a huge piece of this. This is a very timely moment for this paper to come out.
And it's not just about women trying to fight for themselves, but rather about advancing the whole state of the disease for everyone living with this disease in the country and in the world. It's also about all of us as colleagues coming together, sitting at the table, and understanding how to do this better for everyone living with Parkinson's.
Tailoring Treatment to Stages of Life
LaFaver: There was a very useful table that you included in the paper showing the life cycle of a woman. There are people with young-onset Parkinson's who are in their reproductive years when they get diagnosed. As you mentioned before, there are gaps in knowledge around how menstrual cycles affect Parkinson's, how to counsel people who might be pregnant, and then throughout perimenopause there might be other considerations.
What would be some of the main takeaways for a movement disorder specialist to keep in mind?
Subramanian: I think the hormones can change how people are feeling. A lot of women have reported feeling worse the week before they have their menses. That's 1 in 4 weeks that they're feeling bad. Sometimes they feel an extra need for levodopa or extra self-care strategies. Some of the women said sometimes they might need a warm bath, extra yoga, or a nap here and there.
To come together and show this, graphically, allowed many women to feel heard and seen. It's been really exciting for the women because they've never seen this demonstrated in any sort of way before.
When we really think about how to approach this for clinicians out there, I think it's about listening to women, understanding whether their menstrual periods do affect their symptoms, and if there are certain times of the month that women may feel worse. And just as you would for a migraine patient, you might change the strategy a little bit in those timeframes when things are exacerbating. That's important.
The perimenopausal period, when women are going into pre-menopause and into menopause, is a very important timeframe too. A lot of women report that their Parkinson's symptoms started at that time or that they had motor exacerbation. So that's another time frame to think about and perhaps consider hormone replacement therapy.
I think pre-pregnancy counseling is absolutely important because there are some medicines that are not safe for women to be taking in their pregnancy. Actually, one of our co-authors is an ob/gyn who's really amazing, actually pregnant right now with her fourth child, is almost ready to deliver, and has Parkinson's. So that's a real consideration for her. She's been advocating for a possible international registry that can be started for women who are pregnant, and how we can help them through labor and beyond.
And as we know, many of the disease manifestations of Parkinson's are not just motor disorders. There's a huge nonmotor burden as well as a mental health burden. As we all know as women, hormonal changes can affect how we feel from mood perspectives as well. So it's important to think about this in addition to these other things that make our treatment of this disease challenging. But I do think this is something that's not been historically spoken about and it's so needed to be cared about.
Continuing the Dialogue
LaFaver: Thanks so much for bringing this to everyone's attention. As a final question, what would you advise for people in the movement disorders sphere who are interested in researching this or connecting with others? What would be the best way to go about that?
Subramanian: I think you can start by reading our paper and acknowledging these categories. I think it's a pretty easy read. Give it to your women with Parkinson's disease as well. I've been doing that to open up a dialogue. I think open communication is so important and it can actually help people to narrow down what the issues are when they see it written on paper. And I think, obviously, that advocacy, education, and empowerment are so key to building that trust and rapport with our patients.
Second, if you're a woman who's interested in some of this work, the Movement Disorder Society has just started this pretty cool special interest group run by Dr Moro and colleagues. The Women in Neurology group is always interested in this kind of thing as well, so join us in those things too.
But for all clinicians who are out there, whether they're male or female, I think personalized medicine and that almost bespoke care of the person who's sitting in front of you is really the way to go in 2022 and beyond. It requires thinking about the intersections of who is sitting in front of you and how this disease may affect them in their individual body, their individual symptoms, and their individual presentation.
And then there are the psychosocial aspects of so many of our patients that we have not really thought about before. For example, if you're a woman who's Black, your life experience is very, very different from that of a White, affluent male who has historically been the sort of focus of all of our research and most of our care. So, really think a little bit more open-mindedly about the populations that we're serving and hopefully we can come together.
I don't have all the solutions. This is just the start of more dialogue. But I think that by working together as a group of people who love this population and want to serve them better, we can hopefully consider unique strategies. Including the patient voices is part of the beauty of this paper. I hope that this does spark interest in including other patient voices for other disorders moving forward as well.
LaFaver: I think that was an excellent summary. Listen to your patients, get curious, and connect and really ask questions that are really pertaining to the person in front of you. Don't always check off a checklist.
Thank you so much for sharing these findings. I encourage everyone to read the paper in Movement Disorders, and thanks, everyone, for joining us today.
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Any views expressed above are the author's own and do not necessarily reflect the views of WebMD or Medscape.
Cite this: Kathrin LaFaver, Indu subramanian. What Neurology Misses in Treating Women With Parkinson's - Medscape - Mar 24, 2022.