Objective: Understand the role of women’s health and its effect on Parkinson’s disease (PD) and treatment outcome through a questionnaire available in English and Spanish.
Background: PD is sexually dimorphic, but little is known why women are at a lower risk and have different symptoms compared to men. Few studies have considered women-specific factors in research, yet these studies are small and contradictory. These factors are often ignored and overlooked by neurologists due to gender-neutral questionnaires, not only in the PD field but in all disease-related research.
Method: We compiled a list of women-specific health factors that must be covered due to their association or the lack of data in PD. The generation of the questionnaire was formed alongside the opinions of PD experts in the field. The questionnaire is on REDCap and is formatted using a combination of short-text, checkboxes, and Likert-type rating scales.
Results: This questionnaire is about 20 questions with an estimated time of completion of 20-25 minutes. The Parkinson’s Foundation: PD GENEration released our questionnaire in mid-November of 2021, and to date, there are over 400 completed responses with total participants having a mean age of 65 ± 9.7, and 75% of these women had an onset of PD during menopause, 16% had PD onset during regular menses, and 9% had PD onset during perimenopause.
Conclusion: This questionnaire is setting the foundation for the inclusion of women-specific factors for PD research and clinical care. There has been no template for addressing these sex-specific factors and this questionnaire sets the precedent for this. This project will empower women to advocate for optimal PD care based on their sex-specific experiences and urge the field to acknowledge the role of these factors in the heterogeneity of PD as this questionnaire has already sparked through PD GENEration.
To cite this abstract in AMA style:S. Rao, N. Gutierrez, A. Naito, K. Ghosh, B. Lapin, M. de Leon, I. Mata. Development of a Novel Questionnaire on Women’s Health to Understand Its Role in Parkinson’s Disease Development and Progression [abstract]. Mov Disord. 2022; 37 (suppl 2). https://www.mdsabstracts.org/abstract/development-of-a-novel-questionnaire-on-womens-health-to-understand-its-role-in-parkinsons-disease-development-and-progression/. Accessed September 22, 2023.
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MDS Abstracts - https://www.mdsabstracts.org/abstract/development-of-a-novel-questionnaire-on-womens-health-to-understand-its-role-in-parkinsons-disease-development-and-progression/