Systematic review of patient-reported measures of treatment burden in stroke

Gallacher, K. , Quinn, T. , Kidd, L. , Eton, D., Elliot, J., Johnston, N., Erwin, P. J. and Mair, F. (2019) Systematic review of patient-reported measures of treatment burden in stroke. BMJ Open, 9(9), e029258. (doi: 10.1136/bmjopen-2019-029258) (PMID:31533946) (PMCID:PMC6756342)

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Abstract

Objectives: Treatment burden is the workload of healthcare for people with long-term conditions (LTC) and its impact on well-being. A method of measurement is required to identify those experiencing high burden and to measure intervention efficacy. Our aim was to identify, examine and appraise validated patient-reported measures (PRMs) of treatment burden in stroke. Here, stroke serves as an exemplar LTC of older adults. Design: A systematic review of published studies that describe the development and validation of PRMs measuring treatment burden in stroke survivors. Data sources: We searched MEDLINE, Embase, CINAHL and PsycINFO electronic databases. Eligibility criteria: Studies published between January 2000 and 12 April 2019 inclusive, in English language. No restrictions were set based on clinical setting or geographical location. Data extraction and synthesis Screening, data extraction and quality appraisal were conducted by two independent reviewers. Content of the PRMs was compared with a published taxonomy of treatment burden. Quality appraisal was conducted using International Society for Quality of Life Research standards. Results: From 3993 articles, 6 relevant PRMs were identified: 3 were stroke specific: The Satisfaction with Stroke Care questionnaire; The Stroke Patient-Reported Outcome Measure and The Barriers to Physical Activity after Stroke scale. Three were generic but validated in stroke: The WHO Quality of Life-100; The Patient’s Questionnaire on Participation in Discharge Planning and The Chao Perception of Continuity scale. None comprehensively measured treatment burden. Examples of omitted burdens included developing coping strategies, managing finances and returning to driving. The most notable issue regarding quality appraisal was that three PRMs lacked any underpinning qualitative research relevant to the sample. Conclusion: There is a need to develop a comprehensive PRM of treatment burden for use in stroke, with potential for use in other older populations.

Item Type:Articles
Status:Published
Refereed:Yes
Glasgow Author(s) Enlighten ID:Kidd, Dr Lisa and Elliot, Dr Jennifer and Gallacher, Dr Katie and Mair, Professor Frances and Quinn, Dr Terry
Authors: Gallacher, K., Quinn, T., Kidd, L., Eton, D., Elliot, J., Johnston, N., Erwin, P. J., and Mair, F.
College/School:College of Medical Veterinary and Life Sciences > Institute of Cardiovascular and Medical Sciences
College of Medical Veterinary and Life Sciences > Institute of Health and Wellbeing > General Practice and Primary Care
College of Medical Veterinary and Life Sciences > Institute of Neuroscience and Psychology
College of Medical Veterinary and Life Sciences > School of Medicine, Dentistry & Nursing > Nursing and Health Care
Journal Name:BMJ Open
Publisher:BMJ Publishing Group
ISSN:2044-6055
ISSN (Online):2044-6055
Published Online:18 September 2019
Copyright Holders:Copyright © Authors (or their employers) 2019
First Published:First published in BMJ Open 9(9):e029258
Publisher Policy:Reproduced under a Creative Commons license

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Project CodeAward NoProject NamePrincipal InvestigatorFunder's NameFunder RefLead Dept
753662Stroke Association Clinical LectureshipKatie GallacherStroke Association (STROKEAS)TSA LECT 2017/01IHW - GENERAL PRACTICE & PRIMARY CARE