性取向、性别认同以及帕金森病患者在研究过程中的经历、对研究的认识和态度。

IF 2.3 Q3 CLINICAL NEUROLOGY
Neurology. Clinical practice Pub Date : 2024-08-01 Epub Date: 2024-05-16 DOI:10.1212/CPJ.0000000000200304
Ece Bayram, Nicole Rigler, Kevin T Wang, Andrew Tsai, Jason D Flatt
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引用次数: 0

摘要

背景和目的:帕金森病(Parkinson disease,PD)的表现、进展和治疗会因性别而异。然而,有关帕金森病的知识却因研究参与者的特点而受到限制,而且大多数参与者都是男性。在这项研究中,我们旨在确定帕金森病患者(PwP)基于性取向和性别认同参与研究的态度和障碍:我们于 2023 年 3 月 16 日从 Fox Insight 获得了填写了 "对 PD 研究和基因测试的态度和信念 "的 PwP 的数据。对性和性别少数群体(SGM)(n = 136)、同性异性恋女性(n = 1 479)和同性异性恋男性(n = 1 445)的回答进行了比较。我们使用线性模型评估了年龄、社会经济变量和不同组别之间不同回答之间的关联:超过 68% 的参与者愿意参与研究;只有 43.7% 的人听说过研究机会,52.3% 的人知道在哪里可以找到研究。约有 86.8% 的参与者表示,从医生那里听说研究机会会让他们更愿意参与。有较高比例的女性同性恋者担心交通问题和研究人员不理解或不尊重他们的信仰;有较高比例的同性异性恋女性担心交通问题、数据隐私和家人对基因结果的反应;有较高比例的同性异性恋男性担心研究活动所需的时间和复杂的表格。年龄和社会经济变量与不同群体对研究的态度有显著关联:讨论:残疾人愿意参与研究,医疗服务提供者可以为他们的参与提供便利。与性和性别认同相关的研究参与障碍是存在的,必须加以解决,以增加我们对代表性不足人群中的帕金森病的了解。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Sexual Orientation, Gender Identity, and Experiences During, Awareness of, and Attitudes Toward Research for People With Parkinson Disease.

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 Attitudes and Beliefs Regarding Research and Genetic Testing for PD. 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.

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来源期刊
Neurology. Clinical practice
Neurology. Clinical practice CLINICAL NEUROLOGY-
CiteScore
4.00
自引率
0.00%
发文量
77
期刊介绍: Neurology® Genetics is an online open access journal publishing peer-reviewed reports in the field of neurogenetics. The journal publishes original articles in all areas of neurogenetics including rare and common genetic variations, genotype-phenotype correlations, outlier phenotypes as a result of mutations in known disease genes, and genetic variations with a putative link to diseases. Articles include studies reporting on genetic disease risk, pharmacogenomics, and results of gene-based clinical trials (viral, ASO, etc.). Genetically engineered model systems are not a primary focus of Neurology® Genetics, but studies using model systems for treatment trials, including well-powered studies reporting negative results, are welcome.
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