Highlights
- •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
Abstract
Background
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.
Methods
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.
Results
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.
Conclusion
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.
Keywords
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Article info
Publication history
Published online: December 02, 2022
Accepted:
November 27,
2022
Received in revised form:
November 21,
2022
Received:
October 11,
2022
Publication stage
In Press Corrected ProofFootnotes
☆Research Conducted at Boston Children's Hospital.
☆Study was presented at the 2021 North American Cystic Fibrosis Conference.
Identification
Copyright
© 2022 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.