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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
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URI: https://cronfa.swan.ac.uk/Record/cronfa60045
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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.</abstract><type>Journal Article</type><journal>International Journal of Environmental Research and Public Health</journal><volume>19</volume><journalNumber>10</journalNumber><paginationStart>6114</paginationStart><paginationEnd/><publisher>MDPI AG</publisher><placeOfPublication/><isbnPrint/><isbnElectronic/><issnPrint/><issnElectronic>1660-4601</issnElectronic><keywords>Chronic illness; lived experience; qualitative analysis; modulators; trikafta; semi-structured;self-identity; quality of life</keywords><publishedDay>17</publishedDay><publishedMonth>5</publishedMonth><publishedYear>2022</publishedYear><publishedDate>2022-05-17</publishedDate><doi>10.3390/ijerph19106114</doi><url/><notes/><college>COLLEGE NANME</college><department>Science and Engineering - Faculty</department><CollegeCode>COLLEGE CODE</CollegeCode><DepartmentCode>FGSEN</DepartmentCode><institution>Swansea University</institution><apcterm/><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&#x2019;s European Social Fund (ESF) convergence programme for West Wales and the Valleys.</funders><projectreference/><lastEdited>2022-10-31T13:00:46.0193016</lastEdited><Created>2022-05-18T09:31:32.2332440</Created><path><level id="1">Faculty of Science and Engineering</level><level id="2">School of Aerospace, Civil, Electrical, General and Mechanical Engineering - Sport and Exercise Sciences</level></path><authors><author><firstname>Sean</firstname><surname>Aspinall</surname><order>1</order></author><author><firstname>Kelly</firstname><surname>Mackintosh</surname><orcid>0000-0003-0355-6357</orcid><order>2</order></author><author><firstname>Denise</firstname><surname>Hill</surname><orcid>0000-0001-8580-4048</orcid><order>3</order></author><author><firstname>Beth</firstname><surname>Cope</surname><order>4</order></author><author><firstname>Melitta</firstname><surname>McNarry</surname><orcid>0000-0003-0813-7477</orcid><order>5</order></author></authors><documents><document><filename>60045__24119__afae1ead4022430ba6ca1bad9beedadd.pdf</filename><originalFilename>60045.pdf</originalFilename><uploaded>2022-05-18T09:35:37.7671104</uploaded><type>Output</type><contentLength>346562</contentLength><contentType>application/pdf</contentType><version>Version of Record</version><cronfaStatus>true</cronfaStatus><documentNotes>&#xA9; 2022 by the authors.This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license</documentNotes><copyrightCorrect>true</copyrightCorrect><language>eng</language><licence>https://creativecommons.org/licenses/by/4.0/</licence></document></documents><OutputDurs/></rfc1807>
spelling 2022-10-31T13:00:46.0193016 v2 60045 2022-05-18 Evaluating the Effect of Kaftrio on Perspectives of Health and Wellbeing in Individuals with Cystic Fibrosis ca10b63acd93e4ef1daa85566a37ddbc Sean Aspinall Sean Aspinall true false bdb20e3f31bcccf95c7bc116070c4214 0000-0003-0355-6357 Kelly Mackintosh Kelly Mackintosh true false 9bca603dad273604f16acfb1178b1d83 0000-0001-8580-4048 Denise Hill Denise Hill true false 3cdb80ff717baa91aa49ed00da96a7fa Beth Cope Beth Cope true false 062f5697ff59f004bc8c713955988398 0000-0003-0813-7477 Melitta McNarry Melitta McNarry true false 2022-05-18 FGSEN 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. Journal Article International Journal of Environmental Research and Public Health 19 10 6114 MDPI AG 1660-4601 Chronic illness; lived experience; qualitative analysis; modulators; trikafta; semi-structured;self-identity; quality of life 17 5 2022 2022-05-17 10.3390/ijerph19106114 COLLEGE NANME Science and Engineering - Faculty COLLEGE CODE FGSEN Swansea University 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. 2022-10-31T13:00:46.0193016 2022-05-18T09:31:32.2332440 Faculty of Science and Engineering School of Aerospace, Civil, Electrical, General and Mechanical Engineering - Sport and Exercise Sciences Sean Aspinall 1 Kelly Mackintosh 0000-0003-0355-6357 2 Denise Hill 0000-0001-8580-4048 3 Beth Cope 4 Melitta McNarry 0000-0003-0813-7477 5 60045__24119__afae1ead4022430ba6ca1bad9beedadd.pdf 60045.pdf 2022-05-18T09:35:37.7671104 Output 346562 application/pdf Version of Record true © 2022 by the authors.This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license true eng https://creativecommons.org/licenses/by/4.0/
title Evaluating the Effect of Kaftrio on Perspectives of Health and Wellbeing in Individuals with Cystic Fibrosis
spellingShingle Evaluating the Effect of Kaftrio on Perspectives of Health and Wellbeing in Individuals with Cystic Fibrosis
Sean Aspinall
Kelly Mackintosh
Denise Hill
Beth Cope
Melitta McNarry
title_short Evaluating the Effect of Kaftrio on Perspectives of Health and Wellbeing in Individuals with Cystic Fibrosis
title_full Evaluating the Effect of Kaftrio on Perspectives of Health and Wellbeing in Individuals with Cystic Fibrosis
title_fullStr Evaluating the Effect of Kaftrio on Perspectives of Health and Wellbeing in Individuals with Cystic Fibrosis
title_full_unstemmed Evaluating the Effect of Kaftrio on Perspectives of Health and Wellbeing in Individuals with Cystic Fibrosis
title_sort Evaluating the Effect of Kaftrio on Perspectives of Health and Wellbeing in Individuals with Cystic Fibrosis
author_id_str_mv ca10b63acd93e4ef1daa85566a37ddbc
bdb20e3f31bcccf95c7bc116070c4214
9bca603dad273604f16acfb1178b1d83
3cdb80ff717baa91aa49ed00da96a7fa
062f5697ff59f004bc8c713955988398
author_id_fullname_str_mv ca10b63acd93e4ef1daa85566a37ddbc_***_Sean Aspinall
bdb20e3f31bcccf95c7bc116070c4214_***_Kelly Mackintosh
9bca603dad273604f16acfb1178b1d83_***_Denise Hill
3cdb80ff717baa91aa49ed00da96a7fa_***_Beth Cope
062f5697ff59f004bc8c713955988398_***_Melitta McNarry
author Sean Aspinall
Kelly Mackintosh
Denise Hill
Beth Cope
Melitta McNarry
author2 Sean Aspinall
Kelly Mackintosh
Denise Hill
Beth Cope
Melitta McNarry
format Journal article
container_title International Journal of Environmental Research and Public Health
container_volume 19
container_issue 10
container_start_page 6114
publishDate 2022
institution Swansea University
issn 1660-4601
doi_str_mv 10.3390/ijerph19106114
publisher MDPI AG
college_str Faculty of Science and Engineering
hierarchytype
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 Aerospace, Civil, Electrical, General and Mechanical Engineering - Sport and Exercise Sciences{{{_:::_}}}Faculty of Science and Engineering{{{_:::_}}}School of Aerospace, Civil, Electrical, General and Mechanical Engineering - Sport and Exercise Sciences
document_store_str 1
active_str 0
description 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.
published_date 2022-05-17T04:17:49Z
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