A qualitative exploration of the experiences of adults with cystic fibrosis unable to benefit from triple combination therapy

Dados Bibliográficos

ID4228239
AutoresMulongwe Mwelwa (0009-0003-1497-9918, Cardiff University), Christopher Hobson (0000-0001-6895-9670, Cardiff University), Steven Stirk (Cardiff and Vale University Health Board, Heath Park, UK), Heledd Lewis (0000-0003-4536-3596, Cardiff University), Viscount Samuel (0000-0002-4877-7818, Cardiff University)
Ano2025
Páginas13591053251369393-13591053251369393
Data de publicação2025-10-02
Peer ReviewedSim
Open AccessSim
TipoARTICLE
PeriódicoJournal of Health Psychology (JOURNAL)
Identificadores do periódicoISSN: 1359-1053 • E-ISSN: 1461-7277
EditoraSAGE Publications Inc (PUBLISHER)
DOI10.1177/13591053251369393
PMID41036720
OpenAlexW4414751096
IdiomaEN
Referências citadas29

Elexacaftor/Tezacaftor/Ivacaftor (ETI) is a highly effective modulator therapy that has transformed the lives of many people with Cystic Fibrosis (CF). However, limited research has explored the experiences of those not able to benefit from ETI due to genetic factors. Seven adults with CF participated in semi-structured interviews, and data were analysed using Interpretative Phenomenological Analysis (IPA). Four themes emerged: 'feeling forgotten', (the challenges of being in a minority group); 'conflicted emotions', (the emotional impact of comparing one's situation with others); 'fragility of hope', (the journey of hope experienced by participants); and 'remaining on the old CF trajectory', (the ongoing challenges of living with CF). The findings suggest a need for improved communication, psychological and peer support, inclusive media representation and opportunities for active involvement in research and advocacy. Implementing these interventions may help this group feel seen and supported, even as the CF landscape continues to evolve

Cystic Fibrosis Research Advances