Sexual and Reproductive Health of Young Women With Cystic Fibrosis: A Concept Mapping Study

Adolescent and young adult (AYA) women with pediatric-onset chronic diseases, such as cystic fibrosis (CF), face disease-specific sexual and reproductive health (SRH) concerns. Using concept mapping (CM), this study aimed to identify the SRH topics and outcomes valued by AYA women with CF and their parents. Women with CF who were 13 to 30years of age and parents of 13- to 30-year-old daughters with CF participated in an online CM study. Participants individually brainstormed, rated, and sorted SRH topics important for AYA women with CF. Using multidimensional scaling, hierarchical cluster analyses, and t tests to assess rating differences, multidisciplinary stakeholders interpreted results during in-person meetings. Twenty-four participants (13 AYAs and 11 parents) generated 109 statements around SRH in CF; 88% completed rating and sorting. Sixteen stakeholders named 6 main clusters of concepts: fertility and pregnancy, deciding to have children, birth control, navigating life, sex, and gynecologic concerns. Participants rated birth control as highest in importance for adolescent women (mean = 3.9 ± 0.1 on a 5-point scale) and fertility and pregnancy as highest for young adult women (mean = 4.2 ± 0.04). Parents provided higher importance ratings for all clusters than patient participants. Stakeholders identified patient-centered outcomes for each cluster and focused on how to improve SRH knowledge, decision making, and patient-provider communication in the subspecialty setting. Eliciting patient-centered outcomes using CM can inform improvements in the care of AYAs with pediatric-onset chronic diseases. The SRH topics and patient-centered outcomes identified in this study should inform enhancements to comprehensive clinical care delivery for these populations.