From Awareness to Action: Developing A Cystic Fibrosis-Tailored Screening for Disordered Eating Behaviors

Cystic fibrosis (CF) is a diet-related, chronic condition associated with an increased risk of developing disordered eating behaviors (DEB) and eating disorders (ED). Some people with CF (PWCF) present with DEB like the general population; however, there are unique DEB that PWCF may experience. We conducted qualitative interviews with healthcare professionals (HCP) to understand their experiences with DEB in PWCF.

HCP with CF experience were identified and recruited via email. Semi-structured qualitative interviews were conducted virtually via Doximity encompassing three categories: (1) eating behaviors in PWCF, (2) impact of disordered eating in CF, and (3) experiences managing DEB in PWCF. Participants provided consent to be recorded. Content underwent thematic analysis.

Twelve qualitative interviews were conducted with HCP. The following themes were elucidated: (1) new challenges regarding weight gain and increased societal weight stigma have arisen following the advent of highly-effective modulator therapies, (2) HCP have limited resources given a lack of evidence-based guidance, and (3) despite experience, HCP largely feel ill-equipped to address, manage, and treat DEB in PWCF.

CF is associated with increased risk for the development of DEB. To date, there is no validated CF-tailored screening tool for identifying DEB in PWCF in the United States. Qualitative interview data with HCP indicate that many seem to feel ill-equipped to address, manage, and treat DEB, and resources are limited. It remains critical to develop a validated, CF-tailored screening tool for identifying DEB within PWCF to improve overall DEB management and mitigate risk for ED.