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PurposeThe purpose of this study was to evaluate inter-rater reliability and validity of a proposed functional outcome battery for clinical trials in children with Sturge-Weber syndrome (SWS).MethodsTen children were evaluated twice on the same day using a series of functional outcome measures selected for sensitivity to the range of age and function of children with SWS: Modified Rankin Scale, Pediatric Evaluation of Disability Index, Modified House Functional Classification, and a modified version of the Erhardt Developmental Prehension Assessment. Inter-rater reliability was calculated, and criterion validity was explored through correlations with the Sturge-Weber Syndrome-Neurological Rating Score (SWS-NRS).ResultsInter-rater reliability was high across all measures. Correlations were identified between the SWS-NRS and the study measures.ConclusionsThe proposed battery of functional outcome measures captures child's functioning at the levels of impairment, activity and participation and is robust to evaluation by different raters and across sessions on the same day. This battery is expected to be sensitive to treatment-related changes in qualitative patterns of hand use, functional skills, and/or change in independence in daily living.

Constraint induced movement therapy is an established, evidence-based intervention for children with hemiplegia. This case series describes the feasibility and clinical opportunities of using a hybrid telehealth and onsite model to deliver pediatric constraint induced movement therapy during the COVID-19 pandemic. These cases support that a hybrid model had a similar effect on upper extremity improvement compared to a traditional, in-person model and may be an option when access to in-person care is not available. [ABSTRACT FROM AUTHOR]

A single-group pre- and post-test design was used to evaluate functional outcomes of a constraint-induced movement therapy (CIMT) protocol implemented in an outpatient therapy center. The participants were 29 children with hemiplegia, ages 1.6-19.1 years old. The less-involved upper limb was placed in a cast that was worn 24 hr a day, 7 days a week. Individual therapy sessions took place 5 days/week. Children received 3 or 6 hr therapy sessions for 16-19 days followed by 2-5 days in which bimanual tasks were performed. Outcomes were assessed at baseline and following CIMT. Statistically significant gains were made on the Melbourne Assessment of Unilateral Upper Limb Function, Quality of Upper Extremity Skills Test (except the Protective Extension subtest), Assisting Hand Assessment, and the Canadian Occupational Performance Measure. The effect sizes varied from 0.46 to 0.70 indicating a moderate effect size. The results support the effectiveness of CIMT provided through a center-based program. (Contains 2 tables and 4 figures.)