Identifying specific needs in adult cystic fibrosis patients: a pilot study using a custom questionnaire.
Cystic fibrosis
Fatigue
Needs
Quality of life
Questionnaire
Journal
BMC pulmonary medicine
ISSN: 1471-2466
Titre abrégé: BMC Pulm Med
Pays: England
ID NLM: 100968563
Informations de publication
Date de publication:
18 Aug 2021
18 Aug 2021
Historique:
received:
22
02
2021
accepted:
13
07
2021
entrez:
18
8
2021
pubmed:
19
8
2021
medline:
12
1
2022
Statut:
epublish
Résumé
Adult patients with cystic fibrosis (CF) experience daily physical symptoms and disabilities that can be challenging to address for health care teams. 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. Fifty patients were included, 70% men, mean age 27.6 years, with a mean body mass index of 21.8 kg/m 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. The study was registered on ClinicalTrials.gov (NCT02924818) on 5th October 2016.
Sections du résumé
BACKGROUND
BACKGROUND
Adult patients with cystic fibrosis (CF) experience daily physical symptoms and disabilities that can be challenging to address for health care teams.
METHODS
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
RESULTS
Fifty patients were included, 70% men, mean age 27.6 years, with a mean body mass index of 21.8 kg/m
CONCLUSIONS
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
BACKGROUND
The study was registered on ClinicalTrials.gov (NCT02924818) on 5th October 2016.
Identifiants
pubmed: 34404378
doi: 10.1186/s12890-021-01613-4
pii: 10.1186/s12890-021-01613-4
pmc: PMC8371823
doi:
Banques de données
ClinicalTrials.gov
['NCT02924818']
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
270Informations de copyright
© 2021. The Author(s).
Références
Chron Respir Dis. 2012;9(4):241-9
pubmed: 23129802
Food Nutr Res. 2011;55:
pubmed: 22110412
BMJ Support Palliat Care. 2019 Aug 31;:
pubmed: 31473650
Arch Bronconeumol. 2007 Apr;43(4):205-11
pubmed: 17397584
J Cyst Fibros. 2019 Sep;18(5):734-736
pubmed: 30935840
Patient Educ Couns. 2018 Oct;101(10):1865-1870
pubmed: 29910140
J Gastroenterol Hepatol. 2014 Dec;29(12):1954-62
pubmed: 25238538
J Pain Symptom Manage. 2008 Apr;35(4):372-80
pubmed: 18215497
Thorax. 2002 Jul;57(7):596-601
pubmed: 12096202
Chest. 2007 Jul;132(1):231-7
pubmed: 17625085
West J Nurs Res. 2019 Oct;41(10):1448-1464
pubmed: 31267835
J Cyst Fibros. 2007 Nov 30;6(6):411-6
pubmed: 17452026
Respir Med. 1991 Sep;85(5):389-92
pubmed: 1759003
J Cyst Fibros. 2003 Jun;2(2):97-104
pubmed: 15463857
Lancet. 2016 Nov 19;388(10059):2519-2531
pubmed: 27140670
J Cyst Fibros. 2019 Sep;18(5):671-676
pubmed: 30795973
Diabetes Obes Metab. 2010 Oct;12(10):858-64
pubmed: 20920037
Ann Am Thorac Soc. 2016 Jul;13(7):1173-9
pubmed: 27078236
J Cyst Fibros. 2003 Mar;2(1):29-34
pubmed: 15463843
J Cyst Fibros. 2018 Jan;17(1):64-70
pubmed: 28866451
J Cyst Fibros. 2018 May;17(3):368-374
pubmed: 29606526
Thorax. 2014 Dec;69(12):1090-7
pubmed: 25246663
Occup Med (Lond). 2014 Mar;64(2):87-94
pubmed: 24368524