{"title":"Questions of terminology, genetics, and life stages in the updated cerebral palsy description.","authors":"Brigitte Vollmer","doi":"10.1111/dmcn.70129","DOIUrl":"https://doi.org/10.1111/dmcn.70129","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":4.3,"publicationDate":"2025-12-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145858855","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}
Hajar Almoajil, Sally Hopewell, Helen Dawes, Francine Toye, Rakhshan Kamran, Tim Theologis
Aim: To develop consensus on a core set of standardized outcome measures to be applied to each domain of the previously developed core outcome set for lower limb orthopaedic surgery for ambulant children with cerebral palsy (CP).
Method: This work consisted of the following three steps: (1) a scoping review of the literature to identify previously used outcome measures to assess lower limb orthopaedic surgery of ambulant children with CP; (2) searching the COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) and PubMed databases to assess the quality of the psychometric properties of outcome measures and feasibility criteria; and (3) a consensus meeting with seven healthcare professionals with expertise in CP research and in the assessment of outcome measure psychometric properties was held in September 2021. Consensus on the outcome measures core set was developed through presentation of the evidence and whole-group discussions.
Results: A combination of clinician-driven and patient-reported outcome measures was considered the most appropriate way to assess the outcome of orthopaedic surgical interventions. Agreement was reached on seven core outcome measures: three-dimensional gait analysis, Edinburgh Visual Gait Scale, Gross Motor Function Measure, Gait Outcome Assessment List, Gillette Functional Assessment Questionnaire, Patient-Reported Outcome Measure Instrument System (pain interference, and fatigue), and Cerebral Palsy Quality of Life for Children questionnaire.
Interpretation: This study recommends a set of core outcome measures for use in research on lower limb orthopaedic surgery for ambulant children with CP. Consistent use of this core set would enhance validity and comparability of future research.
{"title":"Development of a set of core outcome measures for ambulant children with cerebral palsy after lower limb orthopaedic surgery.","authors":"Hajar Almoajil, Sally Hopewell, Helen Dawes, Francine Toye, Rakhshan Kamran, Tim Theologis","doi":"10.1111/dmcn.70133","DOIUrl":"10.1111/dmcn.70133","url":null,"abstract":"<p><strong>Aim: </strong>To develop consensus on a core set of standardized outcome measures to be applied to each domain of the previously developed core outcome set for lower limb orthopaedic surgery for ambulant children with cerebral palsy (CP).</p><p><strong>Method: </strong>This work consisted of the following three steps: (1) a scoping review of the literature to identify previously used outcome measures to assess lower limb orthopaedic surgery of ambulant children with CP; (2) searching the COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) and PubMed databases to assess the quality of the psychometric properties of outcome measures and feasibility criteria; and (3) a consensus meeting with seven healthcare professionals with expertise in CP research and in the assessment of outcome measure psychometric properties was held in September 2021. Consensus on the outcome measures core set was developed through presentation of the evidence and whole-group discussions.</p><p><strong>Results: </strong>A combination of clinician-driven and patient-reported outcome measures was considered the most appropriate way to assess the outcome of orthopaedic surgical interventions. Agreement was reached on seven core outcome measures: three-dimensional gait analysis, Edinburgh Visual Gait Scale, Gross Motor Function Measure, Gait Outcome Assessment List, Gillette Functional Assessment Questionnaire, Patient-Reported Outcome Measure Instrument System (pain interference, and fatigue), and Cerebral Palsy Quality of Life for Children questionnaire.</p><p><strong>Interpretation: </strong>This study recommends a set of core outcome measures for use in research on lower limb orthopaedic surgery for ambulant children with CP. Consistent use of this core set would enhance validity and comparability of future research.</p>","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":4.3,"publicationDate":"2025-12-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145851374","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}
Arthur Felipe Barroso de Lima, Amanda Cristina Fernandes, Amanda Alves Rodrigues Soares, Hércules Ribeiro Leite, Ricardo Rodrigues de Sousa Junior
Aim: To identify the standardized instruments used to assess mobility aspects in children and adolescents with autism spectrum disorder (ASD), analyse the quality of their psychometric properties and their level of evidence, and develop a clinical decision map for these instruments.
Method: Articles were screened and study characteristics were extracted. The methodological quality of the selected studies was analysed using the COSMIN Risk of Bias checklist. The quality of evidence for each measurement property was defined using a modified version of the Grading of Recommendations Assessment, Development and Evaluation (GRADE) system.
Results: Eleven instruments were analysed in 11 studies. Of these instruments, three are directed towards performance assessment and eight towards capacity assessment. The selected studies evaluated the psychometric properties of Vineland Adaptive Behavior Scales, Gross Motor Assessment of Children and Adolescents with Autism Spectrum Disorder, Ignite Challenge, Pediatric Evaluation of Disability Inventory Computer Adaptive Test, Miller Function and Participation Scales, Peabody Developmental Motor Scales, Second Edition, Test of Gross Motor Development, Second and Third Editions, Timed Up and Go, Developmental Coordination Disorder Questionnaire, and Movement Assessment Battery for Children, Second Edition. Of these instruments, nine were developed for the evaluation of typically developing children and children with disabilities, and have been validated for the population with ASD (81.8%). The other two instruments (18.2%) were specifically developed for the evaluation of the population with ASD.
Interpretation: Most (56.51%) of the measurement properties of the instruments demonstrated low or very low evidence because of risk of bias and imprecision, reinforcing the importance of further studies to strengthen the validity and applicability of these assessments.
目的：确定用于评估儿童和青少年自闭症谱系障碍（ASD）行动能力方面的标准化工具，分析其心理测量特性的质量和证据水平，并为这些工具制定临床决策图。方法：筛选文献，提取研究特征。使用COSMIN偏倚风险检查表对所选研究的方法学质量进行分析。每个测量属性的证据质量使用改进版本的建议评估、发展和评价分级（GRADE）系统来定义。结果：11项研究分析了11种仪器。在这些文书中，有三份是针对业绩评估，八份是针对能力评估。选择的研究评估了Vineland适应行为量表、自闭症谱系障碍儿童和青少年大动作评估量表、Ignite挑战、儿童残疾评估量表计算机适应测试、Miller功能和参与量表、Peabody发育运动量表第二版、大动作发展测试第二版和第三版、Timed Up and Go、发育协调障碍问卷、和儿童运动评估电池，第二版。在这些工具中，有9种是用于评估正常发育儿童和残疾儿童的，并且已经在ASD人群中得到验证（81.8%）。另外两个工具（18.2%）是专门为评估ASD人群而开发的。解释：由于存在偏倚和不精确的风险，大多数（56.51%）仪器的测量特性显示出低证据或极低证据，这加强了进一步研究以加强这些评估的有效性和适用性的重要性。
{"title":"Instruments assessing mobility of children and adolescents with autism spectrum disorder: A systematic review and decision map.","authors":"Arthur Felipe Barroso de Lima, Amanda Cristina Fernandes, Amanda Alves Rodrigues Soares, Hércules Ribeiro Leite, Ricardo Rodrigues de Sousa Junior","doi":"10.1111/dmcn.70136","DOIUrl":"https://doi.org/10.1111/dmcn.70136","url":null,"abstract":"<p><strong>Aim: </strong>To identify the standardized instruments used to assess mobility aspects in children and adolescents with autism spectrum disorder (ASD), analyse the quality of their psychometric properties and their level of evidence, and develop a clinical decision map for these instruments.</p><p><strong>Method: </strong>Articles were screened and study characteristics were extracted. The methodological quality of the selected studies was analysed using the COSMIN Risk of Bias checklist. The quality of evidence for each measurement property was defined using a modified version of the Grading of Recommendations Assessment, Development and Evaluation (GRADE) system.</p><p><strong>Results: </strong>Eleven instruments were analysed in 11 studies. Of these instruments, three are directed towards performance assessment and eight towards capacity assessment. The selected studies evaluated the psychometric properties of Vineland Adaptive Behavior Scales, Gross Motor Assessment of Children and Adolescents with Autism Spectrum Disorder, Ignite Challenge, Pediatric Evaluation of Disability Inventory Computer Adaptive Test, Miller Function and Participation Scales, Peabody Developmental Motor Scales, Second Edition, Test of Gross Motor Development, Second and Third Editions, Timed Up and Go, Developmental Coordination Disorder Questionnaire, and Movement Assessment Battery for Children, Second Edition. Of these instruments, nine were developed for the evaluation of typically developing children and children with disabilities, and have been validated for the population with ASD (81.8%). The other two instruments (18.2%) were specifically developed for the evaluation of the population with ASD.</p><p><strong>Interpretation: </strong>Most (56.51%) of the measurement properties of the instruments demonstrated low or very low evidence because of risk of bias and imprecision, reinforcing the importance of further studies to strengthen the validity and applicability of these assessments.</p>","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":4.3,"publicationDate":"2025-12-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145859168","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}
Arthur Felipe Barroso de Lima, Amanda Cristina Fernandes, Amanda Alves Rodrigues Soares, Hércules Ribeiro Leite, Ricardo Rodrigues de Sousa Junior
{"title":"Instrumentos que avaliam a mobilidade de crianças e adolescentes com transtorno do espectro autista: Uma revisão sistemática e mapa de decisão.","authors":"Arthur Felipe Barroso de Lima, Amanda Cristina Fernandes, Amanda Alves Rodrigues Soares, Hércules Ribeiro Leite, Ricardo Rodrigues de Sousa Junior","doi":"10.1111/dmcn.70144","DOIUrl":"https://doi.org/10.1111/dmcn.70144","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":4.3,"publicationDate":"2025-12-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145851325","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}
<p>Multidisciplinary and interdisciplinary care are viewed as the criterion standard approaches in managing childhood-onset disabilities. Multidisciplinary teams, composed of clinicians, therapists, social workers, and educators, strive to integrate diverse professional perspectives into cohesive care plans. Their functioning relies on an implicit architecture of disciplinarity: each professional brings codified knowledge, shared vocabulary, standardized procedures, and a mandate for consistency. At the center of these carefully constructed systems are the child and family, whose perspectives, however, are often importantly distinct from and not informed by disciplinary thinking. That is because most often their insights arise not from professional training but from lived experiences, values, cultural contexts, and shifting priorities.</p><p>Indisciplinarity, on the other hand, highlights the inherent asymmetry between institutions of expertise and the subjective, dynamic nature of lived experience.<span><sup>1</sup></span> Families are not bound by disciplinary norms, nor are they expected to articulate their situations in clinical language. They have the flexibility to change their minds, adjust priorities, and redefine what matters most at any moment. This contingency is not an impediment but rather a reflection of the evolving realities of disability, care, and family life.</p><p>Professionals, by contrast, should embody the consensus knowledge and legitimacy of their fields. They are expected to maintain consistency, justify decisions, and align with standards of care. Such institutional disciplinarity is essential for ensuring safety and quality, but may come up against the everyday complexities of disability as experienced at the personal level. Childhood-onset conditions involve fluctuating needs, emotional burdens, unpredictable trajectories, and evolving identities. Families' decisions may at times appear inconsistent or irrational to clinicians, who may label these attitudes as treatment resistance, non-compliance, or non-adherence.<span><sup>2</sup></span> Yet these behaviours often reflect the legitimate, and sometimes protective, logic of indisciplinarity.</p><p>This tension may be particularly evident in decision-making. Multidisciplinary teams aim for decisions based on shared evidence and consensus. Caregiver decisions, however, may follow different logics: prioritizing moral concerns over functional goals, cultural values over clinical efficacy, the child's comfort over therapeutic intensity, or future aspirations over short-term burdens. When families decline recommended interventions, modify goals, or reinterpret their child's condition, professionals may experience frustration or disquietude. From the family's perspective, however, such decisions often reflect meaningful processes, responses to uncertainty, fatigue, or shifting household demands.</p><p>Indisciplinarity also provides a valuable contrast with interdisciplinarit
{"title":"Patient indisciplinarity within the multidisciplinary team for childhood-onset disability","authors":"Bernard Dan","doi":"10.1111/dmcn.70122","DOIUrl":"10.1111/dmcn.70122","url":null,"abstract":"<p>Multidisciplinary and interdisciplinary care are viewed as the criterion standard approaches in managing childhood-onset disabilities. Multidisciplinary teams, composed of clinicians, therapists, social workers, and educators, strive to integrate diverse professional perspectives into cohesive care plans. Their functioning relies on an implicit architecture of disciplinarity: each professional brings codified knowledge, shared vocabulary, standardized procedures, and a mandate for consistency. At the center of these carefully constructed systems are the child and family, whose perspectives, however, are often importantly distinct from and not informed by disciplinary thinking. That is because most often their insights arise not from professional training but from lived experiences, values, cultural contexts, and shifting priorities.</p><p>Indisciplinarity, on the other hand, highlights the inherent asymmetry between institutions of expertise and the subjective, dynamic nature of lived experience.<span><sup>1</sup></span> Families are not bound by disciplinary norms, nor are they expected to articulate their situations in clinical language. They have the flexibility to change their minds, adjust priorities, and redefine what matters most at any moment. This contingency is not an impediment but rather a reflection of the evolving realities of disability, care, and family life.</p><p>Professionals, by contrast, should embody the consensus knowledge and legitimacy of their fields. They are expected to maintain consistency, justify decisions, and align with standards of care. Such institutional disciplinarity is essential for ensuring safety and quality, but may come up against the everyday complexities of disability as experienced at the personal level. Childhood-onset conditions involve fluctuating needs, emotional burdens, unpredictable trajectories, and evolving identities. Families' decisions may at times appear inconsistent or irrational to clinicians, who may label these attitudes as treatment resistance, non-compliance, or non-adherence.<span><sup>2</sup></span> Yet these behaviours often reflect the legitimate, and sometimes protective, logic of indisciplinarity.</p><p>This tension may be particularly evident in decision-making. Multidisciplinary teams aim for decisions based on shared evidence and consensus. Caregiver decisions, however, may follow different logics: prioritizing moral concerns over functional goals, cultural values over clinical efficacy, the child's comfort over therapeutic intensity, or future aspirations over short-term burdens. When families decline recommended interventions, modify goals, or reinterpret their child's condition, professionals may experience frustration or disquietude. From the family's perspective, however, such decisions often reflect meaningful processes, responses to uncertainty, fatigue, or shifting household demands.</p><p>Indisciplinarity also provides a valuable contrast with interdisciplinarit","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":"68 3","pages":"300-301"},"PeriodicalIF":4.3,"publicationDate":"2025-12-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/dmcn.70122","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145846952","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}
Laura Gimeno, Ania Zylbersztejn, Ayana Cant, Ruth Gilbert, Katie Harron
Aim: To inform integrated support by education and health services by comparing hospitalization and school absence rates during primary school in children with and without neurodisability.
Method: In this linked administrative data cohort study, we followed 2 351 589 children born in England between 2003 and 2008 from enrolment in Reception class (age 4/5 years) to the end of primary school (age 10/11 years) using linked hospital and school records, identifying those with hospital-recorded neurodisability before starting school. We described rates of hospital admissions (per 100 person-years at risk) and school absences (percentage of total school days).
Results: Compared with those without neurodisability, the 2.2% of children with neurodisability had higher rates of planned and unplanned hospital admission during primary school (29.0 and 16.6 per 100 person-years at risk respectively, vs 4.3 and 3.7 per 100 person-years at risk) and missed more school days (6.5% vs 4.2%). Among subgroups of children with neurodisability, rates of admission and absence were consistently highest for those with cerebral palsy and lowest for those with high-risk perinatal conditions.
Interpretation: Children with neurodisability have far higher rates of hospital admission and school absence compared with those without neurodisability throughout primary school. A joined-up approach is needed between hospital and school to support children with neurodisability to participate in education.
{"title":"Hospital admissions and school absences of primary school children with and without neurodisability.","authors":"Laura Gimeno, Ania Zylbersztejn, Ayana Cant, Ruth Gilbert, Katie Harron","doi":"10.1111/dmcn.70128","DOIUrl":"https://doi.org/10.1111/dmcn.70128","url":null,"abstract":"<p><strong>Aim: </strong>To inform integrated support by education and health services by comparing hospitalization and school absence rates during primary school in children with and without neurodisability.</p><p><strong>Method: </strong>In this linked administrative data cohort study, we followed 2 351 589 children born in England between 2003 and 2008 from enrolment in Reception class (age 4/5 years) to the end of primary school (age 10/11 years) using linked hospital and school records, identifying those with hospital-recorded neurodisability before starting school. We described rates of hospital admissions (per 100 person-years at risk) and school absences (percentage of total school days).</p><p><strong>Results: </strong>Compared with those without neurodisability, the 2.2% of children with neurodisability had higher rates of planned and unplanned hospital admission during primary school (29.0 and 16.6 per 100 person-years at risk respectively, vs 4.3 and 3.7 per 100 person-years at risk) and missed more school days (6.5% vs 4.2%). Among subgroups of children with neurodisability, rates of admission and absence were consistently highest for those with cerebral palsy and lowest for those with high-risk perinatal conditions.</p><p><strong>Interpretation: </strong>Children with neurodisability have far higher rates of hospital admission and school absence compared with those without neurodisability throughout primary school. A joined-up approach is needed between hospital and school to support children with neurodisability to participate in education.</p>","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":4.3,"publicationDate":"2025-12-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145835238","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}
Camila Araújo Santos Santana, Peter Rosenbaum, Ana Carolina de Campos
Aim: To describe autonomy levels and explore factors associated with autonomy in participation of Brazilian young people with cerebral palsy (CP).
Method: This cross-sectional study included the following International Classification of Functioning, Disability and Health-informed variables: body functions-cognition; personal factors-age, sex, education, perceived self-efficacy; environmental factors-family income, parents' education; activity-gross motor, manual, and communication classifications; participation-autonomy (Rotterdam Transition Profile). Analysis of variance and linear multiple regression models were fitted.
Results: A total of 114 young people with CP participated (mean age 25 years 11 months [SD 11 years], 67 females). Transitional or complete autonomy in participation has been demonstrated in most life areas. Romantic relationships and sexuality were the areas with the lowest autonomy levels, while rehabilitation and leisure showed high autonomy levels. Participant's age (β = 0.9187; p < 0.001; 95% confidence interval: 3.3-5.8) and perceived self-efficacy (β = 1.6174; p = 0.044; 95% confidence interval: 0.002-2.1) were associated with autonomy level (R2adj = 0.522). Autonomy levels tended to increase with higher self-efficacy and age.
Interpretation: Personal factors appear to play a central role in the acquisition of autonomy in participation during transition to adulthood of young people with CP. More attention to personal factors and strategies is needed to support personal development favouring the acquisition of autonomy to participate in different life areas.
目的：描述巴西青年脑瘫（CP）患者的自主性水平，并探讨与自主性相关的因素。方法：本横断面研究包括以下国际功能、残疾和健康信息变量分类：身体功能-认知；个人因素——年龄、性别、教育程度、自我效能感；环境因素——家庭收入、父母教育程度；活动-大动作，手动和交流分类；参与-自治（鹿特丹过渡概况）。拟合方差分析和线性多元回归模型。结果：共有114名青年CP患者参与，平均年龄25岁11个月（SD 11岁），67名女性。在大多数生活领域都表现出过渡性或完全的自主参与。恋爱和性是自主性最低的领域，而康复和休闲则表现出较高的自主性。受试者年龄（β = 0.9187; p = 0.522）。自主性水平随自我效能感和年龄的增加而增加。解释：个人因素似乎在CP青年向成年过渡期间参与自主性的获得中起着核心作用。需要更多地关注个人因素和策略，以支持个人发展，有利于获得参与不同生活领域的自主性。
{"title":"Autonomy in participation of young people with cerebral palsy during the transition to adulthood.","authors":"Camila Araújo Santos Santana, Peter Rosenbaum, Ana Carolina de Campos","doi":"10.1111/dmcn.70111","DOIUrl":"https://doi.org/10.1111/dmcn.70111","url":null,"abstract":"<p><strong>Aim: </strong>To describe autonomy levels and explore factors associated with autonomy in participation of Brazilian young people with cerebral palsy (CP).</p><p><strong>Method: </strong>This cross-sectional study included the following International Classification of Functioning, Disability and Health-informed variables: body functions-cognition; personal factors-age, sex, education, perceived self-efficacy; environmental factors-family income, parents' education; activity-gross motor, manual, and communication classifications; participation-autonomy (Rotterdam Transition Profile). Analysis of variance and linear multiple regression models were fitted.</p><p><strong>Results: </strong>A total of 114 young people with CP participated (mean age 25 years 11 months [SD 11 years], 67 females). Transitional or complete autonomy in participation has been demonstrated in most life areas. Romantic relationships and sexuality were the areas with the lowest autonomy levels, while rehabilitation and leisure showed high autonomy levels. Participant's age (β = 0.9187; p < 0.001; 95% confidence interval: 3.3-5.8) and perceived self-efficacy (β = 1.6174; p = 0.044; 95% confidence interval: 0.002-2.1) were associated with autonomy level (R<sup>2</sup> <sub>adj</sub> = 0.522). Autonomy levels tended to increase with higher self-efficacy and age.</p><p><strong>Interpretation: </strong>Personal factors appear to play a central role in the acquisition of autonomy in participation during transition to adulthood of young people with CP. More attention to personal factors and strategies is needed to support personal development favouring the acquisition of autonomy to participate in different life areas.</p>","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":4.3,"publicationDate":"2025-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145806216","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}
Julia E Hanes, Joel J Ewert, Amalie Holmsen-Wong, Peter Rosenbaum, Ram Mishaal, Dynai Eilig
The landscape of care for individuals with cerebral palsy (CP) has evolved far beyond 'fixing' impairments toward a life course, biopsychosocial approach aimed at enhanced functioning. Parasports remain an underutilized tool to encourage and facilitate physical activity achievement while filling gaps in traditional medical and therapeutic thinking about this new way of delivering services. This narrative review synthesizes evidence spanning multiple sports and gross motor function levels, where parasports demonstrate measurable benefits across all domains of the International Classification of Functioning, Disability and Health. Given the rich array of parasport options, it remains challenging to determine appropriate recommendations across the spectrum of function seen in individuals with CP and related disabilities. We outline sport eligibility based on gross motor function and available adaptations. Rather than viewing parasport as an option for 'athletic' children, evidence supports treating it as an essential element of comprehensive care-uniquely combining therapeutic physical activity benefits with social inclusion, identity development, and community integration.
{"title":"Parasports for cerebral palsy: Thinking and 'prescribing' beyond the Paralympics.","authors":"Julia E Hanes, Joel J Ewert, Amalie Holmsen-Wong, Peter Rosenbaum, Ram Mishaal, Dynai Eilig","doi":"10.1111/dmcn.70115","DOIUrl":"https://doi.org/10.1111/dmcn.70115","url":null,"abstract":"<p><p>The landscape of care for individuals with cerebral palsy (CP) has evolved far beyond 'fixing' impairments toward a life course, biopsychosocial approach aimed at enhanced functioning. Parasports remain an underutilized tool to encourage and facilitate physical activity achievement while filling gaps in traditional medical and therapeutic thinking about this new way of delivering services. This narrative review synthesizes evidence spanning multiple sports and gross motor function levels, where parasports demonstrate measurable benefits across all domains of the International Classification of Functioning, Disability and Health. Given the rich array of parasport options, it remains challenging to determine appropriate recommendations across the spectrum of function seen in individuals with CP and related disabilities. We outline sport eligibility based on gross motor function and available adaptations. Rather than viewing parasport as an option for 'athletic' children, evidence supports treating it as an essential element of comprehensive care-uniquely combining therapeutic physical activity benefits with social inclusion, identity development, and community integration.</p>","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":4.3,"publicationDate":"2025-12-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145769790","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}
<p>In the last few decades there has been much talk of the need for parity of esteem between mental and physical health, but there seems to be a similar problem within the field of neurodevelopmental disorders.</p><p>I regularly see preschool children in my clinic with early developmental impairment, most prominently affecting speech, language, and communication. I explain to parents that their child's presentation may be due to a learning disability, a developmental language disorder, or autism. For some children, I also consider early trauma, including neglect, as a possible causative factor. But parents have largely only been concerned up to that point about autism and have rarely considered other possible diagnoses. That their child may have intellectual disability, for example, often comes as a shock.</p><p>This is not a surprise, as one could be forgiven for thinking in the current discourse, that the only causes of neurodivergence are autism or attention-deficit/hyperactivity disorder (ADHD). Care pathways are often designed to diagnose one or other of these conditions, often in isolation, with little apparent thought given to the differential diagnosis. We don't talk about diagnostic pathways for children presenting with communication challenges or difficulties with attention. And the outcome is often dichotomous – your child either has, or has not, got autism or ADHD.</p><p>Quite apart from the clinical nonsense of completely separate processes for diagnosing autism or ADHD, given there may be considerable overlap of difficulties and the conditions may co-occur, diagnostic assessments should surely consider which of a list of all possible differential diagnoses are most likely. A child with a limp is not told they don't have cerebral palsy, so no further explanation is required. Not only does the current system not give equal weight to the consideration of other diagnoses, but we risk giving the wrong diagnosis.</p><p>A UK study<span><sup>1</sup></span> found that developmental language disorder affected over 7.5% of children in the early school years, in contrast to language disorders associated with all other neurodisabilities (including autism) where the prevalence was 2.3%. There is significant impact on these children which may continue into adulthood, but a recent research priority setting exercise by the UK Royal College of Speech and Language Therapists illustrates the lack of evidence base in this condition (https://www.rcslt.org/wp-content/uploads/2025/09/DLD-Research-Priority-Phase-2-Report.pdf).</p><p>Intellectual disability with or without co-occuring conditions such as autism has a long-term impact for an individual and failing to identify this as an issue for the child may lead to them being denied appropriate services as an adult. DSM-5 diagnostic criterion E for autism spectrum disorder states: ‘These disturbances are not better explained by intellectual disability or global developmental delay’ (https://psychiatryonline
{"title":"Parity of esteem in neurodivergence","authors":"Catherine Tuffrey","doi":"10.1111/dmcn.70107","DOIUrl":"10.1111/dmcn.70107","url":null,"abstract":"<p>In the last few decades there has been much talk of the need for parity of esteem between mental and physical health, but there seems to be a similar problem within the field of neurodevelopmental disorders.</p><p>I regularly see preschool children in my clinic with early developmental impairment, most prominently affecting speech, language, and communication. I explain to parents that their child's presentation may be due to a learning disability, a developmental language disorder, or autism. For some children, I also consider early trauma, including neglect, as a possible causative factor. But parents have largely only been concerned up to that point about autism and have rarely considered other possible diagnoses. That their child may have intellectual disability, for example, often comes as a shock.</p><p>This is not a surprise, as one could be forgiven for thinking in the current discourse, that the only causes of neurodivergence are autism or attention-deficit/hyperactivity disorder (ADHD). Care pathways are often designed to diagnose one or other of these conditions, often in isolation, with little apparent thought given to the differential diagnosis. We don't talk about diagnostic pathways for children presenting with communication challenges or difficulties with attention. And the outcome is often dichotomous – your child either has, or has not, got autism or ADHD.</p><p>Quite apart from the clinical nonsense of completely separate processes for diagnosing autism or ADHD, given there may be considerable overlap of difficulties and the conditions may co-occur, diagnostic assessments should surely consider which of a list of all possible differential diagnoses are most likely. A child with a limp is not told they don't have cerebral palsy, so no further explanation is required. Not only does the current system not give equal weight to the consideration of other diagnoses, but we risk giving the wrong diagnosis.</p><p>A UK study<span><sup>1</sup></span> found that developmental language disorder affected over 7.5% of children in the early school years, in contrast to language disorders associated with all other neurodisabilities (including autism) where the prevalence was 2.3%. There is significant impact on these children which may continue into adulthood, but a recent research priority setting exercise by the UK Royal College of Speech and Language Therapists illustrates the lack of evidence base in this condition (https://www.rcslt.org/wp-content/uploads/2025/09/DLD-Research-Priority-Phase-2-Report.pdf).</p><p>Intellectual disability with or without co-occuring conditions such as autism has a long-term impact for an individual and failing to identify this as an issue for the child may lead to them being denied appropriate services as an adult. DSM-5 diagnostic criterion E for autism spectrum disorder states: ‘These disturbances are not better explained by intellectual disability or global developmental delay’ (https://psychiatryonline","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":"68 3","pages":""},"PeriodicalIF":4.3,"publicationDate":"2025-12-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/dmcn.70107","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145745360","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":"Data-driven neurocognitive surveillance and screening approaches in pediatric sickle cell disease.","authors":"Jeffrey Karst, Meghan Miller","doi":"10.1111/dmcn.70121","DOIUrl":"https://doi.org/10.1111/dmcn.70121","url":null,"abstract":"","PeriodicalId":50587,"journal":{"name":"Developmental Medicine and Child Neurology","volume":" ","pages":""},"PeriodicalIF":4.3,"publicationDate":"2025-12-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145745383","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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