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. 2021 Apr;30(4):983-995.
doi: 10.1007/s11136-020-02690-4. Epub 2020 Nov 6.

Assessing the engagement of children and families in selecting patient-reported outcomes (PROs) and developing their measures: a systematic review

Malcolm McNeill  1 , Samantha Noyek  2 , Eshetu Engeda  1 , Nora Fayed  1
Affiliations

Assessing the engagement of children and families in selecting patient-reported outcomes (PROs) and developing their measures: a systematic review

Malcolm McNeill et al. Qual Life Res. 2021 Apr.

Abstract

Purpose: To assess child and family engagement in the selection of patient-reported outcomes for clinical studies/clinical settings and development of patient-reported outcome measures (PROMs)/patient-reported experience measures (PREMs) across the pediatric literature.

Methods: Databases were reviewed: EMBASE, MEDLINE, and PsycINFO. Articles published from December 2009 to September 2018 pertaining to the selection of outcomes or development of PROMs/PREMs for children or families were included. The International Association for Public Participation (IAP2) Spectrum of Public Participation was used to classify levels of engagement across each article; IAP2 plots engagement on a spectrum across five stages (from minimal to most engagement): Inform, Consult, Involve, Collaborate, and Empower.

Results: 9019 non-duplicate articles were screened; 36 articles met inclusion criteria, seven studies focused on the selection of outcomes, and 29 studies pertained to PROM/PREM development. Twenty-three articles adhered to 'Involve' level of engagement. Four articles were categorized as 'Collaborate,' seven articles were classified as 'Consult,' and three articles were categorized as 'Inform'.

Conclusion: Children and families were sparsely engaged as co-conductors or equal partners in the selection or development of PRO research; involvement remained on the mid-low end of the IAP2 Spectrum. Engaging with children and families as collaborators can improve the patient-centredness, rigour, and applicability of PROM/PREM research.

Keywords: Child; Experience measure; Family; Outcome measure; Patient engagement; Patient report.

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