Exploring the nature of perceived treatment burden: a study to compare treatment burden measures in adults with cystic fibrosis [version 1; peer review: 2 approved].
cystic fibrosis
patient-reported outcomes
treatment burden
Journal
NIHR open research
ISSN: 2633-4402
Titre abrégé: NIHR Open Res
Pays: England
ID NLM: 9918333281906676
Informations de publication
Date de publication:
09 May 2022
09 May 2022
Historique:
entrez:
1
3
2023
pubmed:
2
3
2023
medline:
2
3
2023
Statut:
ppublish
Résumé
Despite the importance of reducing treatment burden for people with cystic fibrosis (CF), it has not been fully understood as a concept. This study aims to quantify the treatment burden perceived by CF adults and explore the association between different validated treatment burden measures. This is a cross-sectional observational study of CF adults attending a single large UK adult center. Participants completed an online survey that contained three different treatment burden scales; CF Questionnaire-Revised (CFQ-R) subscale, CF Quality of Life (CFQoL) subscale, and the generic multimorbidity treatment burden questionnaire (MTBQ). Among 101 participants, the median reported treatment burden by the CFQ-R subscale was 55.5 (IQR 33.3 - 66.6), the CFQoL subscale was 66.6 (IQR 46.6 - 86.6), and the MTBQ reversed global score was 84.6 (IQR 73.1 - 92.3). No correlation was found between respondents' demographic or clinical variables and treatment burden measured via any of the three measures. All treatment burden measures showed correlations against each other. More treatments were associated with high treatment burden as measured by the CFQ-R, CFQoL subscales, and the MTBQ. However, longer treatment time and more complex treatment plans were correlated with high treatment burden as measured by the CFQ-R and CFQoL subscales, but not with the MTBQ. Treatment burden is a substantial issue in CF. Currently, the only available way to evaluate it is with the CF-specific quality of life measure treatment burden subscales (CFQ-R and CFQoL); both indicated that treatment burden increases with more treatments, longer treatment time, and more complex treatments.
Sections du résumé
Background
UNASSIGNED
Despite the importance of reducing treatment burden for people with cystic fibrosis (CF), it has not been fully understood as a concept. This study aims to quantify the treatment burden perceived by CF adults and explore the association between different validated treatment burden measures.
Methods
UNASSIGNED
This is a cross-sectional observational study of CF adults attending a single large UK adult center. Participants completed an online survey that contained three different treatment burden scales; CF Questionnaire-Revised (CFQ-R) subscale, CF Quality of Life (CFQoL) subscale, and the generic multimorbidity treatment burden questionnaire (MTBQ).
Results
UNASSIGNED
Among 101 participants, the median reported treatment burden by the CFQ-R subscale was 55.5 (IQR 33.3 - 66.6), the CFQoL subscale was 66.6 (IQR 46.6 - 86.6), and the MTBQ reversed global score was 84.6 (IQR 73.1 - 92.3). No correlation was found between respondents' demographic or clinical variables and treatment burden measured via any of the three measures. All treatment burden measures showed correlations against each other. More treatments were associated with high treatment burden as measured by the CFQ-R, CFQoL subscales, and the MTBQ. However, longer treatment time and more complex treatment plans were correlated with high treatment burden as measured by the CFQ-R and CFQoL subscales, but not with the MTBQ.
Conclusions
UNASSIGNED
Treatment burden is a substantial issue in CF. Currently, the only available way to evaluate it is with the CF-specific quality of life measure treatment burden subscales (CFQ-R and CFQoL); both indicated that treatment burden increases with more treatments, longer treatment time, and more complex treatments.
Identifiants
pubmed: 36855412
doi: 10.3310/nihropenres.13260.1
pmc: PMC7614250
mid: EMS164644
doi:
Banques de données
figshare
['10.6084/m9.figshare.19538560']
Types de publication
Journal Article
Langues
eng
Pagination
36Subventions
Organisme : Department of Health
ID : PB-PG-1217-20018
Pays : United Kingdom
Déclaration de conflit d'intérêts
Competing interests: RA, JA, RCo, DO, JM, RCa, DT, SC, NS and JW have no direct conflicts of interest to declare in relation to this study. Outside of the submitted work, SC has served on advisory boards and/or given educational lectures for which she or her institution have received fees for (Vertex, Chiesi, and Profile Pharma). NS has served on advisory boards and/or given educational lectures for which he has received consultancy fees (Vertex, Gilead, Chiesi, Zambon, Roche, and Menarini).
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