Too often, though, the unique needs of women with PD, from its effects on fertility, pregnancy, the menstrual cycle, and menopause to how it influences work and family life balance, go overlooked in their treatment, she says. That’s why Dr. Subramanian, a neurologist who treats patients with Parkinson’s at Ronald Reagan UCLA Medical Center and the West Los Angeles Veterans Administration, along with several colleagues from the United States, Canada, and Europe have issued a “call to action” for the medical community. Published on January 20 by the journal Movement Disorders, their commentary advocates for more research, customized treatments, education, and support to empower women living with PD and to address their unmet care needs.
Delays in Diagnosis and Treatment for Women With PD
“It’s shocking how bad the care is for some women with Parkinson’s,” Subramanian says. “So many physicians around the world associate the condition with older, affluent white men, and when women come in saying they have these symptoms, they are often dismissed as either having symptoms that are not real or needing a mental health care referral.” The result can be delayed diagnosis and treatment, she adds. Research has found that it takes up to 60 percent longer for women to be referred to a movement disorder specialist than men after they first develop PD symptoms.
A Call to Action for Better Care of Women With Parkinson’s
The article in Movement Disorders includes perspectives from three women with Parkinson’s who are leading advocates for people with the condition and who also happen to be healthcare professionals (a gynecologist, family doctor, and a dietitian). The authors cited the following key issues in PD care for women. Representation in clinical trials Women, as well as people of color, have historically been underrepresented in clinical trials of drug treatments for PD and devices designed to manage its symptoms. That needs to change, Subramanian says. “Many studies are looking at a very skewed population of patients and extrapolating the results to the rest of the world,” she says. As a result, many drugs are approved and used to treat PD patients without full understanding of how they may affect women in different stages of life, from those trying to become pregnant to those experiencing menopause." Patient education There is an urgent need to educate women with PD to empower them about how to communicate their symptoms and care needs so that their treatment can be tailored to their unique situation, the researchers say. Cultural sensitivity in self-care recommendations Similarly, healthcare professionals who treat women with PD should offer them guidance on “wellness and self-care strategies” that are culturally sensitive and customized, they say. “We know that exercise is beneficial for people with Parkinson’s, but not everyone can go to a gym,” Subramanian says. “A woman who is a devout Muslim and wears traditional dress may not be comfortable in a gym setting, so advising her to go to a gym doesn’t make any sense for her. We need to give women like her agency to say, ‘That doesn’t work for me. Is there another option?’” Awareness of stage in the reproductive cycle The management of women with PD needs to be customized to include, and account for, the unique stages of their lives, such as menstrual cycles, pregnancy, perimenopause, menopause, and post-menopause, according to Subramanian and her colleagues. Professional societies must develop guidelines for the use of oral contraceptive pills and hormone replacement therapy in these women, for example. Training for healthcare professionals Training programs for healthcare professionals who treat people with PD must provide the tools and resources needed to “accurately diagnose, proactively identify, and treat the unique symptoms of PD in women” and to ensure timely referral for specialty care and treatment, the researchers say. “Really, this is about getting neurologists and other professionals to stop seeing Parkinson’s as a disease that only affects white, married, affluent, older males,” Subramanian notes. “If you look at treatment guidelines, textbooks, and other materials, though, that’s overwhelmingly the image you see.” “And we need to change that,” she says.
