By Melissa Schenkman, MPH, MSJ
PCORI Engagement Award supports the creation of a national, prioritized women and Parkinson’s research and care agenda.
As an audiologist, Sharon Krischer used her skills to help others improve their hearing. But, for a long time, she couldn’t hear what her own body was telling her.
The mother of three daughters and grandmother of four remembers writing thank you notes one day when her right foot started shaking. It continued happening occasionally, but the inconsistency made Krischer think nothing of it until she broke her opposite leg and the twitch in her right foot returned. This time it wasn’t going away.
Krischer’s internist prescribed anti-anxiety medication, but the tremor spread to her right hand. She saw a neurologist who said she had a Parkinson’s-like tremor and prescribed an anti-Parkinson drug.
After experiencing hallucinations from the medication, her internist referred her to a movement disorders specialist at University of California, Los Angeles. There, 18 months after first seeing symptoms, Krischer received a diagnosis of Parkinson’s disease (PD). She was 57 years old.
“The first year is very, very hard if you are a young woman with PD because you don’t know how people will react,” Krischer said. “It’s also hard to go from being the caregiver to receiving care, especially if you have children.”
Krischer’s search for information on PD in women led her to become the lead patient partner on a project funded by the Patient-Centered Outcomes Research Institute (PCORI) entitled “Women and PD Teams to Advance Learning and Knowledge (TALK).” PCORI — a Congressionally-authorized, independent nonprofit organization — funds research to provide patients, caregivers, and clinicians with evidence-based information to make better-informed health care decisions. A Eugene Washington PCORI Engagement Award supported the project to improve the lives of women with PD through research and care.
A Different Experience
Krischer is one of nearly one million Americans living with PD, which exceeds the number diagnosed with multiple sclerosis, Lou Gehrig’s disease, and muscular dystrophy, combined.
PD is a neurodegenerative disorder that breaks down neurons, the cells that are the building blocks of our central nervous system, the body’s own electrical grid. It mainly affects nerves that produce dopamine, a neurotransmitter that enables the electrical transfer of messages between nerve cells, or from nerve cells to muscles. People with PD can experience motor and non-motor symptoms. Motor symptoms can include resting tremor. Non-motor symptoms are less visible and include depression. While PD’s cause is unknown, men are 1.5 times more likely to have PD than women.
Women’s experiences with PD differ from men’s and may include more non-motor symptoms. Women are more likely to be single or widowed, while men are more likely to rely on a spouse as their primary caregiver. Women can face longer times between symptom onset and diagnosis, and between symptom appearance and visiting a movement disorders specialist, according to a study conducted at Beth Israel Medical Center.
“A lot of people measure health through mortality. If that is the outcome you’re looking at, of course, men have poorer health outcomes if women live longer,” said Megan Feeney, MPH, senior manager, community engagement at the Parkinson’s Foundation, who helped spearhead their PCORI-funded project. “But, when you look at other health issues [that] women with Parkinson’s develop in conjunction with not having a support structure, the quality of life challenges they face are huge.”
The Women and PD TALK project worked to develop a national, prioritized research and care agenda specifically for women with PD. In all, 242 women with PD and 178 other stakeholders — caregivers, family members, health professionals, government representatives, and others working with PD patients — attended 10 forums held around the country to develop the Women and Parkinson’s research and care agenda. The process allowed for a structured way to bring the voices of women with Parkinson’s into discussions about better outcomes related to decision-making with both providers and researchers.
The Women and Parkinson’s research and care agenda focuses on:
- Increasing and improving research to better understand PD in women;
- Improving healthcare access and delivery for women with PD; and
- Empowering women with PD and their care teams to advocate for optimal Parkinson’s care focused on women’s unique experiences.
Empowering the Patient Voice
Krischer co-led the Los Angeles forum, where discussions included the difficulty of diagnosis and experiences in seeking support. “Several women went to a support group only once and never went back because it was almost all men. The only women there were the wives,” Krischer said. “They’d look at them and say, ‘Where’s your husband? Isn’t he the one with Parkinson’s?’”
Experiences like this were the norm in Sioux Falls, SD, where Mary Tidwell lives. She started a support group for women after her 10-month journey to receiving her PD diagnosis. She believes it’s the only group specifically for women in the state. “There’s a real hunger for opportunities to connect with other people that have the disease, to learn from each other, and to support each other,” Tidwell said.
Patients, researchers, and others have disseminated the agenda through multiple efforts, including a presentation at the 2019 Parkinson’s Foundation Center Leadership Conference.
Efforts to integrate and disseminate the agenda into future research continue, including a second PCORI Engagement Award supporting creation of a nationwide standardized model of patient advisory boards to advance patient-centered comparative effectiveness research on PD. View the full PCORI story at www.pcori.org/stories. To learn more about PCORI and its focus on patient-centered outcomes research, visit www.pcori.org.
Melissa Schenkman is a writer and editor at PCORI. She has an MPH in behavioral science and health education from the Rollins School of Public Health at Emory University, and an MSJ from the Medill School of Journalism, Media and Integrated Marketing Communications at Northwestern University, where she received the Comer Scholarship in Health, Medical and Environmental Reporting. She is also a 2020 Hermes Creative Awards recipient in Web Writing/Content.
https://www.parkinson.org/Understanding-Parkinsons/Statistics; the agenda cites: