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Exploring the lived experience of triple modulator therapy for those with Cystic Fibrosis / BETHANY COPE

Swansea University Author: BETHANY COPE

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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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Published: Swansea, Wales, UK 2023
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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spelling v2 65360 2023-12-20 Exploring the lived experience of triple modulator therapy for those with Cystic Fibrosis a637289aa9a75e190f3a44ad829f47b2 BETHANY COPE BETHANY COPE true false 2023-12-20 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. E-Thesis Swansea, Wales, UK Cystic Fibrosis, Kaftrio, triple modulator therapy, lived experience lung function, quality-of-life, perceptions, psychological impact, future, adverse effects, relationships, carers, sustainability, appetite 14 11 2023 2023-11-14 A selection of content is redacted or is partially redacted from this thesis to protect sensitive and personal information. COLLEGE NANME COLLEGE CODE Swansea University McNarry, Melitta. and Mackintosh, Kelly. Master of Research MSc by Research 2023-12-20T15:16:54.2066553 2023-12-20T14:42:01.5768263 Faculty of Science and Engineering School of Engineering and Applied Sciences - Sport and Exercise Sciences BETHANY COPE 1 65360__29303__756e6e3c3c424713b47c7806384d6295.pdf 2023_Cope_BJ.final.65360.pdf 2023-12-20T15:14:40.7753354 Output 980659 application/pdf Version of Record true Copyright: The Author, Bethany J. Cope, 2023. true eng
title Exploring the lived experience of triple modulator therapy for those with Cystic Fibrosis
spellingShingle Exploring the lived experience of triple modulator therapy for those with Cystic Fibrosis
BETHANY COPE
title_short Exploring the lived experience of triple modulator therapy for those with Cystic Fibrosis
title_full Exploring the lived experience of triple modulator therapy for those with Cystic Fibrosis
title_fullStr Exploring the lived experience of triple modulator therapy for those with Cystic Fibrosis
title_full_unstemmed Exploring the lived experience of triple modulator therapy for those with Cystic Fibrosis
title_sort Exploring the lived experience of triple modulator therapy for those with Cystic Fibrosis
author_id_str_mv a637289aa9a75e190f3a44ad829f47b2
author_id_fullname_str_mv a637289aa9a75e190f3a44ad829f47b2_***_BETHANY COPE
author BETHANY COPE
author2 BETHANY COPE
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publishDate 2023
institution Swansea University
college_str Faculty of Science and Engineering
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hierarchy_top_id facultyofscienceandengineering
hierarchy_top_title Faculty of Science and Engineering
hierarchy_parent_id facultyofscienceandengineering
hierarchy_parent_title Faculty of Science and Engineering
department_str School of Engineering and Applied Sciences - Sport and Exercise Sciences{{{_:::_}}}Faculty of Science and Engineering{{{_:::_}}}School of Engineering and Applied Sciences - Sport and Exercise Sciences
document_store_str 1
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description 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.
published_date 2023-11-14T15:16:55Z
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score 11.037056

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