P413 A qualitative exploration of the experiences of adults with cystic fibrosis unable to benefit from triple combination therapy

Mwelwa, M., Stirk, S., Hobson, C., Lewis, H. and Samuel, V. 2025. P413 A qualitative exploration of the experiences of adults with cystic fibrosis unable to benefit from triple combination therapy. Journal of Cystic Fibrosis 24 (Supp 1) , S200. 10.1016/j.jcf.2025.03.1297

Full text not available from this repository.

Abstract

Objectives: Elexacaftor/Tezacaftor/Ivacaftor (ETI) has transformed the lives of many people with Cystic Fibrosis (CF). However, there has been limited research into the experiences of those who are not able to benefit from ETI due to genetic factors. This study aimed to explore the experiences of this group and how they make sense of being in this situation. Methods: Seven adult CF participants (four males, three females) were recruited internationally through CF charities, online CF support groups, social media platforms, and one UK NHS CF service. Participants had an average age of 40 years, and their mean lung function was 65.57% (predicted). Data were gathered through semi-structured interviews and analysed using Interpretative Phenomenological Analysis (IPA). Results: The analysis revealed four themes. The first theme, ‘feeling forgotten’ emerged as a prominent experience, highlighting the challenges of being in a minority group. The second theme, ‘conflicted emotions’, explored the emotional impact of comparing one's situation with those who can benefit from ETI. The third theme, ‘fragility of hope’, captured the journey of hope experienced by participants, from hopefulness before the release of ETI, losing hope at finding out that they cannot benefit from ETI, and a renewed sense of hope for future treatments for their cohort. The final theme, ‘remaining on the old CF trajectory’, detailed the ongoing challenges of having CF, highlighting the significance of ETI and the coping strategies participants employ to navigate challenging circumstances. Conclusion: This study suggests that having CF, but not being able to benefit from ETI, has considerable psychological impact. It provided a much-needed nuanced perspective of the experiences of this group. The findings have several implications, including the need to inform people with CF not able to benefit from ETI about ongoing trials and research, potentially alleviating their sense of being forgotten.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Schools > Psychology
Publisher:	Elsevier
ISSN:	1569-1993
Date of First Compliant Deposit:	10 June 2025
Date of Acceptance:	3 June 2025
Last Modified:	18 Jun 2025 13:45
URI:	https://orca.cardiff.ac.uk/id/eprint/178957

Actions (repository staff only)

Edit Item