Objective: To explore the occurrence of hormone-related symptom fluctuations and associated care in women with Parkinson’s disease (PD).

Background: Pre- and (peri)menopausal women with PD often report cyclic fluctuations of their symptoms and medication effectiveness. Research on this topic is scarce and there are no guidelines available on how to treat and support pre- and (peri)menopausal women with PD.

Method: In co-creation with women with PD, we developed a survey containing questions on general health, the menstrual cycle, peri- and (post)menopause. The survey was distributed nation-wide in the Netherlands. Survey results were analyzed using descriptive statistics. Additionally, we conducted qualitative interviews to explore experiences of women with PD regarding their received care. Interviews were analyzed using open coding and thematic analysis.

Results: 110 women with PD participated in the survey study, of whom 28 were still having periods, 15 were perimenopausal, 26 were postmenopausal, but were premenopausal at diagnosis, and 41 were in other hormonal stages. 12 women participated in an interview. Our study yielded three important insights: 1. About two-third of women perceive an aggravation of their PD symptoms and reduced effectiveness of their PD medication around their periods or during (peri)menopause; 2. Only 10% of women had discussed hormonal fluctuations in relation to their PD symptoms with a physician. Discussing these issues scarcely led to changes in treatment; 3. Lack of personal and societal awareness regarding women-specific issues in PD and a lack of personal insight into perceived symptoms were perceived as barriers for receiving proper care and support.

Conclusion: Our study confirms the occurrence of symptom fluctuations and reduced medication effectiveness in a majority of women who are premenopausal when diagnosed with PD. Future studies should explore ways to reduce fluctuations, with a specific focus on hormonal treatment options. Guidelines should be developed to treat and support women with PD and healthcare professionals should take initiative to talk about hormone-related issues. Women with PD should be empowered to start this conversation by educating them about their symptoms and representation of women with PD in popular media.

References: Our study confirms the occurrence of symptom fluctuations and reduced medication effectiveness in a majority of women who are premenopausal when diagnosed with PD. Future studies should explore ways to reduce fluctuations, with a specific focus on hormonal treatment options. Guidelines should be developed to treat and support women with PD and healthcare professionals should take initiative to talk about hormone-related issues. Women with PD should be empowered to start this conversation by educating them about their symptoms and representation of women with PD in popular media.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/women-with-parkinsons-disease-exploring-the-occurrence-of-hormone-related-symptom-fluctuations-and-associated-care/