Leading the first national effort to address long-standing gender disparities in Parkinson’s (PD) research and care, the Parkinson’s Foundation has developed patient-centered recommendations to promote the needs women in the U.S. living with the disease.
Drawn from the foundation’s two-year Women and PD Teams to Advance Learning and Knowledge (Women and PD Talk) project, the recommendations identify research and healthcare priorities voiced by women, while suggesting ways researchers might better address them. They are outlined in the report “Women and Parkinson’s: Closing the Gender Gap in Research and Care.”
Suggestions focus on research, care, and education and empowerment, and, under each topic, priority areas. Identified by women with PD, medical professionals and care teams, these priorities range from greater representation of women in Parkinson’s research, to more accessible care and patient self-management.
The overall purpose of the suggestions — known as the first research and care agenda in the U.S. specific to women — is to promote research and care practices that enable women with Parkinson’s to maximize their quality of life. They’re intended for use by researchers, medical professionals, funding agencies, and patients and their care teams.
“We really want to make sure that women are front and center in care, and that means working with societal structures to make sure women are prioritizing care,” Megan Feeney, the foundation’s spokesperson for Women and PD Talk, said in a phone interview with Parkinson’s News Today.
Parkinson’s affects roughly 1 million men and women in the United States and more than 10 million globally, with male patients outnumbering females by 3 to 2, Feeney said. The disease’s lower rate among women is not fully understood, as disease risk is due to multiple factors, including biology, environmental exposures and behavior, the report said. But this risk does increase with age, and women on average live longer than men.
At the crux of the project is the fact that, historically, Parkinson’s care has been based on studies that have focused mostly on men, or have not considered gender differences, the foundation said.
For instance, women can react differently to therapies and are more likely to receive lower-quality care, like poorer access to neurologists and other specialists, according to the report’s executive summary. They can also experience the disease differently. Women can have relatively more non-motor symptoms, such as cognitive and psychological issues that disproportionately affect their quality of life, then do men. Women also report more changes in their symptoms throughout the day, and compared with men, are more likely to be single or widowed.
“While the risk of developing PD is reduced in women, those diagnosed with the disease can encounter greater hurdles in obtaining an accurate diagnosis, experience more non-motor symptoms, face greater treatment-related dyskinesias, and may be less likely to see medical specialists than men with PD,” the publication said.
Funded for 2017–19 through a $250,000 Patient-Centered Outcomes Research Institute grant, Women and PD Talk is an outgrowth of the foundation’s umbrella Women and PD Initiative, which aims to ensure the health and well-being of female patients.
Over the past two years, the foundation and female stakeholders across the community hosted 10 regional forums — the final one in June — to educate and to understand the experiences of women with PD. Attendees included healthcare professionals, government representatives, and care partners.
During breakout sessions, these women — a total of 242 patients and 178 stakeholders — helped identify priorities and possible solutions. The national forum in Houston brought together 15 regional team leaders and 36 stakeholders to turn the real-world insights into an action plan for PD care.
“We asked people at the national forum to further prioritize, and to decide what researchers should focus on,” Feeney said. “That led to the agenda.”
Below are agenda topics, and a brief review of their priority areas and recommendations:
1. Inclusiveness: Parkinson’s cannot be fully understood without greater representation of women in PD research, including studies of disease mechanisms, progression, and treatment response. More focus on recruiting female patients, reflecting a representative sample by demographics and disease stages, is crucial.
2. Relevance: Parkinson’s research must be relevant to women, and be designed around their unique needs. Research must include topics examining the effects of biological sex, including sex hormones, as they relate to PD risk, progression, and treatment response. Research must also examine the qualitative impact of PD on women. Additional study is needed to better understand the differences between aging, menopause, and Parkinson’s.
3. Quality: Existing data should be pooled and analyzed for information about women with PD. Further research findings should be required to be analyzed in consideration of sex/gender.
4. Accessibility: Parkinson’s care must be accessible to women. Programs should target health, wellness and PD management, and should help women feel comfortable and included.
5. Personalization: Parkinson’s care should be personalized to women. Biological and gender/cultural differences influence PD health outcomes, and programs should be designed to address these differences.
6. Communication: Medical professionals and women with Parkinson’s should utilize shared decision-making tools to better communicate, and work together to identify treatment goals. Medical professionals should improve communication within the medical community to appropriately connect women with PD to available comprehensive services.
Education and Empowerment
7. Self management: Provide women early in their diagnosis with the knowledge and tools needed to maintain a desired quality of life. Tools should assist them with maintaining their personal and professional relationships while managing their disease.
8. Shared responsibility: Care teams should better understand the needs and priorities of women with PD, be more involved, and not depend on a patient understanding of all aspects of her disease. Women also need access to peer-to-peer services created for women only.
9. Advocacy: Additional education efforts are necessary to increase public awareness about PD. Advocacy is needed to minimize the disparities women with PD experience. Additional attention to resources for women with PD should be a public policy issue.
Efforts don’t end there, Feeney said. The idea is to continue to build momentum with ongoing collaboration.
After all, women’s health outcomes are not solely dependent on medical care, genetics or biology, an initiative publication states. Societal norms, health behaviors, places of residence, and support structures are among factors that interact to influence their experiences.
“This is a multi-year project,” Feeney added. “Moving forward, we’ll continue to do other things to address these disparities.”