Using concept mapping, members of the CF community identified six clusters of sexual and reproductive health topics important for males with cystic fibrosis, with family building and fertility rated highest in importance, and providers rating topics as more important than patients and family members.
Eighty-nine participants from the CF community generated 125 statements on male sexual and reproductive health in CF.
Participants identified six clusters of sexual and reproductive health (SRH) topics for males with cystic fibrosis.
Family building and fertility was rated the highest in importance among the six SRH clusters.
Healthcare providers rated SRH topics as more important compared to males with CF and parent/partner participants.
Participants identified patient-centered outcomes for each SRH cluster focused on enhancing knowledge, decision-making, and patient-provider communication.
The study used concept mapping methodology combining brainstorming, sorting, and rating tasks conducted entirely online.
This research examined which sexual and reproductive health (SRH) topics matter most to males with cystic fibrosis (CF) and their communities. Using a structured research method called concept mapping, the study gathered input from 89 people including men with CF, their parents and partners, and healthcare providers. Together, they generated 125 statements about male SRH in CF, which were organized into six topic areas: family building and fertility; emotional and psychological aspects of sexual health; being a parent or partner while living with CF; sexual development, function, and treatments; SRH education and communication; and health risks, other conditions, and aging-related concerns. The study found that family building and fertility was considered the most important topic, reflecting that many males with CF are infertile due to a condition called congenital bilateral absence of the vas deferens. Notably, healthcare providers consistently rated SRH topics as more important than the males with CF and their family members did, suggesting a potential mismatch in how urgently patients and providers view these issues. Participants across all groups emphasized the need for better knowledge-sharing and improved communication between patients and their healthcare teams. This research suggests that sexual and reproductive health is a multifaceted concern for males with CF that goes well beyond just fertility, encompassing emotional wellbeing, relationships, education, and long-term health. The findings could help shape future programs, resources, and clinical guidelines to better address the full range of SRH needs for this population, ensuring that care is more patient-centered and that men with CF have the information and support they need to make informed decisions about their sexual and reproductive lives.
Prangley K, Stransky O, Burke J, Ladores S, Hughan K, Sawicki G, et al.. (2025). Male sexual and reproductive health in cystic fibrosis: A concept mapping study.. Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society. https://doi.org/10.1016/j.jcf.2025.01.011