Exploring the nature of perceived treatment burden: A study to compare treatment burden measures in adults with cystic fibrosis.

Altabee, Rana, Carr, Siobhan B., Abbott, Janice, Cameron, Rory ORCID: https://orcid.org/0000-0002-7442-0935, Office, Daniel, Matthews, Jessie, Simmonds, Nicholas, Cosgriff, Rebecca, Turner, David ORCID: https://orcid.org/0000-0002-1689-4147 and Whitty, Jennifer ORCID: https://orcid.org/0000-0002-5886-1933 (2022) Exploring the nature of perceived treatment burden: A study to compare treatment burden measures in adults with cystic fibrosis. NIHR Open Research, 2.

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Abstract

Background: 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: 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: 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 CFQR, 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: 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.

Item Type:	Article
Additional Information:	Article is published awaiting open peer-review. Extended data for ‘Exploring the nature of perceived treatment burden: a study to compare treatment burden measures in adults with cystic fibrosis’. https://doi.org/10.6084/m9.figshare.1953856014. Data are available under the terms of the Creative Commons Zero “No rights reserved” data waiver (CC0 Public domain dedication).
Faculty \ School:	Faculty of Medicine and Health Sciences > Norwich Medical School
UEA Research Groups:	Faculty of Medicine and Health Sciences > Research Groups > Health Economics Faculty of Medicine and Health Sciences > Research Groups > Health Services and Primary Care Faculty of Medicine and Health Sciences > Research Groups > Norwich Clinical Trials Unit Faculty of Medicine and Health Sciences > Research Groups > Public Health and Health Services Research (former - to 2023) Faculty of Medicine and Health Sciences > Research Centres > Norwich Institute for Healthy Aging Faculty of Medicine and Health Sciences > Research Groups > Respiratory and Airways Group Faculty of Medicine and Health Sciences > Research Centres > Population Health
Depositing User:	LivePure Connector
Date Deposited:	27 May 2022 08:33
Last Modified:	09 Oct 2024 08:30
URI:	https://ueaeprints.uea.ac.uk/id/eprint/85189
DOI:	10.3310/nihropenres.13260.1

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