Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021 Dec 8;11(12):e052049.
doi: 10.1136/bmjopen-2021-052049.

International guidelines for self-report and proxy completion of paediatric health-related quality of life measures: a protocol for a systematic review

Christine Mpundu-Kaambwa  1 , Gang Chen  2 , Kim Dalziel  3   4 , Nancy Devlin  3 , Julie Ratcliffe  5 ; Quality Of Life in Kids: Key evidence to strengthen decisions in Australia (QUOKKA) project team.
Affiliations

International guidelines for self-report and proxy completion of paediatric health-related quality of life measures: a protocol for a systematic review

Christine Mpundu-Kaambwa et al. BMJ Open. .

Abstract

Introduction: Measures of health-related quality of life (HRQoL), accompanied by the values (or utilities) required to estimate quality-adjusted life-years, are crucial for determining health benefits within economic evaluation and health technology assessment. Several generic and condition-specific measures or instruments of HRQoL, accompanied by values, currently exist for application with child populations. However, there is a lack of a structured summary of guidelines and recommendations for applying these measures in practice. This protocol describes a systematic review of guidelines and recommendations for child and proxy completion of child-specific measures of HRQoL. The aims of the review are to (1) identify and summarise published guidelines and recommendations for existing child-specific measures of HRQoL, (2) determine whether the identified guidelines and recommendations differ by instrument and child characteristics, (3) identify current gaps in these guidelines and recommendations and (4) identify best practices for child self and proxy assessment in paediatric HRQoL measurement for economic evaluation and health technology assessment.

Methods and analysis: The review will identify, collate and synthesise published guidelines and recommendations for existing child-specific utility measures of HRQoL. Electronic databases to be searched include the Cochrane Library, Medline, Scopus, Web of Science, EconLit, PsycINFO, CINAHL, Embase and Informit. The search will be extended to websites of (1) international organisations for health technology assessment, (2) regulation, health economics and HRQoL outcomes research and (3) instrument developers. Three reviewers will independently screen titles and abstracts against the inclusion criteria. A narrative synthesis will describe the key features of the guidelines identified.

Ethics and dissemination: Ethical approval is not required as the proposed systematic review will not use primary data. A paper of the systematic review will be submitted to a peer-reviewed journal for publication.

Prospero registration number: CRD42020207160.

Keywords: health economics; health policy; paediatrics.

PubMed Disclaimer

Conflict of interest statement

Competing interests: ND is a member of the EuroQol Group. All other authors declare no conflict of interest.

Similar articles

See all similar articles

Cited by

References

    1. Cesnales NI, Thyer BA. Health-Related Quality of Life Measures. In: Michalos AC, ed. Encyclopedia of quality of life and well-being research. Dordrecht. Springer Netherlands, 2014: 2809–14.
    1. WHO WHO. The world Health organization quality of life assessment (WHOQOL): position paper from the world health organization. Soc Sci Med 1995;41:1403–9. 10.1016/0277-9536(95)00112-k - DOI - PubMed
    1. Karimi M, Brazier J, Health BJ. Health, health-related quality of life, and quality of life: what is the difference? Pharmacoeconomics 2016;34:645–9. 10.1007/s40273-016-0389-9 - DOI - PubMed
    1. Wei Y, Speechley KN, Zou G, et al. The relationship between quality of life and health-related quality of life in young males with Duchenne muscular dystrophy. Dev Med Child Neurol 2017;59:1152–7. 10.1111/dmcn.13574 - DOI - PubMed
    1. Acquadro C, Berzon R, Dubois D, et al. Incorporating the patient's perspective into drug development and communication: an AD hoc Task force report of the patient-reported outcomes (pro) harmonization group meeting at the food and drug administration, February 16, 2001. Value Health 2003;6:522–31. 10.1046/j.1524-4733.2003.65309.x - DOI - PubMed

Publication types

LinkOut - more resources