Poster Presentation ESA-SRB-ANZOS 2025 in conjunction with ENSA

Understanding weight change perceptions in adults with cystic fibrosis treated with elexacaftor/tezacaftor/ivacaftor (129132)

Shanal Kumar 1 2 , Angela Matson 2
  1. School of Medicine, University of Queensland, QLD
  2. Adult Cystic Fibrosis Centre, The Prince Charles Hospital, Brisbane, QLD

Aims

Elexacaftor/Tezacaftor/ Ivacaftor (ETI) has transformed the management of cystic fibrosis (CF) leading to marked improvements in lung function and quality of life. However, significant and often rapid weight gain has been observed following ETI initiation with heterogenous responses among individuals.(1) This prospective qualitative study aimed to explore perceptions of weight changes in adults living with CF receiving the CF modulator therapy ETI.

 

Methods

A consumer survey was co-developed by the CF multidisciplinary team including dietetics and endocrinology, as part of a broader initiative to design the metabolic and diabetes care components of the Cystic Fibrosis Endocrine Service at The Prince Charles Hospital, Queensland. The survey was administered anonymously via QualtricsXTM and disseminated via social media channels and email to adults with CF attending our centre.

 

Results

A total of 72 adults with CF completed to the survey (~20% of our entire CF cohort). Most respondents were aged between 19-45 years with equal gender representation. 61% (44/72) were on ETI. Among those on ETI, 69% reported weight gain since therapy initiation with a median gain of 8.72kg. Perspectives varied, with some expressing satisfaction while others feeling very dissatisfied with the weight gain. Thirty-one percent reported that ETI-related weight gain had negatively impacted their health and an equal proportion felt motivated to lose weight. Of note, 60% reported active weight loss efforts through lifestyle modifications primarily through dietary interventions and increased physical activity. In total, three (3) individuals reported using pharmacotherapy for weight loss. Preferred supports included (i) tailored nutrition and exercise plan, (ii) access to smart/wearable technology to promote positive health behaviours and (iii) consistent recommendations. Few (8%) reported interest in anti-obesity clinical trials.

 

Conclusion

Weight gain associated with ETI is common and variably perceived among adults with CF and many are motivated to manage weight through lifestyle change.

  1. Gramegna A, Majo F, Alicandro G, Leonardi G, Cristiani L, Amati F, Contarini M, Aliberti S, Fiocchi AG, Blasi F. Heterogeneity of weight gain after initiation of Elexacaftor/Tezacaftor/Ivacaftor in people with cystic fibrosis. Respir Res. 2023 Jun 17;24(1):164. doi: 10.1186/s12931-023-02451-0. PMID: 37330504; PMCID: PMC10276411.