Women with Parkinson’s disease: exploring the occurrence of hormone-related symptom changes and associated care

Introduction Pre- peri- and postmenopausal women with Parkinson's disease (PD) often report changes in their symptoms and medication effectiveness. Research on this topic is scarce. We explored the occurrence of hormone-related symptom fluctuations and associated care in women with PD. Methods A survey on women-specific issues in PD was developed in co-creation with women with PD and distributed in the Netherlands. Survey results were analyzed descriptively. In addition, we interviewed 12 women with PD to explore their experiences regarding women-specific PD care. Interviews were analyzed in a thematic analysis. Results Of 110 survey participants, 28 (25%) experienced cyclic bleeding, 15 (14%) were perimenopausal, 26 (24%) were postmenopausal, but pre- or perimenopausal at diagnosis, and 41 (37%) were in other hormonal stages. Key findings included: 1. Two-thirds of premenopausal women with cyclic bleeding noticed perceived PD symptom changes, usually a worsening, around bleeding. Seventy-seven percent of postmenopausal women perceived PD symptom changes after menopause, most often aggravation; 2. Hormone-related issues typically remained undiscussed and untreated; 3. Lack of personal and societal awareness regarding women-specific issues in PD and lack of personal insight into perceived symptoms were barriers for receiving care and support. Conclusions Women with PD report symptom fluctuations and reduced medication effectiveness. Clinical guidelines on women-specific care in PD should be developed. Healthcare professionals should initiate conversations about women specific care, and women should be empowered to start this conversation. Broader societal awareness of women-specific PD-challenges could be promoted through representation in media. Further research is essential.