A Final Update on Women and PD TALK

If you have been following Twitchy Woman for the last few years, you have seen numerous updates on “Women and PD TALK”, the project that I co-chaired for the Parkinson’s Foundation that looked at the unmet needs of women with PD. Last Friday, the Patient-Centered Outcomes Research Institute (PCORI), which gave a grant to the Parkinsons Foundation for the study, published a story about our work on its home page. I am sharing it with you here today.

A special thank you to Melissa Schenkman, who wrote the article.

Improving Life for Women with Parkinson’s Disease

PCORI Engagement Award supports the creation of a national, prioritized women and Parkinson’s research and care agenda.

By Melissa Schenkman, MPH, MSJ Writer and Editor PCORI

November 2019

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.

Graphic for November 2019 PCORI Story on women and Parkinson's disease.
An illustration of a human body with icons illustrating motor skill symptoms and nonmotor skill symptoms
Bradykinesia, Vocal symptoms, Rigidity and postural instability, tremor

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, she 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.”

Her search for information on PD in women drove her to become the lead patient partner on a Eugene Washington PCORI Engagement Award, supporting a project to improve the lives of women with PD through research and care.

A Different Experience

Krischer is one of nearly one million Americans who by 2020 will be living with PD. It’s a number that is greater than the number of people diagnosed with multiple sclerosis, Lou Gehrig’s disease, and muscular dystrophy, combined.

PD is a neurodegenerative disorder that breaks down neurons, cells that are the building blocks of our central nervous system, the body’s own electrical grid. It mainly affects nerves producing the neurotransmitter dopamine, a substance allowing the electrical transfer of messages from one nerve cell to another or from a nerve cell to a muscle.

People can experience both motor and non-motor symptoms. Motor symptoms can include resting tremor. However, non-motor symptoms include less visible ones, such as depression.

While the cause of PD is unknown, researchers have found that men are 1.5 time’s more likely to have PD than women.  

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. They’d look at them and say, ‘Where’s your husband? Isn’t he the one with Parkinson’s?

Sharon Krischer
Lead Patient Partner, Co-lead, Los Angeles, CA, forum

Women’s experiences with PD differ from men. They can face longer times between symptom onset and diagnosis, and between symptom appearance and visiting a movement disorders specialist, according to a small study conducted at Beth Israel Medical Center. Women may experience more non-motor symptoms and are more likely to be single or widowed, while men are more likely to rely on a spouse as their primary caregiver.

“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 women with Parkinson’s develop in conjunction with not having a support structure, the quality of life challenges they face are huge.”

The project created a three-pronged agenda specifically for women with PD. The agenda focuses on:

  • Increasing and improving research (basic, translational, and clinical) to better understand PD in women
  • Improving healthcare access and delivery for women with PD
  • Empowering women with PD and their care teams to advocate for optimal Parkinson’s care focused on women’s unique experiences

Maximizing Quality of Life

The decision to shine a light on women living with PD came from informal conversations in 2014 with women noting the lack of information, resources, and connections available to them.

Photo for November 2019 PCORI Story on women and Parkinson's disease.
A photo showing four women living with Parkinson’s disease as they lead a panel session at the National Forum in Houston, Texas, in October 2018.
From left: Yvonne Hylton, Kelly
From left: Yvonne Hylton, Kelly Weinschreider, Lisa Cone, and Ann Boylan.
(Photo courtesy of Parkinson’s Foundation)

Women living with Parkinson’s disease lead a panel session at the National Forum in Houston, Texas, in October 2018.

Answering the call to action, Veronica Todaro, MPH, Feeney, and others launched a Women and PD Initiative, focusing on education and information. They organized a conference in 2015, selecting 25 women to attend.

Krischer was one. There, she learned about the limited information on women and PD, including knowledge on mental health and intimacy.

Attendees applied the knowledge, engaging their communities. For example, Krischer started a support group for women with PD, hosting activities including boxing classes and even a sex therapist’s talk.  

“We now had the educational and community pieces, but still needed to understand where the gaps in patient-reported outcomes were,” said Todaro, executive vice president and chief operating officer, Parkinson’s Foundation.

It sparked her idea for leading a PCORI-funded project to create a national, prioritized Women and Parkinson’s research and care agenda. She collaborated with a national team, including women with PD, and representatives from medical universities and Parkinson’s organizations who assisted in creating materials and ensuring activities aligned with community needs.

The project, Women and PD Teams to Advance Learning and Knowledge (TALK), “allowed for a structured way to bring the voices of women with Parkinson’s into discussions around better outcomes related to decision making with providers and researchers to maximize women’s quality of life,” Todaro said.  

Graphic for November 2019 PCORI Story on women and Parkinson's disease.
Topic Talk: Topic discussion differences between women with Parkinson's disease and other stakeholders at the 10 Women and PD Talk regional forums
A graphic illustration o

In all, 242 women with PD and 178 stakeholders—caregivers, family members, health professionals, government representatives, and others working directly with PD patients—attended 10 forums around the country.

Empowering the Patient Voice

Women with PD discussed their experiences in relation to risk, symptoms, treatment, and care.

Krischer co-led the Los Angeles forum, where discussions included the difficulty of diagnosis, insomnia, and dismissiveness of some doctors because of PD’s association with men.

Another interesting issue was women’s experiences with 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, South Dakota, 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.

Not surprising given that until August 2018, there was only one movement disorders specialist in South Dakota—located 350 miles from Tidwell.

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.

Mary Tidwell
Patient Partner, Women and PD TALK, Co-lead,
Sioux Falls, SD, forum

Women in rural areas face even greater challenges. For some, access to care means community health centers without neurologists and having the closest neurologist hundreds of miles away. Distance combined with the farming work cycle and the state’s harsh weather can limit opportunities to see a neurologist.

“It can be a very lonely disease,” Tidwell said.  “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.”

The importance of establishing connections and having patients lead the way resonated with project stakeholder Ruth Schneider, MD, a movement disorders specialist at the University of Rochester’s Parkinson’s Foundation Center of Excellence.

“In my practice, I’ve found that women are more likely to internalize the disease, so PD becomes a part of their identity rather than a medical illness,” said the Rochester forum’s co-leader. “We are increasingly recognizing gender disparities in PD and our approach to addressing them has to be driven by our patients if we will make meaningful change.”

Making a Lasting Impression

Patients, researchers, and others disseminated the agenda through multiple efforts.

Yvonne Hylton, a woman with PD, Allison Willis, MD, a project co-lead, Feeney, and clinician stakeholders presented the agenda at the 2019 Parkinson’s Foundation Center Leadership Conference—an audience of leading researchers and clinicians from the foundation’s Centers for Excellence around the world.

The project is also affecting medical studies. Researchers reanalyzed data in the Parkinson’s Outcomes Project database, examining sex in relation to neuropsychological referral and adherence, comparing models of care within the foundation’s Centers of Excellence. They presented the results at the Movement Disorders Society annual meeting.

Image for November 2019 PCORI Story on women and Parkinson's disease.
Sharon Krischer writes a blog to encourage the exchange of ideas and solutions with others affected by Parkinson’s disease.
Sharon Krischer writes a blog to encourage the exchange of ideas and solutions with others affected by Parkinson’s disease.

Finally, several breakout sessions helped inform the Newly Diagnosed campaign, which aims to close the information gap so people can better manage their PD from the start.

While efforts to integrate and disseminate the agenda into future research continue, the patient presence remains constant, including their role in a second PCORI Engagement Award. The award will support the foundation in creating a nationwide standardized model of patient advisory boards for implementing patient engagement at medical institutions and furthering Parkinson’s patient-centered comparative effectiveness research.

“I think that scientists have an idea of what they are looking for, but I think you get a better perspective of what’s really happening by including the patient voice in the process,” Krischer said. “We are the ones going through this and what you think we need may not be what we think we need.”

Women and Parkinson’s: Closing the Gender Gap in Research and Care

When I first experienced PD symptoms, they were explained away as the stress of a working mom. I was prescribed medication for anxiety and the eventual diagnosis of Parkinson’s was not made for another two years. – Carol Clupny, MS, Women and Parkinson’s Advocate

Five years ago, a question was posed to the Parkinson’s Disease Foundation (now the Parkinson’s Foundation) by a woman with Parkinson’s Disease:  “Why are women with PD treated as little men?”  Most research did not include women, medications tested only on men were given to women in the same doses, symptoms varied, and more often than not, it took women much longer to be diagnosed and then treated for PD.  This one question led to the Women & PD Initiative hosted the Parkinson’s Disease Foundation in September 2013.  I was one of 25 women who attended and it changed my outlook on life with PD.

A year later, I was asked by Ronnie Todaro, MPH, Executive VP, Parkinson’s Foundation, to be part of the leadership team, along with Allison W. Willis, MD, MS, Assistant Professor of Neurology and of Epidemiology University of Pennsylvania School of Medicine, and Megan Feeney, MPH, from the Parkinson’s Foundation, to explore these issues more deeply in order to identify what was needed for better care and treatment of women with Parkinson’s.   This nationwide study titled The Women and PD Teams to Advance Learning and Knowledge (Women and PD TALK)  was made possible through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (3998-PDF).

A research and care agenda was derived from 10 regional forums, as well as a national forum, hosted across the United States, to understand the experiences of women with PD. This agenda reflects the priorities identified by women with PD, medical professionals and care teams at these forums. The purpose of this agenda is to promote research and care practices that enable women with Parkinson’s disease to maximize their quality of life.   I have included the 9 priority areas that have been identified below.  You can read the entire publication here.

Women and PD Research Needs

Research

  1. Inclusiveness: Parkinson’s cannot be fully understood without increased representation of women in PD research, the mechanisms, progression of and treatment response.
  2. Relevance: Parkinson’s research must examine the effects of biological sex — including sex hormones as they relate to PD risk, progression and response to treatments.
  3. Quality: Existing data should be pooled and analyzed for information about women with PD.

Care

  1. Accessibility: Parkinson’s care must be more accessible to women. Programs should target health, wellness and management of PD and should help women feel comfortable and included.
  2. 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.
  3. Communication: Medical professionals and women with PD should utilize shared decision-making tools to better communicate and work together to identify goals for treatment.

Education and Empowerment

  1. Self-management: Provide women with Parkinson’s with the knowledge and tools early in their diagnosis to maintain a desired quality of life.
  2. Shared Responsibility: Care teams should better understand the needs and priorities of women with PD, being more involved and not relying on the woman to understand all aspects of her disease.
  3. Advocacy: Additional education efforts are needed to increase public awareness about PD.

I personally want to thank everyone who attended our 10 Forums and the National Forum, along with Ronnie Todaro,  Dr. Allison Willis and Megan Feeney, who worked so hard with me to ensure the success of this project.   My hope is that with this agenda, we now have the tools to reach out to physicians, other health care professionals, family members and anyone else who helps to provide care and treatment of women with PD, so that we, as women with PD, will no longer be treated just as “Little Men”.