Stakeholder engagement in the development of an upper extremity outcome measure for children with rare musculoskeletal conditions.

ABSTRACT:

Background

Upper extremity (UE) involvement is prevalent in 73% of individuals with arthrogryposis multiplex congenita (AMC), yet no AMC-specific outcome measure exists. When developing a measure specific to a population with a rare musculoskeletal condition, clinicians' and patients' perspectives and involvement is a crucial and necessary step. This study sought to determine the most clinically useful items for an outcome measure of UE function for children with AMC as defined by caregivers and clinicians.

Methods

To ensure the perspectives and needs of caregivers of children with AMC and clinicians were considered in the development of the UE measure for AMC, a Nominal Group technique (NGT) with caregivers of children with AMC (phase 1) followed by a three-round survey wit

SUBMITTER: Elfassy C 

PROVIDER: S-EPMC10408044 | biostudies-literature | 2023 Aug

REPOSITORIES: biostudies-literature