Developmental Medicine and Child Neurology最新文献

{"title":"Developmental and epileptic or epileptic encephalopathy with spike-wave activation in sleep: From the 'functional ablation' model to a neurodevelopmental network perspective.","authors":"Luca Andreoli, Stefania Maria Bova, Pierangelo Veggiotti","doi":"10.1111/dmcn.16361","DOIUrl":"https://doi.org/10.1111/dmcn.16361","url":null,"abstract":"<p><p>The interplay between epilepsy and cognition is intricate and multifaceted, particularly in the context of childhood-onset epileptic disorders where epileptic activity can significantly interfere with and disrupt the delicate, highly plastic, and environment-related trajectories of neurodevelopment. Developmental and epileptic or epileptic encephalopathy with spike-wave activation during slow sleep (D/EE-SWAS), a spectrum of conditions including Landau-Kleffner syndrome, could serve as a valuable model to explore these complexities. Research to date has primarily examined its distinctive features, including genetic and structural etiological factors, electroencephalographic patterns, and cognitive phenotypes, often interpreted through simplified cause-effect paradigms. The adoption of a network perspective that aligns with neurodevelopmental trajectories is essential to grasp the full complexity of this evolving condition. Advancing research requires the integration of multimodal data, while leveraging tools such as artificial intelligence to develop sophisticated models in order to achieve a holistic understanding of D/EE-SWAS.</p>","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2025-05-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144038755","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":"Childbirth for females with cerebral palsy","authors":"Bernard Dan","doi":"10.1111/dmcn.16362","DOIUrl":"10.1111/dmcn.16362","url":null,"abstract":"&lt;p&gt;A recent update of the description of cerebral palsy (CP) emphasizes the unique experience of each individual.&lt;span&gt;&lt;sup&gt;1&lt;/sup&gt;&lt;/span&gt; For a (currently unknown) proportion of females with CP, conception, pregnancy, childbirth, and motherhood are part of this uniqueness, including with regard to the associated health issues. Women's health issues have often been marginalized with respect to both clinical care and medical research, and this situation is compounded when intersecting with disability. Females with physical disabilities consistently report negative experiences throughout maternity related to inadequate support and systemic neglect, and they are underrepresented in studies.&lt;span&gt;&lt;sup&gt;2&lt;/sup&gt;&lt;/span&gt;&lt;/p&gt;&lt;p&gt;Very little information is available on childbirth in females with CP. Reported surveys and observational studies are limited, and difficult to interpret and generalize. Additionally, small groups of females with CP have also been part of larger samples of disabled females in maternity studies. These studies conclude that most disabled females experience uneventful pregnancies and delivery of healthy babies, though pregnancy course and outcomes vary widely. The mechanisms affecting pregnancy or even risk factors remain unclear. Inflammatory conditions, including urinary tract infections, venous thromboembolism, respiratory issues, mental health issues, reduced mobility, and limitations in access to care, for example, might deserve special attention. In CP, pregnancy-related risks may be exacerbated by genetic vulnerability factors underlying CP, preexisting nutritional deficiencies, medication for chronic health issues, and difficulty in obtaining and/or maintaining adequate prenatal care. Conversely, pregnancy-related changes can worsen spasticity, dystonia, musculoskeletal pain, and fatigue. Additionally, limited mobility enhances challenges in accessing prenatal monitoring and care.&lt;/p&gt;&lt;p&gt;One challenge in applying knowledge gained from studies on maternity in general disability, physical disability, or even CP, is that CP is characterized by particularly high complexity and heterogeneity.&lt;span&gt;&lt;sup&gt;1&lt;/sup&gt;&lt;/span&gt; Females with CP may have widely varied movement and posture disorders, with different levels of impairment and functioning, and other features, such as cognitive and communication difficulties that may influence their experience. A survey of 76 females with CP reporting 149 pregnancies in high-income country tertiary centres found functional level to be an important determinant of pregnancy experience. Seventy-one percent reported decreased mobility during pregnancy. Fifty percent underwent caesarean section.&lt;span&gt;&lt;sup&gt;3&lt;/sup&gt;&lt;/span&gt; This is difficult to interpret, as elective caesarean section can be proposed, for example, for cephalopelvic disproportion or abnormal fetal position, but also the assumption, or at least a concern that abnormal motor control would make vaginal delivery difficult. However, this has not been","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":"67 7","pages":"826-827"},"PeriodicalIF":3.8,"publicationDate":"2025-05-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/dmcn.16362","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144055424","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":"Still being left behind: Global action for children with disabilities.","authors":"Donald Wertlieb","doi":"10.1111/dmcn.16344","DOIUrl":"https://doi.org/10.1111/dmcn.16344","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2025-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144025647","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":"Respiratory admissions and impact of COVID-19 lockdowns for children with severe cerebral palsy.","authors":"Susan M Reid, Moya Vendeleur, Danielle Wurzel, Katherine Frayman, Joshua Osowicki, Kylie Crompton, Gordon Baikie, Giuliana Antolovich, Angela Guzys, Monica S Cooper","doi":"10.1111/dmcn.16346","DOIUrl":"https://doi.org/10.1111/dmcn.16346","url":null,"abstract":"<p><strong>Aim: </strong>To explore factors contributing to the burden of respiratory admissions in children with severe cerebral palsy (CP) by comparing admissions to a single tertiary paediatric hospital before, during, and after the period of social restrictions implemented to reduce transmission of COVID-19 (lockdown period).</p><p><strong>Method: </strong>For this observational study, three severe CP cohorts (pre-lockdown, lockdown, post-lockdown) were identified from a state-wide cerebral palsy register and linked to patient-level clinical and demographic data. Medical records were manually searched to identify respiratory hospitalizations. Frequency and details of admissions were compared across the three 2-year periods.</p><p><strong>Results: </strong>During the lockdown period, there were 24 hospitalizations for respiratory illness per 100 children compared to 37 and 47 in the pre-lockdown and post-lockdown periods (p < 0.001). Respiratory viruses (excluding picornaviruses) were detected in only 7% of lockdown admissions compared to 24% pre-lockdown and 30% post-lockdown. Sputum sampling was performed in 34% of admissions with gram-positive bacteria cultured in 6% admissions and gram-negative bacteria only in 18%.</p><p><strong>Interpretation: </strong>The study findings highlight an important dynamic contribution of viral infections to respiratory illnesses in children with severe CP and the potential to improve outcomes with personalized approaches based on defining individual factors predisposing to recurrent respiratory admissions.</p>","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2025-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144023489","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 silent majority: Adults with cerebral palsy and the research funding crisis.","authors":"Riccardo Ribera","doi":"10.1111/dmcn.16360","DOIUrl":"https://doi.org/10.1111/dmcn.16360","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2025-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144040154","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":"Executive function in cerebral palsy: A transdiagnostic marker for neurodevelopmental complexity.","authors":"Kelsie A Boulton, Adam J Guastella","doi":"10.1111/dmcn.16341","DOIUrl":"https://doi.org/10.1111/dmcn.16341","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2025-05-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144055426","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":"Validation of the Danish, Dutch, and Norwegian translations of the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test: Work in progress.","authors":"Maria Fragala-Pinkham","doi":"10.1111/dmcn.16358","DOIUrl":"https://doi.org/10.1111/dmcn.16358","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2025-05-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143996807","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":"How to measure and increase participation in community activities among children with disabilities.","authors":"Sigrid Østensjø","doi":"10.1111/dmcn.16343","DOIUrl":"https://doi.org/10.1111/dmcn.16343","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144006617","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":"Mobility device use in children with cerebral palsy.","authors":"Elizabeth Maus, Ben Reader, Jill C Heathcock","doi":"10.1111/dmcn.16345","DOIUrl":"https://doi.org/10.1111/dmcn.16345","url":null,"abstract":"<p><strong>Aims: </strong>To quantify the number and types of mobility devices used by children with cerebral palsy (CP) and explore the relationships between Gross Motor Functional Classification System (GMFCS) level, age, insurance, income, and number and types of devices.</p><p><strong>Method: </strong>This was a secondary analysis of a cohort from a larger randomized controlled trial. Data from 89 children with CP (56.2% male and 43.8% female; mean = 4 years 11 months; SD = 2 years 0 months; range 2 years 0 months-8 years 10 months) were collected from electronic medical records, parent-completed medical history questionnaires, and the Hollingshead Four-Factor Index. The analysis included quasi-Poisson and logistical regressions.</p><p><strong>Results: </strong>Most children had Medicaid insurance (83.2%). All income and GMFCS levels were represented. The most common mobility devices were lower-extremity orthoses (75.3%). The number of devices used increased by 8.2% for each 1-year increase in age. Children classified in GMFCS level V used 5.1, 2.9, and 1.6 times more mobility devices than children classified in GMFCS levels I, II, and III respectively. GMFCS level also predicted the use of wheelchairs, bath chairs, and standers. Income and insurance were not significant.</p><p><strong>Interpretation: </strong>Children used more devices as age and GMFCS level increased. Device access is an important public health initiative.</p>","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":3.8,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144065178","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 European Health Data Space: Unlocking the power of health data","authors":"Sofie De Broe,&nbsp;Nick Marly","doi":"10.1111/dmcn.16359","DOIUrl":"10.1111/dmcn.16359","url":null,"abstract":"&lt;p&gt;In today's healthcare landscape, data are no longer just a by-product of treatment but a vital asset. Health data can transform research, improve outcomes, and guide policy, but only if they are accessible, high-quality, secure, and used ethically. The European Health Data Space (EHDS) stands at the center of this transformation. It focuses on making health data available for primary as well as secondary use, allowing data that were originally collected for care to also benefit research, innovation, and policy-making. European Union (EU) member states must create national data catalogues where researchers can explore a comprehensive overview of available data sets from hospitals, insurers, public institutions, and citizen science projects. These catalogues help researchers find and request data more easily, even discovering data sets they had not initially considered. This boosts ongoing projects, inspires new ideas, and fosters collaboration across disciplines.&lt;/p&gt;&lt;p&gt;By supporting open data policies and the FAIR principles (Findable, Accessible, Interoperable, and Reusable),&lt;span&gt;&lt;sup&gt;1&lt;/sup&gt;&lt;/span&gt; the EHDS encourages ethical and efficient reuse of data. Reducing redundant data collection saves time and resources. Linking data sets from different sources allows researchers to conduct richer, more nuanced analyses, revealing insights that would remain hidden in isolated data sets, such as environmental data. Specific efforts are made to obtain structured data from free text documents such as reports and protocols (e.g. with artificial intelligence [AI] tools).&lt;/p&gt;&lt;p&gt;Yet data access is not only a technical issue; it is also legal and political. Existing legislation can unintentionally block access to data that could be crucial for public health research. In Belgium, the Health Data Agency (HDA) was established to support and safeguard responsible data use in line with EHDS goals. Belgium's HDA promotes legal reforms that remove such barriers while protecting privacy and ethical standards.&lt;span&gt;&lt;sup&gt;2&lt;/sup&gt;&lt;/span&gt; Member states should recognize health research as a public good and align with EU statistical standards, encouraging public bodies to release valuable data sets for research use.&lt;/p&gt;&lt;p&gt;Efficient data access must also be well-managed. The EHDS requires efficient handling of data access applications and data requests (anonymized data to the level of statistical usage only). Member states should prioritize applications that address urgent national and EU health challenges, such as chronic disorders, health inequalities, or digital transformation. This requires transparent and inclusive collaboration among stakeholders to ensure that data usage is rooted in public interest and patient needs.&lt;/p&gt;&lt;p&gt;Building a robust health data system also demands coordinated efforts across national and European levels. The EHDS requires each member state to create at least one health data access body responsible for granting permits, ensuring data securit","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":"67 8","pages":"969-970"},"PeriodicalIF":3.8,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/dmcn.16359","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144049055","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}