Support concerns lead women with Parkinson’s to shun DBS: Study
Caregiving responsibilities hold many back from opting for procedure
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- Women with Parkinson's are less likely to undergo deep brain stimulation (DBS) than men.
- Lack of reliable support and fear of burdening loved ones are key reasons women avoid DBS.
- It's important to address gender-specific needs and include more women in Parkinson's research.
Women with Parkinson’s disease are far less likely than men to undergo deep brain stimulation (DBS), in part because they are less likely to have reliable support and more likely to worry about being a burden on their loved ones.
That’s according to the study, “How Women and Men with Parkinson’s Disease Approach Decision-Making for Deep Brain Stimulation Surgery,” published in Movement Disorders Clinical Practice.
“Women tend to be caregivers in our society and may be less able to step away from that role,” Michelle Fullard, MD, the study’s first author and an assistant professor at the University of Colorado Anschutz School of Medicine, said in a university news story. “Or they may be worried about what the surgical risk could do to that role. When women have a chronic illness, they’re more likely to be divorced and have less social support, so they don’t have someone to come to their appointments or help them after surgery.”
DBS is a surgical treatment in which an electrode is implanted into the brain to deliver gentle electrical stimulation to specific brain regions. This can help to normalize electrical activity in the brain, easing Parkinson’s symptoms.
Previous studies have shown that the vast majority of patients who opt to undergo DBS are men. Women account for 23% to 30% of DBS recipients, the researchers noted. Parkinson’s is a bit more common in men than women, but this difference doesn’t explain the dramatic divergence in use of this particular type of therapy.
‘We’re not studying women’
Seeking to better understand how men and women with Parkinson’s approach decisions about DBS, Fullard and colleagues conducted interviews with 33 patients — 16 women and 17 men — who were undergoing, or had completed within the previous three years, evaluation for DBS at the University of Colorado.
They found that, in many respects, men and women approach the decision about DBS in similar ways. For instance, irrespective of gender, patients tended to turn to similar types of sources to get information about the surgery, with both men and women expressing a desire to talk with other people who have had DBS.
But there were a few key differences. While men were usually able to find other men who had undergone the surgery, women often faced challenges.
“We heard from so many women that they wanted to talk to another woman and hear about their experience, but they couldn’t find them,” Fullard said.
Other gender-based differences were found in terms of “information needs, motivations to undergo surgery, support needs and concerns, and how participants weighed risks and benefits,” the scientists wrote.
For instance, women tended to feel less supported as they went through the process of considering DBS.
When participants were asked if they were concerned about the support they would need around the time of DBS, “almost all of the men said, ‘No – my wife does that,’” Fullard said. “But many of the women described needing to do much more coordination, asking friends to stay or having family fly in.”
Most of the men were married and living with a spouse, and they usually reported that their spouses were a source of consistent support and help. As one man put it: “I have no concerns. I’m married, my wife is good with that.”
This type of support was valuable both during the time they were researching and learning about DBS, as well as when they were actually undergoing or recovering from surgery.
By contrast, most of the women in the study lived alone, and they generally reported having to call in favors to navigate the logistics of the DBS procedure. But even women who lived with spouses or other family members were more likely than men to worry about coordinating support and overburdening their loved ones, the team noted.
These gender-based differences “underscore the need to consider individual information needs, values, preferences, and support when discussing DBS as a treatment option,” the researchers wrote.
Based on patient feedback, they created a free online tool to help patients weigh the pros and cons of this surgical treatment.
The study’s findings highlight the importance of considering gender-specific experiences when doing research about Parkinson’s. This is important to consider given that most participants in studies on this disease are men, Fullard noted.
“We call women ‘atypical’ because they don’t fit the male presentation,” she said. “But that’s because we’re not studying women … We’re not going to know how therapies work or what the trajectory looks like in women if we don’t get women involved.”
“The future of Parkinson’s care depends on us being able to consider gender differences and rethink how we design trials and research studies to make sure that women can participate,” Fullard said.
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