{"title":"Using administrative healthcare databases to estimate the prevalence of spina bifida across the lifespan: Challenges and opportunities.","authors":"Jorge Román Corona-Rivera","doi":"10.1111/dmcn.70172","DOIUrl":"https://doi.org/10.1111/dmcn.70172","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":4.3,"publicationDate":"2026-01-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146087827","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":"Breaking barriers to rehabilitation for children with disabilities in low- and middle-income countries: A call for multifaceted, context-specific action.","authors":"Thembi J Katangwe-Chirwa","doi":"10.1111/dmcn.70174","DOIUrl":"https://doi.org/10.1111/dmcn.70174","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":4.3,"publicationDate":"2026-01-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146087849","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}
Julie Bershadsky, Catharine Riley, Sandra L Pettingell, Sheryl A Larson, Jennifer Hall-Lande, Libby Hallas, Tiebin Liu, Jennita Reefhuis
Aim: To estimate the prevalence of spina bifida across the lifespan, the number of people with spina bifida by state, and variations in spina bifida prevalence by insurance type, state, and selected demographics.
Method: This was an observational study that used administrative insurance data. We used three public-payer data sets (Medicaid Fee for Service, Medicare, and Medicare Advantage) and one large employer-sponsored insurance database (Health Care Cost Institute [HCCI]) to estimate all-age prevalence of spina bifida in the USA. Claims data from 2017 to 2019 were used to identify spina bifida based on International Classification of Diseases, 10th Revision codes.
Results: The overall prevalence estimate of spina bifida was 3.20 per 10 000 (7.03 for Medicaid, 5.03 for Medicare, 1.72 for HCCI) and varied by demographics. We estimate at least 92 551 people in the USA live with spina bifida.
Interpretation: Most spina bifida prevalence estimates focus on birth prevalence. This study demonstrates that prevalence estimates across all ages throughout the lifespan can be generated using multiple insurance data sources.
{"title":"Prevalence of spina bifida across the lifespan in the USA.","authors":"Julie Bershadsky, Catharine Riley, Sandra L Pettingell, Sheryl A Larson, Jennifer Hall-Lande, Libby Hallas, Tiebin Liu, Jennita Reefhuis","doi":"10.1111/dmcn.70161","DOIUrl":"https://doi.org/10.1111/dmcn.70161","url":null,"abstract":"<p><strong>Aim: </strong>To estimate the prevalence of spina bifida across the lifespan, the number of people with spina bifida by state, and variations in spina bifida prevalence by insurance type, state, and selected demographics.</p><p><strong>Method: </strong>This was an observational study that used administrative insurance data. We used three public-payer data sets (Medicaid Fee for Service, Medicare, and Medicare Advantage) and one large employer-sponsored insurance database (Health Care Cost Institute [HCCI]) to estimate all-age prevalence of spina bifida in the USA. Claims data from 2017 to 2019 were used to identify spina bifida based on International Classification of Diseases, 10th Revision codes.</p><p><strong>Results: </strong>The overall prevalence estimate of spina bifida was 3.20 per 10 000 (7.03 for Medicaid, 5.03 for Medicare, 1.72 for HCCI) and varied by demographics. We estimate at least 92 551 people in the USA live with spina bifida.</p><p><strong>Interpretation: </strong>Most spina bifida prevalence estimates focus on birth prevalence. This study demonstrates that prevalence estimates across all ages throughout the lifespan can be generated using multiple insurance data sources.</p>","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":4.3,"publicationDate":"2026-01-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146087858","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}
Bernard Dan, Peter Rosenbaum, Lucinda Carr, Martin Gough, John Coughlan, Nonyelum Nweke
Cerebral palsy (CP) is a widely used descriptive label for a spectrum of motor impairments caused by non-progressive brain injury or malformation during early development. Recent advances in genetics, inflammation research, and neurophysiology have refined scientific understanding of CP, and studies in diverse global contexts, including low- and middle-income countries, have broadened knowledge of its clinical presentation. Shifting societal perspectives, particularly those informed by individuals with lived experience, have challenged ableist assumptions and promoted conceptual frameworks that are more inclusive. Growing recognition of the lifelong needs of adults with CP has further emphasized the necessity of appropriate services across the lifespan. This manuscript presents an updated description of CP, developed through a collaborative, multidisciplinary process integrating stakeholders' perspectives. A comprehensive stakeholder analysis and mapping strategy ensured wide representation, including individuals with CP, families, clinicians, researchers, and advocacy organizations. Data were collected using surveys, interviews, focus groups, and workshops, enabling a global dialogue that combined lived experience with clinical and scientific expertise. An annotation of 26 specific terms of the updated clinical description supports a clearer and more inclusive shared understanding of CP. We also present a more accessible plain-language version of the description, as well as a single-sentence summary. The updated description is intended as a framework to guide clinical practice, research, and policy, to advance the care, participation, and inclusion of individuals with CP.
{"title":"Updated description of cerebral palsy.","authors":"Bernard Dan, Peter Rosenbaum, Lucinda Carr, Martin Gough, John Coughlan, Nonyelum Nweke","doi":"10.1111/dmcn.70149","DOIUrl":"https://doi.org/10.1111/dmcn.70149","url":null,"abstract":"<p><p>Cerebral palsy (CP) is a widely used descriptive label for a spectrum of motor impairments caused by non-progressive brain injury or malformation during early development. Recent advances in genetics, inflammation research, and neurophysiology have refined scientific understanding of CP, and studies in diverse global contexts, including low- and middle-income countries, have broadened knowledge of its clinical presentation. Shifting societal perspectives, particularly those informed by individuals with lived experience, have challenged ableist assumptions and promoted conceptual frameworks that are more inclusive. Growing recognition of the lifelong needs of adults with CP has further emphasized the necessity of appropriate services across the lifespan. This manuscript presents an updated description of CP, developed through a collaborative, multidisciplinary process integrating stakeholders' perspectives. A comprehensive stakeholder analysis and mapping strategy ensured wide representation, including individuals with CP, families, clinicians, researchers, and advocacy organizations. Data were collected using surveys, interviews, focus groups, and workshops, enabling a global dialogue that combined lived experience with clinical and scientific expertise. An annotation of 26 specific terms of the updated clinical description supports a clearer and more inclusive shared understanding of CP. We also present a more accessible plain-language version of the description, as well as a single-sentence summary. The updated description is intended as a framework to guide clinical practice, research, and policy, to advance the care, participation, and inclusion of individuals with CP.</p>","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":4.3,"publicationDate":"2026-01-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146087821","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":"The MacKeith Prize for BPNA 2026 has been awarded to Dr. Thiloka Ratnaike","authors":"","doi":"10.1111/dmcn.70116","DOIUrl":"10.1111/dmcn.70116","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":"68 S1","pages":""},"PeriodicalIF":4.3,"publicationDate":"2026-01-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/dmcn.70116","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146046658","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Oral Presentations","authors":"","doi":"10.1111/dmcn.70117","DOIUrl":"10.1111/dmcn.70117","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":"68 S1","pages":"S7-S18"},"PeriodicalIF":4.3,"publicationDate":"2026-01-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/dmcn.70117","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146046638","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Video Challenge Abstracts","authors":"","doi":"10.1111/dmcn.70126","DOIUrl":"10.1111/dmcn.70126","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":"68 S1","pages":"S19-S21"},"PeriodicalIF":4.3,"publicationDate":"2026-01-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/dmcn.70126","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146046976","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Poster Presentations","authors":"","doi":"10.1111/dmcn.70118","DOIUrl":"10.1111/dmcn.70118","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":"68 S1","pages":"S22-S139"},"PeriodicalIF":4.3,"publicationDate":"2026-01-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/dmcn.70118","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146046911","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Martin Johansson, Eva Larsson, Gerd Holmström, Olga Kochukhova, Lena Hellström-Westas, Ylva F Kaul
Aim: To explore longitudinal associations between ophthalmological outcome and development of visual perception, fine motor precision, and visual-motor integration (VMI) in children born very preterm (gestational age <32 weeks).
Method: This was a prospective longitudinal cohort study of 113 children (51 females, 62 males) born very preterm. Visual acuity, low-contrast visual acuity, stereopsis, and strabismus were investigated at 2 years 6 months (n = 98), 6 years 6 months (n = 84), and 12 years (n = 59). VMI was assessed at 6 years 6 months and 12 years, and visual perception and fine motor precision at 12 years, with the Beery-Buktenica Developmental Test of Visual-Motor Integration. Controls born at term were assessed at 6 years 6 months (n = 64) and 12 years (n = 46).
Results: For children born preterm, subnormal visual acuity at 2 years 6 months was related to both poorer VMI and fine motor precision at 12 years. Subnormal visual acuity, strabismus, and stereopsis at 6 years 6 months were also related to poorer VMI, visuo-perceptual, and fine motor measures at 12 years. These associations were not present in controls born at term.
Interpretation: Subnormal ophthalmological function at 2 years 6 months and 6 years 6 months in children born very preterm is related to poorer performance on VMI, visuo-perceptual, and fine motor precision tasks at 12 years, indicating that the quality of visual input interacts with developing visual-motor abilities. The results of this study provide new insights on the relationship between ophthalmological function and neurodevelopment after preterm birth.
{"title":"Ophthalmological outcomes, visual perception, fine motor precision, and visual-motor integration in children born very preterm.","authors":"Martin Johansson, Eva Larsson, Gerd Holmström, Olga Kochukhova, Lena Hellström-Westas, Ylva F Kaul","doi":"10.1111/dmcn.70173","DOIUrl":"https://doi.org/10.1111/dmcn.70173","url":null,"abstract":"<p><strong>Aim: </strong>To explore longitudinal associations between ophthalmological outcome and development of visual perception, fine motor precision, and visual-motor integration (VMI) in children born very preterm (gestational age <32 weeks).</p><p><strong>Method: </strong>This was a prospective longitudinal cohort study of 113 children (51 females, 62 males) born very preterm. Visual acuity, low-contrast visual acuity, stereopsis, and strabismus were investigated at 2 years 6 months (n = 98), 6 years 6 months (n = 84), and 12 years (n = 59). VMI was assessed at 6 years 6 months and 12 years, and visual perception and fine motor precision at 12 years, with the Beery-Buktenica Developmental Test of Visual-Motor Integration. Controls born at term were assessed at 6 years 6 months (n = 64) and 12 years (n = 46).</p><p><strong>Results: </strong>For children born preterm, subnormal visual acuity at 2 years 6 months was related to both poorer VMI and fine motor precision at 12 years. Subnormal visual acuity, strabismus, and stereopsis at 6 years 6 months were also related to poorer VMI, visuo-perceptual, and fine motor measures at 12 years. These associations were not present in controls born at term.</p><p><strong>Interpretation: </strong>Subnormal ophthalmological function at 2 years 6 months and 6 years 6 months in children born very preterm is related to poorer performance on VMI, visuo-perceptual, and fine motor precision tasks at 12 years, indicating that the quality of visual input interacts with developing visual-motor abilities. The results of this study provide new insights on the relationship between ophthalmological function and neurodevelopment after preterm birth.</p>","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":4.3,"publicationDate":"2026-01-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146042136","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":"Individuals with cerebral palsy and health access: Met or unmet need?","authors":"Mark T Carew, Hannah Kuper","doi":"10.1111/dmcn.70170","DOIUrl":"https://doi.org/10.1111/dmcn.70170","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":4.3,"publicationDate":"2026-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146020334","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}