E-Thesis 84 views 45 downloads
Exploring the lived experience of triple modulator therapy for those with Cystic Fibrosis / BETHANY COPE
Swansea University Author: BETHANY COPE
Abstract
Introduction: CF is an incurable, multi-system disease, severely impacting quality-of-life. Kaftrio is a recently approved triple-combination therapy reported to lead to significant improvements in lung function and health-related quality-of-life. The longevity of these benefits and patient’s percep...
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Swansea, Wales, UK
2023
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| Institution: | Swansea University |
| Degree level: | Master of Research |
| Degree name: | MSc by Research |
| Supervisor: | McNarry, Melitta. and Mackintosh, Kelly. |
| URI: | https://cronfa.swan.ac.uk/Record/cronfa65360 |
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| Abstract: |
Introduction: CF is an incurable, multi-system disease, severely impacting quality-of-life. Kaftrio is a recently approved triple-combination therapy reported to lead to significant improvements in lung function and health-related quality-of-life. The longevity of these benefits and patient’s perceptions and experiences related to them remain to be elucidated, especially in those aged 6 to 11 years for whom the therapy was more recently licenced. The aim of this thesis was to investigate the effects of Kaftrio on the lived experience of those with CF. Methods: The current thesis comprises of two studies: study one involved six children with CF (9.3±1.7 yrs, 3 girls) and eight carers; study two involved nine adults with CF (32.9±6.6 yrs, 7 females). Individual semi-structured interviews were conducted to explore their perceptions and experiences of Kaftrio alongside either the initial impacts of Kaftrio (children) or the impacts following one year (adults). An inductive thematic analysis was carried out. Results: Four overarching themes were identified amongst the children and carers: i) perceptions of Kaftrio; ii) benefits, included improved quality-of-life, lung function, psychological impact and impact on future; iii) negatives, included adverse effects; iv) relationships with carers. Five dimensions were identified amongst the adults: i) perceptions of Kaftrio; ii) benefits, included increased quality-of-life, lung function and impact on the future; iii) negatives, included side effects, sustainability and appetite; iv) psychological impact, ranged from improved psychological well-being to a negative impact on emotions; v) relationships. Discussion: Overall, Kaftrio was very beneficial to the lived experience of those with CF and their carers. These positives were perceived to greatly outweigh the negatives associated with Kaftrio and did not lead to discontinuation. The current findings highlight the need for further study, specifically regarding psychological well-being among children with CF and the impact of Kaftrio in the long-term for those aged <12 years. |
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| Item Description: |
A selection of content is redacted or is partially redacted from this thesis to protect sensitive and personal information. |
| Keywords: |
Cystic Fibrosis, Kaftrio, triple modulator therapy, lived experience lung function, quality-of-life, perceptions, psychological impact, future, adverse effects, relationships, carers, sustainability, appetite |
| College: |
Faculty of Science and Engineering |