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Evaluating the Effect of Kaftrio on Perspectives of Health and Wellbeing in Individuals with Cystic Fibrosis

Sean Aspinall, Kelly Mackintosh Orcid Logo, Denise Hill Orcid Logo, Beth Cope, Melitta McNarry Orcid Logo

International Journal of Environmental Research and Public Health, Volume: 19, Issue: 10, Start page: 6114

Swansea University Authors: Sean Aspinall, Kelly Mackintosh Orcid Logo, Denise Hill Orcid Logo, Beth Cope, Melitta McNarry Orcid Logo

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DOI (Published version): 10.3390/ijerph19106114

Abstract

Background: Modulator therapy represents a significant step forward in CF care and is expected to have a significant impact on the health and mortality of many individuals with CF. Studies have predominantly explored the physiological effects of modulator therapy on clinical outcomes, with little co...

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Published in: International Journal of Environmental Research and Public Health
ISSN: 1660-4601
Published: MDPI AG 2022
Online Access: Check full text

URI: https://cronfa.swan.ac.uk/Record/cronfa60045
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Abstract: Background: Modulator therapy represents a significant step forward in CF care and is expected to have a significant impact on the health and mortality of many individuals with CF. Studies have predominantly explored the physiological effects of modulator therapy on clinical outcomes, with little consideration of the individual lived experience of modulator therapy among adults with Cystic Fibrosis.Methods: To explore this, semi-structured interviews were conducted with 12 individuals currently taking Kaftrio, which were subsequently thematically analysed.Results: Three overarching themes were identified: (i) positive perception of Kaftrio, (ii) negative perception of Kaftrio, and (iii) the relationships with the clinical team. The experience of modulator therapy should be recognised as being unique to the individual, with perceptions of illness, self-identity, and outcomes strongly dictating the lived experience.Conclusions: There is a consensus that, while for many, the quality of life is evidently increased through the use of Kaftrio, this is not without its own challenges. This highlights the need for both individuals with CF and their clinical teams to learn to navigate this new disease landscape.
Keywords: Chronic illness; lived experience; qualitative analysis; modulators; trikafta; semi-structured;self-identity; quality of life
College: College of Engineering
Funders: This work was supported by the Knowledge Economy Skills Scholarships (KESS). KESS is a pan-Wales higher-level skills initiative led by Bangor University on behalf of the HE sector in Wales. It is part funded by the Welsh Government’s European Social Fund (ESF) convergence programme for West Wales and the Valleys.
Issue: 10
Start Page: 6114