Healthcare priorities and needs for LGBTQIA+ people with cystic fibrosis: A concept mapping study

There are known health inequities among people with cystic fibrosis (PwCF) who are part of a marginalized minoritized community. Lesbian, gay, bisexual, transgender, queer, intersex, asexual, and other gender and sexual minority (LGBTQIA+) people experience health inequity and distrust of healthcare systems due to prior and anticipated discrimination and stigma. Little is known about the priorities and needs of LGBTQIA+PwCF. This study sought to identify health priorities and needs of LGBTQIA+PwCF.

We recruited LGBTQIA+PwCF and providers of CF and LGBTQIA+ care to participate in an online concept mapping study. Participants responded to the brainstorming prompt about the experiences of LGBTQIA+PwCF and subsequently sorted and rated the statements. Multidimensional scaling and hierarchical cluster analysis determined the clusters representing the brainstormed statements. Participants finalized the concept map through focus groups.

A total of 39 individuals (22 PwCF; 17 providers) who ranged in age from 17-62 years (mean 36, SD 10.6 years) brainstormed 202 statements that the study team consolidated into 102 statements. Sorting identified key clusters including increased provider education and considerations for reproductive and gender affirming care. The statements with the most agreement referred to dual stress from both LGBTQIA+ identity and navigating CF-related health needs and for CF care teams to better understand and respect the needs of LGBTQIA+PwCF.

This study highlights the unique health needs of LGBTQIA+PwCF and underscores the paucity of current research. Our findings provide insights for directing future research, creating educational interventions, and developing medical spaces for optimal care.