Parent-reported outcome measures evaluating communication in individuals with rare neurodevelopmental disorders: A systematic review.

ABSTRACT:

Background

Communication impairments are a leading concern for parent caregivers of individuals with rare neurodevelopmental disorders (RNDDs). Clinical trials of disease modifying therapies require valid and responsive outcome measures that are relevant to individuals with RNDDs. Identifying and evaluating current psychometric properties for communication measures is a critical step towards the selection and use of appropriate instruments.

Aims

This systematic review offers (1) a description of parent-reported communication measures and (2) evidence for their psychometric properties, in RNDDs.

Methods

The systematic review protocol was registered in the International Prospective Register of Systematic Reviews (PROSPERO; CRD42022334649). MEDLINE (Ovid), Embase, PsychI

SUBMITTER: Saldaris JM 

PROVIDER: S-EPMC11649302 | biostudies-literature | 2024 Nov-Dec

REPOSITORIES: biostudies-literature