Investigating the Interplay Between Having Cystic Fibrosis and Being a Member of the LGBTQIA+ Community: Protocol for the PRIDE CF Study.

Abstract

The impact of the intersectional lived experience of having a chronic health condition and identifying as lesbian, gay, bisexual, transgender, queer, intersex, asexual or another sexual or gender minority (LGBTQIA+) on health and wellbeing is largely unknown. In this article, we describe the development and structure of PRIDE CF, an innovative, large-scale epidemiologic study using a mixed-methods team science approach to understand the experiences and health outcomes of people with cystic fibrosis (PwCF) who identify as a gender or sexual minority. Our four separate but symbiotic projects utilize the PRIDE CF cohort (n?~?300) with the shared goal of better understanding the needs of LGBTQIA+ PwCF. We use a fully decentralized study design to recruit a national group of participants from a small population within a small population and strive to protect participants' confidentiality and privacy. Results will inform intervention development and testing to improve health for this population. This study is the first to comprehensively investigate the long-term impact and experiences of LGBTQIA+ identity on a person with any chronic condition and, thus, can serve as a model for future collaborations outside of cystic fibrosis.

View details for DOI 10.1002/ppul.71154

View details for PubMedID 40536173