Researchers call for more work to address unmet needs of women with Parkinson's disease

Researchers in a multi-institution study led by UCLA Health have identified several overlooked issues affecting women with Parkinson's Disease (PD) and call for more research, customized treatments, education and support to empower women living with this disease and to address their unmet medical needs.

The researchers' 'Call to Action' includes the following:

• Create a framework to address gaps and establish global collaboration to answer key research questions, including drug and device studies that include women and address genetic and hormonal considerations.
• Educate women with PD to empower them about how to communicate their symptoms and needs, engage in research and organize as a community in support of one another.
• Develop tools that track women's unique movement and non-movement symptoms as well as psychological and social support needs, such as a symptom diary.
• Customize management of PD to include the unique stages of women's lives such as menstrual cycles, pregnancy, peri-menopause, menopause and post-menopause.
• Develop guidelines for the use of oral contraceptive pills and hormone replacement therapy.
• Provide guidance on culturally-sensitive wellness and self-care strategies that are customized for women.
• Establish basic core competencies for clinicians treating PD that include how to accurately diagnose, proactively identify and treat the unique symptoms of PD in women and to ensure timely referral for specialty care and treatment.
• Provide better guidance for caregivers and families who are supporting women with PD.

Background

Personalized medicine that considers sex, gender and culture has become the vanguard in medical specialties such as cardiology and oncology. (Sex and gender are defined as noted below.)

In the field of neurology, the effect of sex and gender differences on prevention, diagnosis and management has primarily focused on the fields of stroke, epilepsy, dementia and migraines. In PD, although sex and gender differences have been studied, the main findings have been that PD is more common in men than women, and that there may be differences in non-movement and movement symptoms in men and women throughout various stages of the disease.

Despite these findings, studies looking at sex and gender differences in PD have not led to personalizing care or inspiring new avenues of scientific and clinical research. Moreover, the research that has been done has focused on biological differences between men and women, which leaves out the psychosocial context that impacts clinical care and quality of life for women with PD.

Note: "Sex" refers to the different biological and physiological characteristics of males and females such as reproductive organs, chromosomes, and hormones, while "gender" refers to the socially constructed characteristics of women and men – such as norms, roles and relationships of and between groups of women and men.

Methods

In the study, the researchers summarize data from current studies looking at sex, gender and psychosocial differences in PD and identify gaps that need to be targeted, proposing possible strategies for management, advocacy and research on behalf of women living with PD. Among the areas analyzed, the researchers reviewed recent studies that examined epidemiology; risk factors; sex hormones; awareness, delayed diagnosis or misdiagnosis and communication; movement and non-movement symptoms; management and treatment; hormonal life stages: premenstrual, pregnancy and pre-menopause; psychosocial and mental health issues; caregiving; wellness strategies and engagement of women in research.

Impact

These findings suggest that addressing disparities in healthcare must include women's issues in PD.