Participation Restrictions among Children and Young Adults with Acquired Brain Injury in a Pediatric Outpatient Rehabilitation Cohort: The Patients' and Parents' Perspective.

Florian Allonsius,Menno Van Der Holst,Frederike Van Markus-Doornbosch,Stefanie Rosema,Gary Bedell,Jorit Meesters,Thea Vliet Vlieland,Arend De Kloet

doi:10.3390/ijerph18041625

Abstract

Improving participation is an important aim in outpatient rehabilitation treatment. Knowledge regarding participation restrictions in children and young adults with acquired brain injury (ABI) is scarce and little is known regarding the differences in perspectives between patients and parents in the outpatient rehabilitation setting. The aims are to describe participation restrictions among children/young adults (5–24 years) with ABI and investigating differences between patients’ and parents’ perspectives. At admission in 10 rehabilitation centers, patients and parents were asked to complete the Child and Adolescent Scale of Participation (CASP; score 0–100; lower score = more restrictions) and injury/patient/family-related questions. CASP scores were categorized (full/somewhat-limited/limited/very-limited participation). Patient/parent-reported outcomes were compared using the Wilcoxon signed-rank test. 223 patients and 245 parents participated (209 paired-samples). Median patients’ age was 14 years (IQR; 11–16), 135 were female (52%), 195 had traumatic brain injury (75%). The median CASP score reported by patients was 82.5 (IQR: 67.5–90) and by parents 91.3 (IQR: 80.0–97.5) (difference = p < 0.05). The score of 58 patients (26%) and 25 parents (10%) was classified as ‘very-limited’. Twenty-six percent of children and young adults referred for rehabilitation after ABI had “very-limited” participation. Overall, parents rated their child’s participation better than patients themselves. Quantifying participation restrictions after ABI and considering both perspectives is important for outpatient rehabilitation treatment.

Highlights

Notable results were found in the current analyses among the outpatient rehabilitationbased population, which were not found in previous studies [36,41]
The majority of children and young adults with a mild Traumatic brain injury (TBI) reported scores in the “very limited” category. These results suggest that the TBI population experience participation restrictions no matter the initial TBI severity
Late referral to outpatient rehabilitation was common across all participation category groups based on the Child and Adolescent Scale of Participation (CASP) total scores, in example; “somewhat limited participation category”–“very limited participation category”

Summary

Introduction

Acquired brain injury (ABI) refers to irreversible damage to the brain which either has a traumatic cause; i.e., caused by external trauma (TBI) or a non-traumatic cause (nTBI); i.e., by internal causes [1]. It is a common diagnosis in children and young adults. The estimated yearly incidence rates in the Netherlands per 100,000 children and young adults are 288.9. Due to natural brain adaptation, the majority of children and young adults with ABI will recover within the first year after brain injury [3]. On average, approximately 30% have persisting problems, and this group may benefit

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Conclusion