Developmental Medicine and Child Neurology

AIM: To describe the development of an observational measure of spontaneous independent joint motion in infants with spastic cerebral palsy (CP), the Baby Observational Selective Control AppRaisal (BabyOSCAR), and to test its convergent validity and reliability. METHOD: A retrospective sample of 75 infants (45 with spastic CP and 30 without CP) at 3 months of age were scored with the BabyOSCAR and compared with diagnosis of spastic CP, limbs affected, and Gross Motor Function Classification level at 2 years of age or later for convergent validity using t-tests, Kruskal-Wallis tests, and Spearman's rank correlation coefficients...

AIMS: To explore the participation experiences of adolescents and young adults with cerebral palsy (CP) in key life situations of young adulthood and investigate the impact of a government-funded, disability insurance scheme on participation and health service access. METHOD: We conducted a qualitative descriptive study using semi-structured interviews. Sixteen young people with CP (aged 16-30 years; mean age = 24 years 4 months) participated...

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AIM: To describe the rates of stroke and craniocervical vasculopathy progression in children with posterior fossa malformations, hemangioma, arterial anomalies, coarctation of the aorta/cardiac defects, and eye abnormalities (PHACE) syndrome. METHOD: A single-center, retrospective natural history study of children with PHACE syndrome. Clinical and sequential neuroimaging data were reviewed to study the characteristics and progression of vasculopathy and calculate the rates of arterial ischemic stroke (AIS) and transient ischemic stroke (TIA)...

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AIM: To identify cerebral palsy (CP) variables collected in CP registries from high-income countries (HICs) and low- and middle-income countries (LMICs) to assist with the development of a regional CP registry relevant to the African region. METHOD: A systematic search of online databases to identify peer-reviewed publications and grey literature about CP risk-factor variables, using Ovid MEDLINE, Embase Ovid, CINAHL, and Google Scholar. RESULTS: A total of 197 studies published from global CP registries between 1990 and 2023 were identified...

AIM: To describe current home participation (frequency, involvement) and caregiver's desire for change in home participation of children and adolescents with Down syndrome, as well as home environmental factors, and to explore the associations of personal and environmental factors with current participation and caregiver's desire for change. METHOD: Eighty-two caregivers (mean age = 45 years 10 months) of children and adolescents with Down syndrome (mean age = 10 years 7 months) were surveyed about the child's home participation and environmental factors using the Participation and Environment Measure-Children and Youth...

AIM: To describe the aetiological risk factors, clinical characteristics, access to rehabilitation, and educational status of children with cerebral palsy (CP) in Suriname. METHOD: Hospital-based surveillance of children with CP aged younger than 18 years was conducted at the Academic Hospital Paramaribo, Suriname (known as the Suriname CP Register [SUR-CPR]). Data were collected on sociodemographic characteristics, aetiological risk factors, clinical characteristics, rehabilitation, and educational status...

AIM: To increase understanding regarding the experiences and values of young adults with cerebral palsy (CP), and their caregivers, regarding pediatric rehabilitation-related care, including perceived barriers and potential facilitators to transition to adult care. METHOD: This was a qualitative descriptive study that used 20 semi-structured interviews (13 caregivers and seven patient-caregiver dyads). RESULTS: We identified four major themes: (1) the value and security of long-term relationships; (2) feeling 'rudderless' navigating the logistics of transition; (3) differences in pediatric versus adult models of care; and (4) perceived lack of provider expertise and comfort in adult care settings...

AIM: To compare the predictive values of the General Movements Assessment (GMA) and the Standardized Infant NeuroDevelopmental Assessment (SINDA) neurological scale for atypical neurodevelopmental outcome in 3-month-old at-risk infants. METHOD: A total of 109 infants (gestational age 30 weeks; range: 24-41; 52 males) attending a non-academic outpatient clinic were assessed with the GMA and the SINDA at 3 (2-4) months corrected age. The GMA pays attention to the complexity of general movements and presence of fidgety movements...

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AIM: To examine socioeconomic, condition-related, and neuropsychological predictors of self-management trajectories in adolescents and young adults with spina bifida. METHOD: In this longitudinal study, participants completed the Adolescent/Young Adult Self-Management and Independence Scale interview. Socioeconomic status (SES), shunt status, lesion level, and executive functioning were assessed. Growth in self-management was estimated using linear mixed-effects models...

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