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Health economics
Protocol
Protocol for a systematic review of instruments for the assessment of quality of life and well-being in children and adolescents with cerebral palsy
  1. Christine Mpundu-Kaambwa1,
  2. Gang Chen2,
  3. Elisabeth Huynh1,
  4. Remo Russo3,4,
  5. Julie Ratcliffe1
  1. 1 Institute for Choice, University of South Australia Business School, University of South Australia, Adelaide, Australia
  2. 2 Centre for Health Economics, Monash Business School, Monash University, Melbourne, Australia
  3. 3 Faculty of Health Sciences, School of Medicine, Flinders University, Adelaide, Australia
  4. 4 Department of Paediatric Rehabilitation, Women’s and Children’s Hospital, Adelaide, Australia
  1. Correspondence to Ms Christine Mpundu-Kaambwa; christine.mpundu-kaambwa{at}unisa.edu.au

Abstract

Introduction Cerebral palsy is the most common cause of physical disability in children and adolescents and is associated with impairments that may reduce the quality of life (QOL) of this population. Patient-reported outcome measures (PROMs) can facilitate the assessment of the effect of disease and treatment on QOL, from a patient viewpoint. The purpose of this systematic review is to identify PROMs that are used to measure QOL and subjective well-being (SWB) outcomes in young people with cerebral palsy and to evaluate the suitability of these PROMs for application in economic evaluations within this population.

Methods and analysis MEDLINE, Scopus, the Cochrane Library, Web of Science Core Collection, EconLit, PsycINFO, CINAHL, EMBASE and Informit will be systematically searched from inception to date of search. Published peer-reviewed, English-language articles reporting PROMs measuring QOL or SWB outcomes in children and adolescents with cerebral palsy will be included. One reviewer will conduct the initial search and screen titles and abstracts for potentially eligible studies. The search will be performed in November 2017. To reduce the likelihood of reviewer selection bias, two other reviewers will independently screen a randomly selected subsample (10%) of the citations. Two reviewers will then retrieve full texts of potentially eligible studies and assess them against predefined inclusion criteria. The suitability of selected PROMs for use in economic evaluations of young people with cerebral palsy will be assessed using the International Society of Quality of Life Research recommended Minimum Standards and the Patient-Centered Outcomes and Comparative Effectiveness Research checklist. A narrative synthesis of extracted data will be presented including study descriptive data, PROMs measurement properties, settings in which they were applied and the valuation methods. Recommendations for practice on the selection of PROMs for use in economic evaluations of children and adolescents with cerebral palsy will be presented.

Ethics and dissemination Ethical approval is not required as the proposed systematic review will not use primary data. The results of this study will be widely disseminated through publication in a peer-reviewed journal and conference presentation(s).

Systematic review registration number International Prospective Register of Systematic Reviews number: CRD42016049746.

  • cerebral palsy
  • quality of life
  • instruments
  • child

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 and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

https://doi.org/10.1136/bmjopen-2017-015924

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    Footnotes

    • Contributors CM, JR and GC formulated the idea for the study. CM wrote the first draft and the co-authors (EH, GC, RR, JR) revised the protocol for important intellectual content. CM will act as a guarantor for the work.

    • Funding CM is supported by the Australian Government Research Training Program Scholarship.

    • Competing interests None declared.

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