Engagement of Children, Families, and Care Providers in the Selection or Development of Patient Reported Outcomes

Abstract

BACKGROUND: The growing prevalence of chronic conditions in childhood calls for a child and family engaged approach to research. Engaging with children and families across the selection of outcomes and development of measures may be a promising way to optimize the impact of research that evaluates interventions by measuring what matters to these populations. The extent to which children and families have been engaged in outcome selection and development is unknown. OBJECTIVES: 1) identify the extent to which children and families are currently engaged in the selection of outcomes and development of measures and, 2) elicit the preferences of caregivers and complex care providers of children with medical complexity pertaining to the development of feeding and medical technology experience measures. METHODS: Manuscript 1. A systematic review assessed the extent to which children or families were involved in the selection or development of child-specific outcomes and measures using the IAP2 Spectrum of Public Participation. Manuscript 2. A cross-sectional survey design rated preferences for measurement development between stakeholder (parent versus service provider) groups using Mann-Whitney U and Chi-Square statistical tests. RESULTS: Manuscript 1. Seven studies focused on the selection of outcomes and 29 studies pertained to measure development; child or family engagement in outcomes research was focused at the ‘Involve’ level of the IAP2. Manuscript 2. A total of 39 caregivers and 33 complex care providers of CMC who completed the survey demonstrated non-significant differences in preference with the exception of measure length and transparency preferences. Both groups identified that measure results should be responsive to change instead of producing norm-referenced results. Caregivers expressed further preference to complete measures remotely (e.g. on smartphones) in lieu of during clinical appointments. CONCLUSIONS: Engaging children and families as equals in outcome selection and development is an unexplored area of research. Furthermore, eliciting family preferences is a feasible way to make decisions in the development of a measure.