Parent-Reported Outcome Measures Evaluating Communication in Individuals with Rare Neurodevelopmental Disorders: A Systematic Review

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  • Author(s): Jacinta M. Saldaris (ORCID Jacinta M. Saldaris (ORCID 0000-0003-4638-6589); Jeremiah Ayalde (ORCID Jeremiah Ayalde (ORCID 0000-0002-3560-3106); Samali Kankanange (ORCID Samali Kankanange (ORCID 0009-0001-9966-0214); Jessica Keeley (ORCID Jessica Keeley (ORCID 0000-0001-9613-4713); Helen Leonard (ORCID Helen Leonard (ORCID 0000-0001-6405-5834); Peter Jacoby (ORCID Peter Jacoby (ORCID 0000-0001-5092-7697); Eric D. Marsh (ORCID Eric D. Marsh (ORCID 0000-0003-3264-0902); Tim A. Benke (ORCID Tim A. Benke (ORCID 0000-0002-6969-5061); Scott T. Demarest (ORCID Scott T. Demarest (ORCID 0000-0002-4544-3724); Jenny Downs (ORCID Jenny Downs (ORCID 0000-0001-7358-9037)
  • Language:
    English
  • Source:
    International Journal of Language & Communication Disorders. 2024 59(6):2528-2553.
  • Publication Date:
    2024
  • Document Type:
    Journal Articles
    Information Analyses
  • Additional Information
    • Availability:
      Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: [email protected]; Web site: https://www.wiley.com/en-us
    • Peer Reviewed:
      Y
    • Source:
      26
    • Sponsoring Agency:
      National Institute of Neurological Disorders and Stroke (NINDS) (DHHS/NIH)
    • Contract Number:
      U01NS114312
    • Subject Terms:
      Language Impairments; Communication Disorders; Neurodevelopmental Disorders; Evaluation Methods; Psychometrics; Communication Skills; Behavior Rating Scales
    • Subject Terms:
      Vineland Adaptive Behavior Scales
    • Accession Number:
      10.1111/1460-6984.13100
    • ISSN:
      1368-2822
      1460-6984
    • 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, PsychINFO, Web of Science, CINAHL Plus, Cochrane Library, ClinicalTrials.gov, the Australian New Zealand Clinical Trials Registry were searched from inception to August 2023. Methodological assessment of quality was completed using the COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN) checklist. Parent-reported measures used in observational studies and clinical trials were identified. Data on utility, reliability and validity for RNDDs were extracted. Main Contribution: Sixteen parent-reported communication measures were used in RNDD research, the Vineland Adaptive Behavior Scales being most commonly used. Validation data in RNDDs were identified for six of these measures. Limitations related to sample size or the scope of psychometric testing. Conclusions: Many communication measures have been used for RNDDs but there are few data validating their use. Valid and reliable methods of measuring communication in persons with RNDDs is a priority for future high-quality clinical trials.
    • Abstract:
      As Provided
    • Publication Date:
      2024
    • Accession Number:
      EJ1449115