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 a worsening; 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.