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

Autor: McNeill M; School of Rehabilitation Therapy, Queen's University, Kingston, Canada., Noyek S; School of Rehabilitation Therapy, Queen's University, Kingston, Canada. s.noyek@queensu.ca., Engeda E; School of Rehabilitation Therapy, Queen's University, Kingston, Canada., Fayed N; School of Rehabilitation Therapy, Queen's University, Kingston, Canada.
Jazyk: angličtina
Zdroj: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation [Qual Life Res] 2021 Apr; Vol. 30 (4), pp. 983-995. Date of Electronic Publication: 2020 Nov 06.
DOI: 10.1007/s11136-020-02690-4
Abstrakt: 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.
Databáze: MEDLINE
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