Jacinta M. Saldaris, Jeremiah Ayalde, Samali Kankanange, Jessica Keeley, Helen Leonard, Peter Jacoby, Eric D. Marsh, Tim A. Benke, Scott T. Demarest, Jenny Downs
{"title":"评估罕见神经发育障碍患者沟通能力的家长报告结果：系统综述。","authors":"Jacinta M. Saldaris, Jeremiah Ayalde, Samali Kankanange, Jessica Keeley, Helen Leonard, Peter Jacoby, Eric D. Marsh, Tim A. Benke, Scott T. Demarest, Jenny Downs","doi":"10.1111/1460-6984.13100","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Background</h3>\n \n <p>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.</p>\n </section>\n \n <section>\n \n <h3> Aims</h3>\n \n <p>This systematic review offers (1) a description of parent-reported communication measures and (2) evidence for their psychometric properties, in RNDDs.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>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.</p>\n </section>\n \n <section>\n \n <h3> Main Contribution</h3>\n \n <p>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.</p>\n </section>\n \n <section>\n \n <h3> Conclusions</h3>\n \n <p>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.</p>\n </section>\n \n <section>\n \n <h3> WHAT THIS PAPER ADDS</h3>\n \n <section>\n \n <h3> What is already known on the subject</h3>\n \n <div>\n <ul>\n \n <li>Communication is a critical domain for families with a child with a rare neurodevelopmental disorder (RNDD). Validated outcome measures are essential for accurate evaluation and interpretation of responses to treatments in clinical trials.</li>\n </ul>\n </div>\n </section>\n \n <section>\n \n <h3> What this paper adds to existing knowledge</h3>\n \n <div>\n <ul>\n \n <li>We identified 16 parent-reported communication measures that have been used with RNDDs, but only six measures had validation data for at least one RNDD. High quality evidence is accumulating, with all validation studies in this review published between 2020 to 2023. Modifications of existing measures may be required to assess communication for RNDDs.</li>\n </ul>\n </div>\n </section>\n \n <section>\n \n <h3> What are the clinical implications of this work?</h3>\n \n <div>\n <ul>\n \n <li>This systematic review catalogues the available psychometric data for communication measures and indicates an ongoing need for new validation studies to ensure they are fit-for-purpose for upcoming clinical trials in RNDDs. This review will inform the selection of communication measures for clinical trials and research studies.</li>\n </ul>\n </div>\n </section>\n </section>\n </div>","PeriodicalId":49182,"journal":{"name":"International Journal of Language & Communication Disorders","volume":"59 6","pages":"2528-2553"},"PeriodicalIF":1.5000,"publicationDate":"2024-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/1460-6984.13100","citationCount":"0","resultStr":"{\"title\":\"Parent-reported outcome measures evaluating communication in individuals with rare neurodevelopmental disorders: A systematic review\",\"authors\":\"Jacinta M. Saldaris, Jeremiah Ayalde, Samali Kankanange, Jessica Keeley, Helen Leonard, Peter Jacoby, Eric D. Marsh, Tim A. Benke, Scott T. Demarest, Jenny Downs\",\"doi\":\"10.1111/1460-6984.13100\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div>\\n \\n \\n <section>\\n \\n <h3> Background</h3>\\n \\n <p>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.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Aims</h3>\\n \\n <p>This systematic review offers (1) a description of parent-reported communication measures and (2) evidence for their psychometric properties, in RNDDs.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Methods</h3>\\n \\n <p>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.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Main Contribution</h3>\\n \\n <p>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.</p>\\n </section>\\n \\n <section>\\n \\n <h3> Conclusions</h3>\\n \\n <p>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.</p>\\n </section>\\n \\n <section>\\n \\n <h3> WHAT THIS PAPER ADDS</h3>\\n \\n <section>\\n \\n <h3> What is already known on the subject</h3>\\n \\n <div>\\n <ul>\\n \\n <li>Communication is a critical domain for families with a child with a rare neurodevelopmental disorder (RNDD). Validated outcome measures are essential for accurate evaluation and interpretation of responses to treatments in clinical trials.</li>\\n </ul>\\n </div>\\n </section>\\n \\n <section>\\n \\n <h3> What this paper adds to existing knowledge</h3>\\n \\n <div>\\n <ul>\\n \\n <li>We identified 16 parent-reported communication measures that have been used with RNDDs, but only six measures had validation data for at least one RNDD. High quality evidence is accumulating, with all validation studies in this review published between 2020 to 2023. Modifications of existing measures may be required to assess communication for RNDDs.</li>\\n </ul>\\n </div>\\n </section>\\n \\n <section>\\n \\n <h3> What are the clinical implications of this work?</h3>\\n \\n <div>\\n <ul>\\n \\n <li>This systematic review catalogues the available psychometric data for communication measures and indicates an ongoing need for new validation studies to ensure they are fit-for-purpose for upcoming clinical trials in RNDDs. This review will inform the selection of communication measures for clinical trials and research studies.</li>\\n </ul>\\n </div>\\n </section>\\n </section>\\n </div>\",\"PeriodicalId\":49182,\"journal\":{\"name\":\"International Journal of Language & Communication Disorders\",\"volume\":\"59 6\",\"pages\":\"2528-2553\"},\"PeriodicalIF\":1.5000,\"publicationDate\":\"2024-08-14\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://onlinelibrary.wiley.com/doi/epdf/10.1111/1460-6984.13100\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"International Journal of Language & Communication Disorders\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://onlinelibrary.wiley.com/doi/10.1111/1460-6984.13100\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"AUDIOLOGY & SPEECH-LANGUAGE PATHOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"International Journal of Language & Communication Disorders","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1111/1460-6984.13100","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"AUDIOLOGY & SPEECH-LANGUAGE PATHOLOGY","Score":null,"Total":0}
Parent-reported outcome measures evaluating communication in individuals with rare neurodevelopmental disorders: A systematic review
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.
WHAT THIS PAPER ADDS
What is already known on the subject
Communication is a critical domain for families with a child with a rare neurodevelopmental disorder (RNDD). Validated outcome measures are essential for accurate evaluation and interpretation of responses to treatments in clinical trials.
What this paper adds to existing knowledge
We identified 16 parent-reported communication measures that have been used with RNDDs, but only six measures had validation data for at least one RNDD. High quality evidence is accumulating, with all validation studies in this review published between 2020 to 2023. Modifications of existing measures may be required to assess communication for RNDDs.
What are the clinical implications of this work?
This systematic review catalogues the available psychometric data for communication measures and indicates an ongoing need for new validation studies to ensure they are fit-for-purpose for upcoming clinical trials in RNDDs. This review will inform the selection of communication measures for clinical trials and research studies.
期刊介绍：
The International Journal of Language & Communication Disorders (IJLCD) is the official journal of the Royal College of Speech & Language Therapists. The Journal welcomes submissions on all aspects of speech, language, communication disorders and speech and language therapy. It provides a forum for the exchange of information and discussion of issues of clinical or theoretical relevance in the above areas.
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