Developmental Medicine and Child Neurology最新文献_第5页

Involving people with lived experience when setting cerebral palsy research priorities: A scoping review.

IF 3.8 2区医学

Developmental Medicine and Child Neurology Pub Date : 2025-01-24 DOI: 10.1111/dmcn.16219

Evonne Younan, Sarah McIntyre, Natasha Garrity, Tasneem Karim, Mark Wallace, Paul Gross, Shona Goldsmith

{"title":"Involving people with lived experience when setting cerebral palsy research priorities: A scoping review.","authors":"Evonne Younan, Sarah McIntyre, Natasha Garrity, Tasneem Karim, Mark Wallace, Paul Gross, Shona Goldsmith","doi":"10.1111/dmcn.16219","DOIUrl":"https://doi.org/10.1111/dmcn.16219","url":null,"abstract":"Aim: To describe research priority-setting activities for cerebral palsy (CP) that have been conducted worldwide involving people with lived experience, focusing on participant characteristics, methods employed, identified research priorities, and collaboration as research partners.Method: The JBI scoping review approach was followed. Six electronic databases and grey literature were searched for all publications up to February 2024. We extracted study and participant characteristics, methods, and research priorities. Priorities were then categorized into prevention and cure, quality of life and community engagement, and service provision and intervention.Results: Five studies from North America and Australia met the inclusion criteria. Participants with lived experience were most often parents/caregivers (n = 135, proportion 12-80%), with 54 (proportion 12-25%) people with CP participating in the priority-setting exercises. The studies' methods were varied, with surveys and workshops being the most common. The most reported category of research priorities was optimal intervention. People with lived experience collaborated as research partners (e.g. in aspects of study development/analysis/reporting) in four studies.Interpretation: This review, the first to examine CP research priority-setting efforts on a global scale, identified five activities conducted to date. The small overall number of participants with lived experience of CP, originating only from North America and Australia, highlights the need for increased representation to better reflect the diverse CP community worldwide. Future projects need to address these gaps, using rigorous methodologies, and continued collaboration with research partners to ensure their perspectives shape and enhance the research agenda.","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2025-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143043182","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}

引用次数: 0

Making visible disability the new normal in health professionals.

IF 3.8 2区医学

Developmental Medicine and Child Neurology Pub Date : 2025-01-24 DOI: 10.1111/dmcn.16245

Peter Rosenbaum, Julia Hanes

引用次数: 0

Diagnostic accuracy of early neonatal MRI in predicting adverse motor outcomes in children born preterm: Systematic review and meta-analysis.

IF 3.8 2区医学

Developmental Medicine and Child Neurology Pub Date : 2025-01-23 DOI: 10.1111/dmcn.16248

引用次数: 0

'A Fence or an Ambulance' for disabled children.

IF 3.8 2区医学

Developmental Medicine and Child Neurology Pub Date : 2025-01-23 DOI: 10.1111/dmcn.16243

Catherine Tuffrey

引用次数: 0

Prevalence of and risk factors for osteoporosis and fragility fracture in adults with cerebral palsy: A systematic review.

IF 3.8 2区医学

Developmental Medicine and Child Neurology Pub Date : 2025-01-23 DOI: 10.1111/dmcn.16249

引用次数: 0

Morbidities and comorbidities associated with optic nerve hypoplasia and septo-optic-pituitary dysplasia.

IF 3.8 2区医学

Developmental Medicine and Child Neurology Pub Date : 2025-01-23 DOI: 10.1111/dmcn.16247

引用次数: 0

Adaptive functioning in children and young adults with monogenic neurodevelopmental disorders.

IF 3.8 2区医学

Developmental Medicine and Child Neurology Pub Date : 2025-01-23 DOI: 10.1111/dmcn.16227

Emma K Baker, Miya St John, Ruth Braden, Lottie D Morison, Elana J Forbes, Fatma Lelik, Stephen J C Hearps, David J Amor, Angela T Morgan

{"title":"Adaptive functioning in children and young adults with monogenic neurodevelopmental disorders.","authors":"Emma K Baker, Miya St John, Ruth Braden, Lottie D Morison, Elana J Forbes, Fatma Lelik, Stephen J C Hearps, David J Amor, Angela T Morgan","doi":"10.1111/dmcn.16227","DOIUrl":"https://doi.org/10.1111/dmcn.16227","url":null,"abstract":"Aim: To examine the adaptive behaviour profiles of children with monogenic neurodevelopmental disorders (NDDs) to determine whether syndrome-specific or transdiagnostic approaches provide a better understanding of the adaptive behavioural phenotypes of these NDDs.Method: This cross-sectional study included parents and caregivers of 243 (48% female) individuals (age range = 1-25 years; mean = 8 years 10 months, SD = 5 years 8 months) with genetically confirmed monogenic NDDs (CDK13, DYRK1A, FOXP2, KAT6A, KANSL1, SETBP1, BRPF1, and DDX3X). Parents and caregivers completed the Vineland Adaptive Behavior Scales, Third Edition to assess communication, daily living, socialization, and motor skills.Results: Linear regression models comparing mean adaptive behaviours between monogenic NDDs, adjusting for the presence of intellectual disability, revealed few group differences. Children with variants in BRPF1 or KANSL1 had better adaptive behaviour skills compared to children with variants in CDK13, DDX3X, DYRK1A, and KAT6A, although group differences varied across domains. A latent profile analysis showed compelling evidence for a five-profile model. These profiles were homogeneous, with similar delays across the subdomain scores in each profile. Additionally, each monogenic NDD was represented in each profile, with a few exceptions.Interpretation: Transdiagnostic approaches to understand adaptive behaviour in monogenic NDDs provide a better understanding of individual strengths and challenges, enabling more targeted support.","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2025-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143025461","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}

引用次数: 0

Cerebral palsy pain instruments: Recommended tools for clinical research studies by the National Institute of Neurological Disorders and Stroke Cerebral Palsy Common Data Elements project.

IF 3.8 2区医学

Developmental Medicine and Child Neurology Pub Date : 2025-01-23 DOI: 10.1111/dmcn.16246

引用次数: 0

Behavioral problems in migrant children born preterm: Is it about language or is it about the system? 早产流动儿童的行为问题：是语言问题还是制度问题？

IF 3.8 2区医学

Developmental Medicine and Child Neurology Pub Date : 2025-01-20 DOI: 10.1111/dmcn.16242

Frank Müller, Christine Happle, Eva Noack

引用次数: 0

Developmental variability in paediatric SGCE-related myoclonus dystonia syndrome. 小儿sgce相关肌阵挛性肌张力障碍综合征的发育变异性

IF 3.8 2区医学