{"title":"Growing up together with young people with disabilities: Co-producing the future.","authors":"Charles Zammit, Annette Zammit, Dido Green","doi":"10.1111/dmcn.16169","DOIUrl":"https://doi.org/10.1111/dmcn.16169","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2024-11-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142584117","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Variables included in cerebral palsy registries globally: A scoping review.","authors":"","doi":"10.1111/dmcn.16170","DOIUrl":"https://doi.org/10.1111/dmcn.16170","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2024-11-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142584704","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Adverse events after chemodenervation with onabotulinum neurotoxin A in children with hypertonia and sialorrhea.","authors":"","doi":"10.1111/dmcn.16168","DOIUrl":"https://doi.org/10.1111/dmcn.16168","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2024-11-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142583751","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Predictive value of the General Movements Assessment and Standardized Infant NeuroDevelopmental Assessment in infants at high risk of neurodevelopmental disorders.","authors":"","doi":"10.1111/dmcn.16174","DOIUrl":"https://doi.org/10.1111/dmcn.16174","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2024-11-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142584692","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Cerebellar haemorrhage and atrophy in infants born extremely preterm with intraventricular haemorrhage.","authors":"","doi":"10.1111/dmcn.16167","DOIUrl":"https://doi.org/10.1111/dmcn.16167","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2024-11-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142584020","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Jessica M Kramer, Pengsheng Ni, Beth Pfeiffer, Andrew Persch, Fiorella Guerrero Calle, Ariel Schwartz, Elizabeth Barbour, Daniel K Davies
Aim: To evaluate the structural validity, internal reliability, and measurement invariance of the Pediatric Evaluation of Disability Inventory - Patient Reported Outcome (PEDI-PRO), a measure of functional performance of discrete tasks required to participate in everyday life situations important for adulthood.
Method: This was a cross-sectional study with 306 young people aged 14 to 22 years (mean 18 years 10 months, SD 2 years 5 months) with developmental disabilities (43.1% autism spectrum disorder only, 23.9% intellectual disability, 17.6% other disability, 11.4% both autism spectrum disorder and intellectual disability, 3.9% missing) completed the PEDI-PRO. Following COnsensus-based Standards for selection of health Measurement INstruments (COSMIN) criteria, we conducted a confirmatory factor analysis, applied a Rasch rating-scale model, examined Cronbach's alpha, Rasch person reliability and separation coefficients, and differential item functioning (DIF).
Results: Structural validity was good for the daily activities and mobility domains, and acceptable for the social/cognitive domain. The 3-point Likert response scale functioned as intended. All domains demonstrated acceptable internal consistency on all criteria. One or two items in each domain demonstrated DIF, but the impact on all domain scores was less than 1.0 threshold.
Interpretation: The cognitively accessible design and innovative conceptual measurement framework probably contributed to these promising findings. The PEDI-PRO addresses a gap in high-quality patient-reported outcome measures that assess priority outcomes for young people with developmental disabilities.
{"title":"Psychometric properties of the Pediatric Evaluation of Disability Inventory - Patient Reported Outcome: A cognitively accessible measure of functional performance.","authors":"Jessica M Kramer, Pengsheng Ni, Beth Pfeiffer, Andrew Persch, Fiorella Guerrero Calle, Ariel Schwartz, Elizabeth Barbour, Daniel K Davies","doi":"10.1111/dmcn.16117","DOIUrl":"https://doi.org/10.1111/dmcn.16117","url":null,"abstract":"<p><strong>Aim: </strong>To evaluate the structural validity, internal reliability, and measurement invariance of the Pediatric Evaluation of Disability Inventory - Patient Reported Outcome (PEDI-PRO), a measure of functional performance of discrete tasks required to participate in everyday life situations important for adulthood.</p><p><strong>Method: </strong>This was a cross-sectional study with 306 young people aged 14 to 22 years (mean 18 years 10 months, SD 2 years 5 months) with developmental disabilities (43.1% autism spectrum disorder only, 23.9% intellectual disability, 17.6% other disability, 11.4% both autism spectrum disorder and intellectual disability, 3.9% missing) completed the PEDI-PRO. Following COnsensus-based Standards for selection of health Measurement INstruments (COSMIN) criteria, we conducted a confirmatory factor analysis, applied a Rasch rating-scale model, examined Cronbach's alpha, Rasch person reliability and separation coefficients, and differential item functioning (DIF).</p><p><strong>Results: </strong>Structural validity was good for the daily activities and mobility domains, and acceptable for the social/cognitive domain. The 3-point Likert response scale functioned as intended. All domains demonstrated acceptable internal consistency on all criteria. One or two items in each domain demonstrated DIF, but the impact on all domain scores was less than 1.0 threshold.</p><p><strong>Interpretation: </strong>The cognitively accessible design and innovative conceptual measurement framework probably contributed to these promising findings. The PEDI-PRO addresses a gap in high-quality patient-reported outcome measures that assess priority outcomes for young people with developmental disabilities.</p>","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2024-11-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142577105","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Serum metabolomics after exercise in ambulatory individuals with cerebral palsy.","authors":"","doi":"10.1111/dmcn.16164","DOIUrl":"https://doi.org/10.1111/dmcn.16164","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2024-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142565037","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Use of primary health care services among children and adolescents with cerebral palsy.","authors":"","doi":"10.1111/dmcn.16155","DOIUrl":"https://doi.org/10.1111/dmcn.16155","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2024-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142565038","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Christina Engel Hoei-Hansen, Gija Rackauskaite, Mads Langager Larsen
{"title":"Is it now possible to identify all newborn infants at risk of cerebral palsy?","authors":"Christina Engel Hoei-Hansen, Gija Rackauskaite, Mads Langager Larsen","doi":"10.1111/dmcn.16159","DOIUrl":"https://doi.org/10.1111/dmcn.16159","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2024-10-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142548678","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Working together makes us better: Including lived experience in research.","authors":"Olaf Kraus de Camargo, Briano Di Rezze","doi":"10.1111/dmcn.16161","DOIUrl":"https://doi.org/10.1111/dmcn.16161","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2024-10-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142548679","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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