Department of Pediatrics, University of Pittsburgh School of Medicine, University Center, 120 Lytton Ave, Suite M060, Pittsburgh, PA 15213, United States; Center for Innovative Research on Gender Health Equity (CONVERGE), University of Pittsburgh, Pittsburgh, PA 15213, United States.
Cystic Fibrosis Foundation, Bethesda, MD 15213, United States.
J Cyst Fibros. 2024 Jul;23(4):639-646. doi: 10.1016/j.jcf.2024.03.007. Epub 2024 Mar 13.
To address sexual and reproductive health (SRH) concerns among people with cystic fibrosis(PwCF), the CF Foundation created the Sexual Health, Reproduction, and Gender Research (SHARING) Working Group. This report summarizes CF community SRH research priorities and workshop discussions/future study planning.
Pre-workshop, we distributed a community prioritization survey on CF SRH research/care. During the workshop, we used results and reviewed existing research to establish research priorities and design studies to address identified knowledge gaps.
A total of 303 respondents (85 % PwCF, 15 % caregivers) completed the survey. Highly-rated SRH topics were: 1) effects of CF modulator therapy on sex hormones; 2) effects of sex hormones on CF; 3) fertility; 4) pregnancy; and 5) SRH/mental health. Twenty-four workshop participants established the need for further research on sex hormones and CF, optimizing SRH care provision, and fertility/ART.
SRH is an important and emerging area in CF and thoughtful consideration of community perspectives can ensure that future research is relevant and responsive.
为了解决囊性纤维化患者（PwCF）的性健康和生殖健康问题，囊性纤维化基金会成立了性健康、生殖和性别研究（SHARING）工作组。本报告总结了囊性纤维化社区性健康研究的优先事项以及研讨会讨论/未来研究计划。
在研讨会之前，我们分发了一份囊性纤维化性健康研究/护理的社区优先事项调查。在研讨会期间，我们使用调查结果和已有的研究来确定研究重点，并设计研究来解决已确定的知识空白。
共有 303 名受访者（85%为 PwCF，15%为照顾者）完成了调查。性健康相关主题的评价很高，包括：1）CF 调节剂治疗对性激素的影响；2）性激素对 CF 的影响；3）生育能力；4）妊娠；以及 5）性健康/心理健康。24 名研讨会参与者认为需要进一步研究性激素和 CF、优化性健康护理服务以及生育能力/ART。
性健康是囊性纤维化领域的一个重要且新兴的领域，充分考虑社区的观点可以确保未来的研究具有相关性和回应性。
