- •Modulator therapies have led to weight gain in patients with Cystic Fibrosis
- •Eating disorders and body image disturbance are concerns in Cystic Fibrosis
- •Cystic Fibrosis providers feel uncomfortable screening for eating disorders
- •More resources are needed to identify and treat eating disorders in Cystic Fibrosis
Maintaining a healthy weight is a focus of Cystic Fibrosis (CF) care. With the increased use of highly effective CFTR modulators, many people with CF are gaining weight more easily, which may affect eating habits and body image. This study investigates providers’ understanding and current practices surrounding body image disturbance and disordered eating in people with CF.
We distributed a one-time web-based survey to United States (U.S.)-based CF healthcare providers via CF Foundation list servs. The survey investigated providers’ understanding and perceived importance of issues surrounding disordered eating and body image disturbance in adolescent and young adults (AYA) with CF as well as current screening practices. We used descriptive statistics to analyze participants’ characteristics and practices.
A total of 232 healthcare providers completed the survey. While most participants felt that screening for both body image disturbance and disordered eating should be standardized in CF care (79% and 82%, respectively), fewer than one third felt comfortable screening, and only one quarter actually screened for various eating disordered behaviors in daily practice. Only 2.7% reported using a formal screening tool. Participants reported provider assessment tools (86%), standardized partnerships with eating disorder specialists (80%), and CFF or national guidelines (79%) would be helpful to improve screening and counseling.
While most CF providers believe that body image disturbance and disordered eating are important topics in AYA with CF, few address these topics with their patients. The development of educational sessions and national guidelines may improve screening and counseling practices.
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Published online: December 02, 2022
Accepted: November 27, 2022
Received in revised form: November 21, 2022
Received: October 11, 2022
Publication stageIn Press Corrected Proof
☆Research Conducted at Boston Children's Hospital.
☆Study was presented at the 2021 North American Cystic Fibrosis Conference.
© 2022 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.