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Quality of Life Research

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06-11-2020 | Review

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

Auteurs: Malcolm McNeill, Samantha Noyek, Eshetu Engeda, Nora Fayed

Gepubliceerd in: Quality of Life Research | Uitgave 4/2021

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.

vorige artikel A systematic review of self-care measures for adolescents with health needs

volgende artikel Using nationally representative percentiles to interpret PROMIS pediatric measures

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Titel: Assessing the engagement of children and families in selecting patient-reported outcomes (PROs) and developing their measures: a systematic review
Auteurs: Malcolm McNeill
Samantha Noyek
Eshetu Engeda
Nora Fayed
Publicatiedatum: 06-11-2020
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research / Uitgave 4/2021
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-020-02690-4

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