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Identifying specific needs in adult cystic fibrosis patients: a pilot study using a custom questionnaire

BACKGROUND: Adult patients with cystic fibrosis (CF) experience daily physical symptoms and disabilities that can be challenging to address for health care teams. METHODS: We sought to identify the most frequent topics that CF adults need to discuss with health care teams using a custom questionnair...

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Autores principales: Dury, Sandra, Perotin, Jeanne-Marie, Ravoninjatovo, Bruno, Llerena, Catherine, Ancel, Julien, Mulette, Pauline, Griffon, Muriel, Carré, Sophie, Perrin, Amélie, Lebargy, François, Deslée, Gaëtan, Launois, Claire
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8371823/
https://www.ncbi.nlm.nih.gov/pubmed/34404378
http://dx.doi.org/10.1186/s12890-021-01613-4
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author Dury, Sandra
Perotin, Jeanne-Marie
Ravoninjatovo, Bruno
Llerena, Catherine
Ancel, Julien
Mulette, Pauline
Griffon, Muriel
Carré, Sophie
Perrin, Amélie
Lebargy, François
Deslée, Gaëtan
Launois, Claire
author_facet Dury, Sandra
Perotin, Jeanne-Marie
Ravoninjatovo, Bruno
Llerena, Catherine
Ancel, Julien
Mulette, Pauline
Griffon, Muriel
Carré, Sophie
Perrin, Amélie
Lebargy, François
Deslée, Gaëtan
Launois, Claire
author_sort Dury, Sandra
collection PubMed
description BACKGROUND: Adult patients with cystic fibrosis (CF) experience daily physical symptoms and disabilities that can be challenging to address for health care teams. METHODS: We sought to identify the most frequent topics that CF adults need to discuss with health care teams using a custom questionnaire including 62 items. RESULTS: Fifty patients were included, 70% men, mean age 27.6 years, with a mean body mass index of 21.8 kg/m(2). Mean FEV(1)% was 64% of predicted value. Forty-two percent of patients selected at least one topic. The most frequently selected topics were fatigue (20%), professional or scholar worries (18%), procreation (16%), physical activities (16%) and evolution of CF disease (16%). Women were more frequently concerned about fatigue, procreation and profession/school. CONCLUSIONS: Using a custom questionnaire, we identified that CF adults express various unmet needs that extend beyond usual respiratory and nutritional concerns or treatment adherence. The interest of this questionnaire by health care team for improving therapeutic management of CF patients remains to be validated. Trial registration: The study was registered on ClinicalTrials.gov (NCT02924818) on 5th October 2016.
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spelling pubmed-83718232021-08-18 Identifying specific needs in adult cystic fibrosis patients: a pilot study using a custom questionnaire Dury, Sandra Perotin, Jeanne-Marie Ravoninjatovo, Bruno Llerena, Catherine Ancel, Julien Mulette, Pauline Griffon, Muriel Carré, Sophie Perrin, Amélie Lebargy, François Deslée, Gaëtan Launois, Claire BMC Pulm Med Research BACKGROUND: Adult patients with cystic fibrosis (CF) experience daily physical symptoms and disabilities that can be challenging to address for health care teams. METHODS: We sought to identify the most frequent topics that CF adults need to discuss with health care teams using a custom questionnaire including 62 items. RESULTS: Fifty patients were included, 70% men, mean age 27.6 years, with a mean body mass index of 21.8 kg/m(2). Mean FEV(1)% was 64% of predicted value. Forty-two percent of patients selected at least one topic. The most frequently selected topics were fatigue (20%), professional or scholar worries (18%), procreation (16%), physical activities (16%) and evolution of CF disease (16%). Women were more frequently concerned about fatigue, procreation and profession/school. CONCLUSIONS: Using a custom questionnaire, we identified that CF adults express various unmet needs that extend beyond usual respiratory and nutritional concerns or treatment adherence. The interest of this questionnaire by health care team for improving therapeutic management of CF patients remains to be validated. Trial registration: The study was registered on ClinicalTrials.gov (NCT02924818) on 5th October 2016. BioMed Central 2021-08-18 /pmc/articles/PMC8371823/ /pubmed/34404378 http://dx.doi.org/10.1186/s12890-021-01613-4 Text en © The Author(s) 2021 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
Dury, Sandra
Perotin, Jeanne-Marie
Ravoninjatovo, Bruno
Llerena, Catherine
Ancel, Julien
Mulette, Pauline
Griffon, Muriel
Carré, Sophie
Perrin, Amélie
Lebargy, François
Deslée, Gaëtan
Launois, Claire
Identifying specific needs in adult cystic fibrosis patients: a pilot study using a custom questionnaire
title Identifying specific needs in adult cystic fibrosis patients: a pilot study using a custom questionnaire
title_full Identifying specific needs in adult cystic fibrosis patients: a pilot study using a custom questionnaire
title_fullStr Identifying specific needs in adult cystic fibrosis patients: a pilot study using a custom questionnaire
title_full_unstemmed Identifying specific needs in adult cystic fibrosis patients: a pilot study using a custom questionnaire
title_short Identifying specific needs in adult cystic fibrosis patients: a pilot study using a custom questionnaire
title_sort identifying specific needs in adult cystic fibrosis patients: a pilot study using a custom questionnaire
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8371823/
https://www.ncbi.nlm.nih.gov/pubmed/34404378
http://dx.doi.org/10.1186/s12890-021-01613-4
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