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

Sean A. Aspinall, Kelly A. Mackintosh, Denise M. Hill, Bethany Cope and Melitta A. McNarry
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Sean A. Aspinall: Applied Sports, Technology, Exercise and Medicine (A-STEM) Research Centre, Faculty of Science and Engineering, Swansea University, Fabian Way, Swansea SA1 8EN, UK
Kelly A. Mackintosh: Applied Sports, Technology, Exercise and Medicine (A-STEM) Research Centre, Faculty of Science and Engineering, Swansea University, Fabian Way, Swansea SA1 8EN, UK
Denise M. Hill: Applied Sports, Technology, Exercise and Medicine (A-STEM) Research Centre, Faculty of Science and Engineering, Swansea University, Fabian Way, Swansea SA1 8EN, UK
Bethany Cope: Applied Sports, Technology, Exercise and Medicine (A-STEM) Research Centre, Faculty of Science and Engineering, Swansea University, Fabian Way, Swansea SA1 8EN, UK
Melitta A. McNarry: Applied Sports, Technology, Exercise and Medicine (A-STEM) Research Centre, Faculty of Science and Engineering, Swansea University, Fabian Way, Swansea SA1 8EN, UK

IJERPH, 2022, vol. 19, issue 10, 1-13

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 (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2022
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