As medicine becomes more aware of the need to pay attention to gender as a critical variable in health care, more initiatives are launching to provide this gender-based attention. We wrote recently about the American Cancer Society establishing ResearcHERS to bring more women into the fundraising and research on cancer, and do more to address gender issues in treatment.
Now, as another example of medicine become more gender-aware, the Parkinson’s Foundation has created the Women and Parkinson’s Initiative to address long-standing gender disparities in Parkinson’s research and care. The initiative represents the first patient-centered action agenda to maximize quality of life for women with Parkinson’s disease (PD).
“The Parkinson’s Foundation is fully invested in improving health outcomes for women with Parkinson’s, and this research agenda has been a critical next step,” said Veronica Todaro, Parkinson’s Foundation CEO and Executive Vice-President. Todaro is project lead for “Women and Parkinson’s Teams to Advance Learning and Knowledge,” or Women and PD TALK, a key component of the Women and PD Initiative.
“Historically, Parkinson’s care has been based on research that has focused too narrowly on men or has neglected to consider relevant gender differences,” said Allison W. Willis, MD, MS, Co-Leader of the Women and PD Project and an Assistant Professor of neurology and of epidemiology at the University of Pennsylvania. “The Parkinson’s Foundation is defining gender-specific research and care practices and working with health care professionals to improve care provided to women with Parkinson’s.”
Parkinson’s affects approximately one million Americans and 10 million people worldwide. It is the second-most common neurodegenerative disease after Alzheimer’s, and is the fourteenth-leading cause of death in the United States. Symptoms include a progressive loss of motor control including shaking and tremoring, as well as well as non-motor symptoms such as depression and anxiety. There is no cure for Parkinson’s, and every year 60,000 new cases are diagnosed in the United States.
PD affects more men than women, although roughly 400,000 American women have Parkinson’s. To address disparities in treatment, care and research for women with Parkinson’s, over the past two years the Parkinson’s Foundation has hosted 10 regional and one national forum bringing together women with PD and healthcare professionals to recommend research and care priorities. As a result, the Parkinson’s Foundation (PF) has developed comprehensive, patient-centered directives to improve the study and treatment of PD in women.
The PF report, “Women and Parkinson’s: Closing the Gender Gap in Research and Care,” notes that, “Women have been shown to have a lower risk of developing PD, and research suggests that there are differences in the way that men and women experience Parkinson’s. Studies indicate that women diagnosed with PD report different symptoms, more often report side effects and changes in their symptoms throughout the day, and receive lower-quality healthcare than men.”
The report identifies nine priorities to address gender disparities in women’s PD care including ensuring that research is relevant to women with Parkinson’s; using shared decision-making tools between medical professionals and women to promote effective communication in creating PD treatment goals; involving care partners and targeting resources to help patients manage their own mental health and well-being; and providing women with Parkinson’s the knowledge and tools early in their diagnosis to maintain a desired quality of life.
“Gender accountability in medical research and care, [recognizing] that women experience Parkinson’s disease differently from men, is patient-centered outcomes research at its best,” said Ann Boylan, MA, Parkinson’s advocate and woman living with PD. “We need updated and comprehensive information looking at how women are impacted by PD.”
Among steps it is taking to advance this agenda, the PD Foundation is supporting research through the Parkinson’s Outcomes Project (the largest ongoing clinical study of Parkinson’s) to identify gender differences in clinical care. The PD Foundation is also convening experts to identify critical research questions examining gender differences in Parkinson’s risk, and partnering with 45 designated PD Foundation Centers of Excellence worldwide on shared clinical decision-making tools.
One research area that may be particularly productive in improving treatment for women with PD is further exploring the relationship between PD and autoimmune function. In research that was partly funded by the Parkinson’s Foundation, scientists found that an attack by a person’s own immune system can cause loss of brain neurons in Parkinson’s disease (PD). Researchers linked this attack to the presence of a protein that produces toxic clumps in the brain cells of PD sufferers. These findings were published in the journal Nature in 2017 and may be relevant to gender disparities in PD treatment and care as women constitute 78 percent of those diagnosed with auto-immune disorders. Moreover, PD is like many diseases in which men have been over-represented in clinical trials, and therefore potential therapies have been tested almost exclusively on male subjects.
The Women and Parkinson’s Teams to Advance Learning and Knowledge (Women and PD TALK) project was funded through a Patient-Centered Outcomes Research Institute (PCORI) award. PCORI is an independent nonprofit, nongovernmental organization based in Washington, DC, that was authorized by Congress in 2010 to help address medical treatment questions facing patients, families and clinicians daily.