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The aim of this study was to co-develop research priorities and identify meaningful research questions with a diverse group of stakeholders representing the CP community for implementation in subsequent research activities. The overarching aim of this research was to 1) Understand the mobility experiences, supported mobility device (SMD) use, and desired participation outcomes of people with cerebral palsy (CP) across the lifespan; and 2) Describe how perspectives of rehabilitation care and professional resources may influence mobility decision-making processes and outcomes. A three-round modified Delphi consensus study was conducted with a stakeholder advisory panel consisting of three adults with CP, two parents of children with CP, and four SMD providers. The advisory panel identified 11 unique topical categories focused on SMD selection and use, stratified by age group and stakeholder role. Questions or statements within each category were ranked, and top consensus and concordance statements were retained, reviewed, and refined for use in a co-developed focus group guide. Priorities were identified in three main groupings: (1) Age/GMFCS level/Environment-related; (2) Individual with CP/Caregiver need-related; and (3) Clinician/provider partnership-related. A modified Delphi process was a useful tool for stakeholders in co-developing research priorities related to SMD use across the lifespan. Drawing on the lived expertise of stakeholders is important in facilitating improved research translation in the CP community. Routine incorporation of stakeholder voices in research and clinical practice can critically inform teams without lived experience of cerebral palsy to co-create meaningful priorities and focus areas for supportive mobility device provision and use from a lived perspective. Stakeholders identified that access to trial equipment, device adaptability, provider knowledge and training, and a focus on the presence or absence of shared decision-making are among the top research priorities when engaging with individuals with cerebral palsy who use supportive mobility devices. Given the heterogeneous nature of cerebral palsy and evolving mobility needs for individuals across different Gross Motor Function Classification System levels, a lifespan perspective and future-oriented approach to supportive mobility device research and clinical practice are crucial to address device design and implementation as well as barriers to quality provision practices. [ABSTRACT FROM AUTHOR]

Aim: To examine whether designed‐to‐be‐rigid ankle–foot orthoses and footwear combinations with individualized alignment and footwear designs (AFO‐FC/IAFD) would be more effective than designed‐to‐be‐rigid AFO with non‐individualized alignment and footwear designs (AFO‐FC/NAFD) in children with cerebral palsy (CP). Method: Nineteen children with bilateral spastic CP were randomized to AFO‐FC/NAFD (n = 10) or AFO‐FC/IAFD (n = 9) groups. Fifteen were male, average age 6 years 11 months (range 4 years 2 months–9 years 11 months), classified in Gross Motor Function Classification System levels II (n = 15) and III (n = 4). The Pediatric Balance Scale (PBS), Gait Outcomes Assessment List (GOAL), Patient‐Reported Outcomes Measurement Information System (PROMIS), and Orthotic and Prosthetic Users' Survey (OPUS) measures of satisfaction were collected at baseline and after 3 months' wear. Results: Compared with the AFO‐FC/NAFD group, those with AFO‐FC/IAFD demonstrated greater change in PBS total scores (mean 12.8 [standard deviation 10.5] vs 3.5 [5.8]; p = 0.03) and GOAL total scores (3.5 [5.8] vs −0.44 [5.5]; p = 0.03). There were no significant changes in OPUS or PROMIS scores. Interpretation: After 3 months, individualized orthosis alignment and footwear designs had a greater positive effect on balance and parent‐reported mobility than a non‐individualized approach. No effect was documented for the PROMIS and OPUS. Results may inform orthotic management for ambulatory children with bilateral spastic CP. What this paper adds: Balance and parent‐reported mobility increased more over time for the ankle–foot orthoses and footwear combinations with individualized alignment and footwear designs (AFO‐FC/IAFD) group.Changes in balance over time suggest a therapeutic effect of the AFO‐FC/IAFD approach. [ABSTRACT FROM AUTHOR]

Individuals with Autism Spectrum Disorders (ASDs) are at increased risk for poor psychosocial outcomes as adults. We described community and social participation in adolescents with ASDs as they transitioned from adolescence to adulthood, and identified adolescent factors associated with community and social participation outcomes in adulthood. We performed a secondary data analysis of a nationally representative cohort using the National Longitudinal Transition Study 2 and observed a significant decrease in community participation from adolescence to adulthood (63 to 46 %); social participation remained stable. The presence of case management in adolescence was associated with increased community and social participation in adulthood. Case management may be crucial for optimal levels of participation among adults with ASDs.

Aim: Children and adolescents highly value their ability to participate in relevant daily life and recreational activities. The Activities Scale for Kids-performance (ASKp) instrument measures the frequency of performance of 30 common childhood activities, and has been shown to be valid and reliable. A revised and expanded 38-item ASKp (ASKp38) version has been reported in recent literature and is currently used in clinical research. The aim of this paper is to assess the factor structure and item-level statistics of the ASKp38. Method: Our study used factor analyses and Rasch analyses to determine the item-set dimensionality and to calculate item-level statistics respectively, for existing ASKp38 data from 200 children (104 males; 96 females; mean age 12y 7mo; SD 2y 8mo; range 6-20y) with physical disabilities. The children had a variety of physical impairments including cerebral palsy (n=105; range 8-13y), limb salvage (n=18; range 11-20y), arthrogryposis (n=13; 6-17y), and other, including individuals with spina bifida and spinal cord injury (n=64; 8-19y). Results: A two-factor model, with components of activities of daily living and play, most optimally fit the data. Item-fit statistics based on this two-factor model demonstrated adequate fit and content coverage. Interpretation: The ASKp38 appears to consist of two factors, defined as (1) activities of daily living and (2) play, and may be used to measure the frequency of activity performance on two corresponding subscales.

A standardized protocol for a pediatric heel-rise test was developed and reliability and validity are reported. Fifty-seven children developing typically (CDT) and 34 children with plantar flexion weakness performed three tests: unilateral heel rise, vertical jump, and force measurement using handheld dynamometry. Intraclass correlation coefficients (ICC) varied from 0.85-0.99 for reliability analyses in both participant groups. Construct validity analysis revealed a significant difference between groups (F = 44.57, p less than 0.05) and age-related differences among CDT; 5- to 8-year olds (mean = 15.2, SD = 5.4) performed fewer repetitions compared to 9- to 12-year olds (mean = 27.7, SD = 11.7) (p less than 0.05). Age explained 41% of the variance in the number of heel-rise repetitions. Correlations between the three tests (r = 0.56 to 0.66) provide evidence of convergent validity. The results indicate that the standardized protocol is both reliable and valid for use in 5- to 12-year-old children with and without plantar flexion weakness. (Contains 4 tables and 3 figures.)

Background: Pediatric patients with oncologic and hematologic diagnoses who experience newly acquired functional deficits during a hospitalization may benefit from intensive therapies. However, acute medical issues or disease treatment plans may prevent a safe transfer to the inpatient rehabilitation unit. Accordingly, Short-term Pediatric Rehabilitation Intensive Therapy (SPRINT), a 2-week inpatient intensive therapy program, was developed for pediatric patients on an acute care service. Objective: To assess functional outcomes of SPRINT participants, adverse events associated with the program, and measures of patients' fatigue, sadness, nervousness, and pain by parents and patients at the start and end of SPRINT. Design: Retrospective cohort study. Settings: Hematology-Oncology and Bone Marrow Transplant units at regional pediatric tertiary care hospital. Participants: Eighteen pediatric patients (50% female, age 1.9-17.8 years) participated in SPRINT, and 11 parents and 4 children completed questionnaires. Interventions: Not applicable. Main Outcome Measures: Functional outcomes of SPRINT participants measured by Caregiver Assistance section of the Pediatric Evaluation of Disability Inventory (PEDI), adverse events identified on chart review, and inquiry of participants' symptoms before and after SPRINT with a questionnaire. Results: Common diagnoses included leukemia and lymphoma (N = 9, 50%) and central nervous system tumor (N = 6, 33%). Deconditioning (N = 18, 100%) and peripheral neuropathy (N = 8, 44.4%) were common rehabilitation diagnoses. Significant gains were found in tasks in self-care and mobility domains of PEDI (all P < .05), as well as functional expression in social function domain (P = .03). No adverse events related to SPRINT participation were identified. There was no significant difference between pre- and post-SPRINT questionnaire responses. Conclusions: SPRINT is an alternative model for intensive rehabilitation care delivery. Data suggested that SPRINT participation was safe and resulted in significant gains in mobility, self-care, and functional expression for pediatric patients with hematologic and oncologic diagnoses while receiving acute care. No difference was found in questionnaire responses after SPRINT participation. [ABSTRACT FROM AUTHOR]