Women living with Parkinson’s disease (PD) must be better supported and empowered to address currently unmet medical needs, a new study concludes.
More research, customised treatments, education and bespoke support is needed to help women with PD, in ways that are not currently available, the report states.
The study, led by UCLA Health, make recommendations including:
- 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 organise 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
- Customise 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 (HRT)
- Provide guidance on culturally-sensitive wellness and self-care strategies that are customised 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.
The research was inspired by the fact that 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 personalising care or inspiring new avenues of scientific and clinical research,” said the research team.
“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.”
In the study, the researchers summarise 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 analysed, 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.
