Basalt Rehabilitation Center, Department of Innovation, Quality and Research, 2543 SW The Hague, The Netherlands.
Department of Occupational Therapy, Tufts University, Medford, MA 02155, USA.
Int J Environ Res Public Health. 2021 Feb 8;18(4):1625. doi: 10.3390/ijerph18041625.
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 = < 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.
提高参与度是门诊康复治疗的一个重要目标。关于获得性脑损伤（ABI）儿童和青少年的参与限制的知识有限，并且对于门诊康复环境中患者和家长之间观点的差异知之甚少。本研究旨在描述 ABI 患儿/青少年（5-24 岁）的参与限制，并探讨患者和家长观点之间的差异。在 10 个康复中心入院时，患者和家长被要求完成儿童和青少年参与量表（CASP；评分 0-100；分数越低表示限制越多）和与损伤/患者/家庭相关的问题。将 CASP 评分进行分类（完全/有些受限/受限/非常受限的参与）。使用 Wilcoxon 符号秩检验比较患者/家长报告的结果。共有 223 名患者和 245 名家长参与（209 对样本）。患者的中位年龄为 14 岁（IQR；11-16），135 名女性（52%），195 名患有创伤性脑损伤（75%）。患者报告的 CASP 中位数评分为 82.5（IQR：67.5-90），家长报告的中位数评分为 91.3（IQR：80.0-97.5）（差异<0.05）。58 名患者（26%）和 25 名家长（10%）的评分被归类为“非常受限”。26%的 ABI 康复后儿童和青少年的“非常受限”参与。总的来说，家长对孩子的参与评价要好于患者自己。量化 ABI 后的参与限制并考虑两个观点对门诊康复治疗很重要。
