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

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 valida...

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Main Authors: Patricia J Erwin, Lisa Kidd, Terry Quinn, David Eton, Megan Dillon, Jennifer Elliot, Natalie Johnston, Frances Mair
Format: Article
Language:English
Published: BMJ Publishing Group 2019-09-01
Series:BMJ Open
Online Access:https://bmjopen.bmj.com/content/9/9/e029258.full
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author Patricia J Erwin
Lisa Kidd
Terry Quinn
David Eton
Megan Dillon
Jennifer Elliot
Natalie Johnston
Frances Mair
author_facet Patricia J Erwin
Lisa Kidd
Terry Quinn
David Eton
Megan Dillon
Jennifer Elliot
Natalie Johnston
Frances Mair
author_sort Patricia J Erwin
collection DOAJ
description 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.
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spelling doaj-art-e6fe09af02fc44e484a414c303eabdaa2025-08-20T01:54:18ZengBMJ Publishing GroupBMJ Open2044-60552019-09-019910.1136/bmjopen-2019-029258Systematic review of patient-reported measures of treatment burden in strokePatricia J Erwin0Lisa Kidd1Terry Quinn2David Eton3Megan DillonJennifer Elliot4Natalie Johnston5Frances Mair67 Mayo Medical Libraries, Mayo Clinic College of Medicine, Rochester, Minnesota, USANursing & Community Health, Glasgow Caledonian University, Glasgow, UKSchool of Cardiovascular and Medical Sciences, University of Glasgow College of Medical Veterinary and Life Sciences, Glasgow, UK4 Department of Health Sciences Research, Mayo Clinic, Rochester, Minnesota, USA6 Stroke and Brain Imaging, Institute of Neuroscience and Psychology, University of Glasgow, Glasgow, UK1 General Practice and Primary Care, Institute of Health and Wellbeing, University of Glasgow, Glasgow, UKCollege of Medical and Veterinary Life Sciences, University of Glasgow, Glasgow, UKObjectives 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.https://bmjopen.bmj.com/content/9/9/e029258.full
spellingShingle Patricia J Erwin
Lisa Kidd
Terry Quinn
David Eton
Megan Dillon
Jennifer Elliot
Natalie Johnston
Frances Mair
Systematic review of patient-reported measures of treatment burden in stroke
BMJ Open
title Systematic review of patient-reported measures of treatment burden in stroke
title_full Systematic review of patient-reported measures of treatment burden in stroke
title_fullStr Systematic review of patient-reported measures of treatment burden in stroke
title_full_unstemmed Systematic review of patient-reported measures of treatment burden in stroke
title_short Systematic review of patient-reported measures of treatment burden in stroke
title_sort systematic review of patient reported measures of treatment burden in stroke
url https://bmjopen.bmj.com/content/9/9/e029258.full
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