Family-provider consensus outcomes for children with medical complexity

Title

Family-provider consensus outcomes for children with medical complexity

Creator

Fayed N; Guttmann A; Chiu A; Gardecki M; Orkin J; Hamid JS; Major N; Lim A; Cohen E

Identifier

Publisher

Developmental Medicine & Child Neurology

Date

2018

Description

Aim To describe the process of obtaining consensus of outcome priorities between families of children with medical complexity (CMC) and their healthcare providers (HCPs) for the purpose of evaluating changes to service delivery. Method The consensus of outcomes involved surveying families of CMC and HCPs and an in-person consensus meeting. Priorities were obtained from the survey using a stratified ranking approach ensuring equal representation among unequally sized subgroups. An in-person meeting was held using the survey results to inform Delphi voting. Results Families of CMC (n=40) and HCPs (n=74) responded to the survey. Consensus generated three main target areas (child health, family health, experience of care) covered by 15 specific outcomes needed to evaluate care. Differences between family and HCP perceptions of importance were found for child self-care, play, social skills, and recreation as well as emotional health (for both parent and child) outcomes. Interpretation Families of CMC and HCPs identified common priorities for outcome evaluation of CMC initiatives. Outcomes that differ in importance between families of CMC and HCPs should be studied further. What this paper adds Families of children with medical complexity and their providers can reach consensus on important outcomes. Stratifying subgroups ensures diverse representation, which is important to outcome prioritization.

Citation List Month

February 2019 List

Collection

Citation

Fayed N; Guttmann A; Chiu A; Gardecki M; Orkin J; Hamid JS; Major N; Lim A; Cohen E, “Family-provider consensus outcomes for children with medical complexity,” Pediatric Palliative Care Library, accessed October 24, 2021, https://pedpalascnetlibrary.omeka.net/items/show/16043.

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