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Lived experiences of individuals with cystic fibrosis on CFTR-modulators
BACKGROUND: CFTR-modulators are a category of drugs that facilitate trafficking and opening of the abnormal CFTR protein in individuals with cystic fibrosis (CF) who have certain genetic mutations. Clinical trial data show that individuals taking CFTR-modulators have increased or stable lung functio...
Autores principales: | , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
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BioMed Central
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8781590/ https://www.ncbi.nlm.nih.gov/pubmed/35062937 http://dx.doi.org/10.1186/s12890-022-01825-2 |
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author | Page, Annelise Goldenberg, Aaron Matthews, Anne L. |
author_facet | Page, Annelise Goldenberg, Aaron Matthews, Anne L. |
author_sort | Page, Annelise |
collection | PubMed |
description | BACKGROUND: CFTR-modulators are a category of drugs that facilitate trafficking and opening of the abnormal CFTR protein in individuals with cystic fibrosis (CF) who have certain genetic mutations. Clinical trial data show that individuals taking CFTR-modulators have increased or stable lung function (FEV(1)) as well as reduced frequency of pulmonary exacerbations. There are no data on whether CFTR-modulators influence psychosocial aspects of the lives of individuals with CF. The purpose of this qualitative study was to explore how the introduction of CFTR-modulators has affected individuals’ lived experiences outside of clinical health variables; that is, to explore whether there is a relationship between using CFTR-modulator drugs and the psychological and social aspects of the lives of individuals with CF, including: career, relationships, family planning and psychological functioning. METHODS: Eight men and women with CF ages 24–32, with a history of taking any approved CFTR-modulator for at least six months, were recruited from an adult CF center. A semi-structured interview guide was used to interview the participants. The data were coded using a grounded theory approach with an iterative methodology. RESULTS: Four themes emerged from the data: stability, identity, potentiality, and hope. CONCLUSIONS: Although these themes cannot be generalized to all individuals with CF, this study provides preliminary data for how CFTR-modulators may influence an individual with CF’s outlook on life and that these individuals are feeling hopeful about the future. |
format | Online Article Text |
id | pubmed-8781590 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-87815902022-01-24 Lived experiences of individuals with cystic fibrosis on CFTR-modulators Page, Annelise Goldenberg, Aaron Matthews, Anne L. BMC Pulm Med Research Article BACKGROUND: CFTR-modulators are a category of drugs that facilitate trafficking and opening of the abnormal CFTR protein in individuals with cystic fibrosis (CF) who have certain genetic mutations. Clinical trial data show that individuals taking CFTR-modulators have increased or stable lung function (FEV(1)) as well as reduced frequency of pulmonary exacerbations. There are no data on whether CFTR-modulators influence psychosocial aspects of the lives of individuals with CF. The purpose of this qualitative study was to explore how the introduction of CFTR-modulators has affected individuals’ lived experiences outside of clinical health variables; that is, to explore whether there is a relationship between using CFTR-modulator drugs and the psychological and social aspects of the lives of individuals with CF, including: career, relationships, family planning and psychological functioning. METHODS: Eight men and women with CF ages 24–32, with a history of taking any approved CFTR-modulator for at least six months, were recruited from an adult CF center. A semi-structured interview guide was used to interview the participants. The data were coded using a grounded theory approach with an iterative methodology. RESULTS: Four themes emerged from the data: stability, identity, potentiality, and hope. CONCLUSIONS: Although these themes cannot be generalized to all individuals with CF, this study provides preliminary data for how CFTR-modulators may influence an individual with CF’s outlook on life and that these individuals are feeling hopeful about the future. BioMed Central 2022-01-21 /pmc/articles/PMC8781590/ /pubmed/35062937 http://dx.doi.org/10.1186/s12890-022-01825-2 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
spellingShingle | Research Article Page, Annelise Goldenberg, Aaron Matthews, Anne L. Lived experiences of individuals with cystic fibrosis on CFTR-modulators |
title | Lived experiences of individuals with cystic fibrosis on CFTR-modulators |
title_full | Lived experiences of individuals with cystic fibrosis on CFTR-modulators |
title_fullStr | Lived experiences of individuals with cystic fibrosis on CFTR-modulators |
title_full_unstemmed | Lived experiences of individuals with cystic fibrosis on CFTR-modulators |
title_short | Lived experiences of individuals with cystic fibrosis on CFTR-modulators |
title_sort | lived experiences of individuals with cystic fibrosis on cftr-modulators |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8781590/ https://www.ncbi.nlm.nih.gov/pubmed/35062937 http://dx.doi.org/10.1186/s12890-022-01825-2 |
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