A Systematic Review of International Guidance for Self-Report and Proxy Completion of Child-Specific Utility Instruments

Christine Mpundu-Kaambwa; Norma Bulamu; Lauren Lines; Gang Chen; Kim Dalziel; Nancy Devlin; Julie Ratcliffe; Quality of Life in Kids: Key Evidence for Decision Makers in Australia (QUOKKA) Project Team

doi:10.1016/j.jval.2022.04.1723

A Systematic Review of International Guidance for Self-Report and Proxy Completion of Child-Specific Utility Instruments

Value Health. 2022 Oct;25(10):1791-1804. doi: 10.1016/j.jval.2022.04.1723. Epub 2022 Jun 3.

Authors

Christine Mpundu-Kaambwa¹, Norma Bulamu², Lauren Lines³, Gang Chen⁴, Kim Dalziel⁵, Nancy Devlin⁶, Julie Ratcliffe³; Quality of Life in Kids: Key Evidence for Decision Makers in Australia (QUOKKA) Project Team

Affiliations

¹ Caring Futures Institute, Flinders University, Adelaide, South Australia, Australia. Electronic address: christine.mpundu-kaambwa@flinders.edu.au.
² Flinders Health and Medical Research Institute, Flinders University, Adelaide, South Australia, Australia.
³ Caring Futures Institute, Flinders University, Adelaide, South Australia, Australia.
⁴ Centre for Health Economics, Monash Business School, Monash University, Melbourne, Victoria, Australia.
⁵ Murdoch Children's Research Institute, Parkville, Melbourne, Victoria, Australia; Health Economics Unit, Melbourne School of Population and Global Health, University of Melbourne, Melbourne, Victoria, Australia.
⁶ Health Economics Unit, Melbourne School of Population and Global Health, University of Melbourne, Melbourne, Victoria, Australia.

PMID: 35667950
DOI: 10.1016/j.jval.2022.04.1723

Abstract

Objectives: This study aimed to identify and summarize published guidance and recommendations for child self- and proxy assessment of existing child-specific instruments of health-related quality of life (HRQoL) that are accompanied by utilities.

Methods: A total of 9 databases plus websites of (1) health technology assessment and health economics outcomes research organizations and (2) instrument developers were systematically searched. Studies were included if they reported guidance for child self- and proxy assessment for child populations (0-18 years old). Three reviewers independently screened titles, abstracts, and full-text reviews against the inclusion criteria. Key features of the guidance identified were summarized.

Results: A total of 19 studies met the inclusion criteria. In general, journal articles provided little guidance on child self- and proxy assessment, with the majority focused on instrument development and psychometric performance more broadly. Instrument developers' websites provided more guidance for child self- and proxy reports with specific guidance found for the EQ-5D-Y and the Pediatric Quality of Life Inventory. This guidance included the minimum age for self-report and mode of administration; recommended proxy types, age range of child for whom proxy report can be completed, and target population; and recall period. Websites of leading organizations provided general guidance on HRQoL evaluation in children but lacked specific guidance about self- and proxy completion.

Conclusions: EQ-5D-Y and Pediatric Quality of Life Inventory developers' websites provided the most comprehensive guidance for self-report and proxy report of their respective instruments. More evidence is required for developing best practice guidance on why, when, and how to use self- and proxy reports in assessing HRQoL in child populations.

Keywords: child; guidance; health-related quality of life; proxy; self-report; utility-based.

Publication types

Review
Systematic Review
Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Child
Child, Preschool
Humans
Infant
Infant, Newborn
Parents
Proxy*
Psychometrics
Quality of Life*
Self Report
Surveys and Questionnaires