Development of a proxy-reported scale to assess motor function in infants and young children with early-onset neuromuscular disorders.

ABSTRACT:

Aim

To develop a novel proxy-reported scale of motor function in infants and young children with early-onset neuromuscular disorders (NMD), entitled the Proxy Motor Outcome Measure (PMOM).

Design

A mixed method design was employed, applying both qualitative and quantitative research.

Methods

A framework technique using sensitivity analyses guided the development of the most appropriate and relevant subset of items, modelled after 30 neuromuscular disease instruments/scales. The PMOM was designed based on semi-structured interviews with 16 proxies; a focus group of 11 experts in neuromuscular diseases and scale development, 10 of whom also gave quantitative data using a two-round Delphi method survey; and cognitive interviews with five proxies. These processes were con

SUBMITTER: Capella-Peris C 

PROVIDER: S-EPMC7902331 | biostudies-literature | 2021 Mar

REPOSITORIES: biostudies-literature