Developmental Medicine and Child Neurology最新文献

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.

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 (R² _adj = 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.

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.

Clinicians and families regularly enter into a process of shared decision-making. Seldom, if ever, however, is the critical question of time usage, or, more specifically, time-related burdens, accounted for when establishing goals and outcome measures. Time-related burdens are not included, for instance, as an outcome measure in cerebral palsy research-something which may have profound effects about which we are unaware. By contrast, in the field of oncology, time-related burdens, or, more technically, what has been termed time toxicity, has been increasingly studied. Building on that work, we seek to apply the concept of time toxicity to people with disabilities who interface with healthcare at great frequency.

Aim: To investigate the prevalence of eating and drinking difficulties as classified with the Eating and Drinking Ability Classification System (EDACS) in a large population-based cohort of children with cerebral palsy (CP) at all levels of motor function, and how EDACS classifications relate to undernutrition.

Method: This was a cross-sectional study based on data from the Swedish CP follow-up programme of children aged 19 years and younger. EDACS ratings were compared to z-scores for weight for age and height for age, calculated using standard references. Regression models were used to estimate how height for age was affected by EDACS levels when controlling for gross motor function and CP subtype.

Results: We included 2280 children with CP (945 females, 1335 males), median age 10 years 2 months. Almost a third (30.6%) had safety concerns during mealtimes (EDACS levels III-V). Most children (57.5%) could eat and drink independently, 20.2% required assistance, and 22.4% were totally dependent. One in five had undernutrition (19.9%) and there was an association between EDACS level and nutrition (p < 0.001). Height for age decreased from EDACS level II and also when controlling for gross motor function and CP subtype.

Interpretation: Almost one in three children with CP have dysphagia. Growth is affected in children with CP already from EDACS level II.

Aim: To assess the interrater reliability, concurrent validity, and responsiveness of the Children's Eating and Drinking Activity Scale (CEDAS).

Method: Interrater reliability was assessed using an online questionnaire completed by speech and language therapists working in hospital and community settings. Participants (n = 39) applied CEDAS to 12 vignettes. Interrater reliability was calculated using Krippendorff's alpha (α). Additionally, CEDAS was applied retrospectively to consecutive speech and language therapy referrals at a single hospital (n = 85, median age 11 years 2 months, range 1 week-17 years 1 month). Responsiveness was assessed by comparing median CEDAS scores at referral, after initial speech and language therapy assessment, and at discharge. The Functional Status Scale (FSS) feeding domain was used to evaluate concurrent validity.

Results: Interrater reliability was excellent (Krippendorff's α = 0.927). CEDAS was responsive to change, with expected score increases seen between referral and discharge (Z = -4.37, p < 0.001), and initial assessment and discharge (Z = -3.23, p < 0.001). Strong concurrent validity was established with the FSS (r_s = -0.77 to -0.99, p < 0.003).

Interpretation: CEDAS demonstrates excellent interrater reliability across clinical settings. It is a responsive tool with established construct validity when used in an acute hospital setting.

Aim: To describe individuals with cerebral palsy (CP) followed at the SARAH Network of Rehabilitation Hospitals in Brazil.

Method: This was a multicentre, cross-sectional, descriptive study. Individuals diagnosed analysis (n = 17 771).

Results: The mean age at the first visit was 3 years 5 months (SD = 3 years 1 month), with 55.3% participants being male. At birth, 52.0% had normal weight and 50.3% were born at term. Perinatal risk factors were the most prevalent: preterm birth (48.4%); low birthweight (48.0%); and hypoxic-ischaemic encephalopathy (40.1%). Spastic CP (75.5%), bilateral involvement (75.9%), and Gross Motor Function Classification System levels III to V (57.8%) were predominant.

Interpretation: Demographic and clinical data are comparable with previous reports from low- and middle-income countries (LMICs). Despite clinical advances in prenatal and perinatal care, most individuals with CP had severely affected motor function. As the prevalence of CP is higher in LMICs, and considering the direct influence of psychosocial factors on children with CP, it is essential to support multicentre and national registries in LMICs to adapt family-centred rehabilitation planning guidelines.