Original Article|Articles in Press

Clinician perspectives on assessing for disordered eating and body image disturbance in adolescents and young adults with cystic fibrosis

Published:December 02, 2022DOI:


      • 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.


      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


      Subscribe to Journal of Cystic Fibrosis
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect


        • Sawicki GS
        • Sellers DE
        • Robinson WM.
        High treatment burden in adults with cystic fibrosis: challenges to disease self-management.
        J Cyst Fibros. 2009; 8: 91-96
      1. Foundation CF. 2021 Patient Registry Annual Data Report. 2021 [accessed 2021 Nov 21].

        • Corey M
        • McLaughlin FJ
        • Williams M
        • Levison H.
        A comparison of survival, growth, and pulmonary function in patients with cystic fibrosis in Boston and Toronto.
        J Clin Epidemiol. 1988; 41: 583-591
        • Morin A.
        How exposure to the media can harm your teen's body image.
        Very Well Fam. 2022; ([accessed 2022 Sep 19])
        • Wilksch SM
        • O'Shea A
        • Ho P
        • Byrne S
        • Wade TD
        The relationship between social media use and disordered eating in young adolescents.
        Int J Eat Disord. 2020; 53: 96-106
        • Rodgers RF
        • Lombardo C
        • Cerolini S
        • Franko DL
        • Omori M
        • Fuller-Tyszkiewicz M
        • Linardon J
        • Courtet P
        • Guillaume S.
        The impact of the COVID-19 pandemic on eating disorder risk and symptoms.
        Int J Eat Disord. 2020; 53: 1166-1170
        • Borawska-Kowalczyk U
        • Sands D.
        Determinants of health-related quality of life in polish patients with CF- adolescents’ and parents’ perspectives.
        Dev Period Med. 2015; 19: 127-136
        • Helms SW
        • Christon LM
        • Dellon EP
        • Prinstein MJ.
        Patient and provider perspectives on communication about body image with adolescents and young adults with cystic fibrosis.
        J Pediatr Psychol. 2017; 42: 1040-1050
        • Pinquart M.
        Body image of children and adolescents with chronic illness: a meta-analytic comparison with healthy peers.
        Body Image. 2013; 10: 141-148
        • Abbott J
        • Conway S
        • Etherington C
        • Fitzjohn J
        • Gee L
        • Morton A
        • Musson H
        • Webb AK.
        Perceived body image and eating behavior in young adults with cystic fibrosis and their healthy peers.
        J Behav Med. 2000; 23: 501-517
        • Abbott J
        • Morton AM
        • Musson H
        • Conway SP
        • Etherington C
        • Gee L
        • Fitzjohn J
        • Webb AK.
        Nutritional status, perceived body image and eating behaviours in adults with cystic fibrosis.
        Clin Nutr. 2007; 26: 91-99
        • Walters S.
        Sex differences in weight perception and nutritional behaviour in adults with cystic fibrosis.
        J Hum Nutr Diet. 2001; 14: 83-91
        • Tierney S.
        Body image and cystic fibrosis : A critical review.
        Body Image. 2012; 9: 12-19
        • Conviser JH
        • Sheehan P
        • Mccolley SA
        Are children with chronic illnesses requiring dietary therapy at risk for disordered eating or eating disorders ?.
        A System Rev. 2018; (July 2017): 187-213
        • Pumariega AJ
        • Pursell J
        • Spock A
        • Jones JD.
        Eating disorders in adolescents with cystic fibrosis.
        J Am Acad Child Psychiatry. 1986; 25: 269-275
        • Shearer JE
        • Bryon M.
        The nature and prevalence of eating disorders and eating disturbance in adolescents with cystic fibrosis.
        J R Soc Med. 2004; 97 (Suppl): 36-42
        • Bryon M
        • Shearer J
        • Davies H.
        Eating disorders and disturbance in children and adolescents with cystic fibrosis.
        Child Heal Care. 2008; 37: 67-77
        • Heijerman HGM
        • McKone EF
        • Downey DG
        • Van Braeckel E
        • Rowe SM
        • Tullis E
        • Mall MA
        • Welter JJ
        • Ramsey BW
        • McKee CM
        • et al.
        Efficacy and safety of the elexacaftor plus tezacaftor plus ivacaftor combination regimen in people with cystic fibrosis homozygous for the F508del mutation: a double-blind, randomised, phase 3 trial.
        Lancet. 2019; 394: 1940-1948
        • Petersen MC
        • Begnel L
        • Wallendorf M
        • Litvin M.
        Effect of elexacaftor-tezacaftor-ivacaftor on body weight and metabolic parameters in adults with cystic fibrosis.
        J Cyst Fibros. 2022; 21: 265-271
        • Robinson AL
        • Boachie A
        • Lafrance GA.
        Assessment and treatment of pediatric eating disorders: a survey of physicians and psychologists.
        J Can Acad Child Adolesc Psychiatry. 2012; 21: 45-52
        • Quick V
        • Chang G.
        Health care provider's experiences, practices, and recommendations for interventions and screening of cystic fibrosis patients with disordered eating: A qualitative analysis.
        Chronic Illn. 2021; 17: 377-390
        • Kutney KA
        • Sandouk Z
        • Desimone M
        • Moheet A.
        Obesity in cystic fibrosis.
        J Clin Transl Endocrinol. 2021; 26100276
        • Fairburn CG
        • Beglin SJ.
        Assessment of eating disorders: interview or self-report questionnaire?.
        Int J Eat Disord. 1994; 16: 363-370
        • Wenninger K
        • Weiss C
        • Wahn U
        • Staab D.
        Body image in cystic fibrosis - Development of a brief diagnostic scale.
        J Behav Med. 2003; 26: 81-94
        • Randlesome K
        • Bryon M
        • Evangeli M.
        Developing a measure of eating attitudes and behaviours in cystic fibrosis.
        J Cyst Fibros. 2013; 12: 15-21
        • Castellani C
        • Duff AJA
        • Bell SC
        • Heijerman HGM
        • Munck A
        • Ratjen F
        • Sermet-Gaudelus I
        • Southern KW
        • Barben J
        • Flume PA
        • et al.
        ECFS best practice guidelines: the 2018 revision.
        J Cyst Fibros. 2018; 17: 153-178
        • Markowitz JT
        • Butler DA
        • Volkening LK
        • Antisdel JE
        • Anderson BJ
        • Laffel LMB.
        Brief screening tool for disordered eating in diabetes.
        Diabet Care. 2010; 33: 495-500