Background: Males with cystic fibrosis (MwCF) face general and disease-specific sexual and reproductive health (SRH) concerns. Using concept mapping (CM), this study identified the SRH topics valued by members of the CF community.
Methods: MwCF 18 years and older, parents and partners of MwCF, and healthcare providers participated in an online CM study. Participants individually brainstormed, sorted, and rated SRH topics important for MwCF. Using multidimensional scaling, hierarchical cluster analyses, and t tests to assess rating differences, participants interpreted results during an online meeting.
Results: Eighty-nine participants (32 MwCF; 6 parents; 9 partners; and 42 providers) generated 125 statements on male SRH in CF. Seventy-eight percent completed sorting and 73% rated statements based on importance. During interpretation, 20 participants named six clusters of SRH topics: 1) Family building and fertility; 2) Psychosocial aspects of SRH; 3) Being a parent or partner as a MwCF; 4) Sexual development, function, and treatments; 5) SRH education, communication, and awareness; and 6) SRH risks, comorbidities, and aging. Participants rated family building and fertility as highest in importance (mean = 4.06±0.36 of 5). Providers issued higher importance ratings compared to MwCF and parent/partner participants. Participants identified patient-centered outcomes for each cluster and focused on enhancing SRH knowledge, decision-making, and patient-provider communication in CF care.
Conclusions: The SRH topics, importance, and patient-centered outcomes identified in this study can inform future interventions and research to optimize the comprehensive clinical care delivery for MwCF.
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