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].

Autor:	Altabee R; Health Economics Group, Norwich Medical School, University of East Anglia, Norwich, NR4 7TJ, UK.; College of Applied Medical Sciences, King Saud bin Abdulaziz University for Health Sciences, Jeddah, 22384, Saudi Arabia., Carr SB; Department of Paediatric Respiratory Medicine, Royal Brompton & Harefield NHS Trust, London, SW3 6NP, UK.; National Heart and Lung Institute, Imperial College London, London, SW7 2BX, UK., Abbott J; School of Psychology, University of Central Lancashire, Preston, PR1 2HE, UK., Cameron R; Health Economics Group, Norwich Medical School, University of East Anglia, Norwich, NR4 7TJ, UK.; National Institute for Health Research (NIHR) Applied Research Collaboration (ARC) East of England (EoE), Cambridge, CB2 8AH, UK., Office D; Adult Cystic Fibrosis Centre, Royal Brompton & Harefield NHS Trust, London, SW3 6NP, UK., Matthews J; Adult Cystic Fibrosis Centre, Royal Brompton & Harefield NHS Trust, London, SW3 6NP, UK., Simmonds N; National Heart and Lung Institute, Imperial College London, London, SW7 2BX, UK.; Adult Cystic Fibrosis Centre, Royal Brompton & Harefield NHS Trust, London, SW3 6NP, UK., Cosgriff R; Cystic Fibrosis Trust, London, EC3N 1RE, UK., Turner D; Health Economics Group, Norwich Medical School, University of East Anglia, Norwich, NR4 7TJ, UK., Whitty J; Health Economics Group, Norwich Medical School, University of East Anglia, Norwich, NR4 7TJ, UK.; National Institute for Health Research (NIHR) Applied Research Collaboration (ARC) East of England (EoE), Cambridge, CB2 8AH, UK.
Jazyk:	angličtina
Zdroj:	NIHR open research [NIHR Open Res] 2022 May 09; Vol. 2, pp. 36.
DOI:	10.3310/nihropenres.13260.1
Abstrakt:	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 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: 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. Competing Interests: 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).
Databáze:	MEDLINE
Externí odkaz:	Zobrazit plný text záznamu