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Patient-centred medicine
Original research
Systematic review of patient-reported measures of treatment burden in stroke
  1. Katie I Gallacher1,
  2. Terry Quinn2,
  3. Lisa Kidd3,
  4. David Eton4,5,
  5. Megan Dillon,
  6. Jennifer Elliot6,
  7. Natalie Johnston1,
  8. Patricia J Erwin7,
  9. Frances Mair1
  1. 1 General Practice and Primary Care, Institute of Health and Wellbeing, University of Glasgow, Glasgow, UK
  2. 2 Department of Academic Geriatric Medicine, Institute of Cardiovascular and Medical Sciences, University of Glasgow, Glasgow, UK
  3. 3 Nursing & Healthcare School, School of Medicine, Dentistry and Nursing, University of Glasgow, Glasgow, UK
  4. 4 Department of Health Sciences Research, Mayo Clinic, Rochester, Minnesota, USA
  5. 5 Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, Mayo Clinic, Rochester, Minnesota, USA
  6. 6 Stroke and Brain Imaging, Institute of Neuroscience and Psychology, University of Glasgow, Glasgow, UK
  7. 7 Mayo Medical Libraries, Mayo Clinic College of Medicine, Rochester, Minnesota, USA
  1. Correspondence to Dr Katie I Gallacher; katie.gallacher{at}glasgow.ac.uk

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.

  • stroke
  • treatment burden
  • patient-centred care
  • patient-reported measure
  • systematic review

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjopen-2019-029258

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    Footnotes

    • Contributors KIG, TJQ, DTE and FSM contributed to the design of the project. PJE created the search strategy and conducted the search. KIG, MD, TJQ, LK, DTE, JE, NJ and FSM screened papers, extracted and analysed data. KIG drafted the paper, and all authors reviewed drafts and approved the final version.

    • Funding This study was funded by the Stroke Association, Grant number: TSA 2017/01, TSA 2015/05.

    • Competing interests KIG and TJQ received funding from The Stroke Association to complete this work. TJQ received a grant from BMZ/Pfizer and payment from BMS/Pfizer and Bayer for educational activities outside the submitted work. FSM received payment for educational activities from Janssen outside the submitted work.

    • Patient consent for publication Not required.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement There are no data in this work.