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

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Title: Parent-Reported Outcome Measures Evaluating Communication in Individuals with Rare Neurodevelopmental Disorders: A Systematic Review
Language: English
Authors: Jacinta M. Saldaris (ORCID 0000-0003-4638-6589), Jeremiah Ayalde (ORCID 0000-0002-3560-3106), Samali Kankanange (ORCID 0009-0001-9966-0214), Jessica Keeley (ORCID 0000-0001-9613-4713), Helen Leonard (ORCID 0000-0001-6405-5834), Peter Jacoby (ORCID 0000-0001-5092-7697), Eric D. Marsh (ORCID 0000-0003-3264-0902), Tim A. Benke (ORCID 0000-0002-6969-5061), Scott T. Demarest (ORCID 0000-0002-4544-3724), Jenny Downs (ORCID 0000-0001-7358-9037)
Source: International Journal of Language & Communication Disorders. 2024 59(6):2528-2553.
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 26
Publication Date: 2024
Sponsoring Agency: National Institute of Neurological Disorders and Stroke (NINDS) (DHHS/NIH)
Contract Number: U01NS114312
Document Type: Journal Articles
Information Analyses
Descriptors: Language Impairments, Communication Disorders, Neurodevelopmental Disorders, Evaluation Methods, Psychometrics, Communication Skills, Behavior Rating Scales
Assessment and Survey Identifiers: Vineland Adaptive Behavior Scales
DOI: 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.
Abstractor: As Provided
Entry Date: 2024
Accession Number: EJ1449115
Database: ERIC
FullText Text:
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  Data: Parent-Reported Outcome Measures Evaluating Communication in Individuals with Rare Neurodevelopmental Disorders: A Systematic Review
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  Data: <searchLink fieldCode="AR" term="%22Jacinta+M%2E+Saldaris%22">Jacinta M. Saldaris</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0003-4638-6589">0000-0003-4638-6589</externalLink>)<br /><searchLink fieldCode="AR" term="%22Jeremiah+Ayalde%22">Jeremiah Ayalde</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-3560-3106">0000-0002-3560-3106</externalLink>)<br /><searchLink fieldCode="AR" term="%22Samali+Kankanange%22">Samali Kankanange</searchLink> (ORCID <externalLink term="https://orcid.org/0009-0001-9966-0214">0009-0001-9966-0214</externalLink>)<br /><searchLink fieldCode="AR" term="%22Jessica+Keeley%22">Jessica Keeley</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-9613-4713">0000-0001-9613-4713</externalLink>)<br /><searchLink fieldCode="AR" term="%22Helen+Leonard%22">Helen Leonard</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-6405-5834">0000-0001-6405-5834</externalLink>)<br /><searchLink fieldCode="AR" term="%22Peter+Jacoby%22">Peter Jacoby</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-5092-7697">0000-0001-5092-7697</externalLink>)<br /><searchLink fieldCode="AR" term="%22Eric+D%2E+Marsh%22">Eric D. Marsh</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0003-3264-0902">0000-0003-3264-0902</externalLink>)<br /><searchLink fieldCode="AR" term="%22Tim+A%2E+Benke%22">Tim A. Benke</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-6969-5061">0000-0002-6969-5061</externalLink>)<br /><searchLink fieldCode="AR" term="%22Scott+T%2E+Demarest%22">Scott T. Demarest</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-4544-3724">0000-0002-4544-3724</externalLink>)<br /><searchLink fieldCode="AR" term="%22Jenny+Downs%22">Jenny Downs</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-7358-9037">0000-0001-7358-9037</externalLink>)
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  Data: <searchLink fieldCode="SO" term="%22International+Journal+of+Language+%26+Communication+Disorders%22"><i>International Journal of Language & Communication Disorders</i></searchLink>. 2024 59(6):2528-2553.
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  Data: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
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  Data: 26
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  Data: 2024
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  Data: National Institute of Neurological Disorders and Stroke (NINDS) (DHHS/NIH)
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  Data: Journal Articles<br />Information Analyses
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  Data: <searchLink fieldCode="DE" term="%22Language+Impairments%22">Language Impairments</searchLink><br /><searchLink fieldCode="DE" term="%22Communication+Disorders%22">Communication Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Neurodevelopmental+Disorders%22">Neurodevelopmental Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Evaluation+Methods%22">Evaluation Methods</searchLink><br /><searchLink fieldCode="DE" term="%22Psychometrics%22">Psychometrics</searchLink><br /><searchLink fieldCode="DE" term="%22Communication+Skills%22">Communication Skills</searchLink><br /><searchLink fieldCode="DE" term="%22Behavior+Rating+Scales%22">Behavior Rating Scales</searchLink>
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  Data: 10.1111/1460-6984.13100
– Name: ISSN
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  Data: 1368-2822<br />1460-6984
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: 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.
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