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

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.