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)

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: Quinn, Professor Terry and Kidd, Dr Lisa and Gallacher, Dr Katie and Mair, Professor Frances and Elliot, Dr Jennifer
• 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 > School of Cardiovascular & Metabolic Health; College of Medical Veterinary and Life Sciences > School of Health & Wellbeing > General Practice and Primary Care; College of Medical Veterinary and Life Sciences > School of Psychology & Neuroscience; 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 © 2019 The Authors
• First Published: First published in BMJ Open 9(9):e029258
• Publisher Policy: Reproduced under a Creative Commons license

Project Code	Award No	Project Name	Principal Investigator	Funder's Name	Funder Ref	Lead Dept
75366	2	Stroke Association Clinical Lectureship	Katie Gallacher	Stroke Association (STROKEAS)	TSA LECT 2017/01	IHW - GENERAL PRACTICE & PRIMARY CARE