Sexual Orientation, Gender Identity, and Experiences During, Awareness of, and Attitudes Toward Research for People With Parkinson Disease.

TitleSexual Orientation, Gender Identity, and Experiences During, Awareness of, and Attitudes Toward Research for People With Parkinson Disease.
Publication TypeJournal Article
Year of Publication2024
AuthorsBayram, E, Rigler, N, Wang, KT, Tsai, A, Flatt, JD
JournalNeurol Clin Pract
Volume14
Issue4
Paginatione200304
Date Published2024 Aug
ISSN2163-0402
Abstract

BACKGROUND AND OBJECTIVES: Presentation, progression, and treatment of Parkinson disease (PD) can differ based on sex and gender. However, knowledge on PD is limited by the characteristics of research participants, and most of the participants are men. In this study, we aimed to identify the attitudes toward and barriers to research participation for people with PD (PwP) based on their sexual orientation and gender identity.

METHODS: Data were obtained from the Fox Insight on March 16, 2023, for PwP who completed the . Responses were compared between sexual and gender minorities (SGM) (n = 136), cisgender heterosexual women (n = 1,479), and cisgender heterosexual men (n = 1,445). Associations between age, socioeconomic variables, and the responses that differed between the groups were assessed with linear models.

RESULTS: More than 68% of the participants were willing to participate in research; only 43.7% heard about research opportunities, and 52.3% knew where to find a study. Approximately 86.8% of the participants reported hearing about a study from their doctor would make them more likely to participate. A higher percentage of SGM were concerned about transportation and researchers not understanding or respecting their beliefs; a higher percentage of cisgender heterosexual women were concerned about transportation, data privacy, and their family's reaction to genetic results; and a higher percentage of cisgender heterosexual men were concerned about time required for research activities and complex forms. Age and socioeconomic variables were significantly associated with approach toward research that differed between the groups.

DISCUSSION: PwP are willing to participate in research, and health care providers can facilitate their participation. Barriers to research participation related to sexual and gender identity exist and must be addressed to increase our understanding of PD in underrepresented populations.

DOI10.1212/CPJ.0000000000200304
Alternate JournalNeurol Clin Pract
PubMed ID38808025
PubMed Central IDPMC11129331
Grant ListK99 AG073453 / AG / NIA NIH HHS / United States