Acquired brain injury (ABI) may cause fatigue and participation restrictions in young patients. However, knowledge regarding the course of these problems over time is lacking. This study aims to... Show moreAcquired brain injury (ABI) may cause fatigue and participation restrictions in young patients. However, knowledge regarding the course of these problems over time is lacking. This study aims to describe the course of fatigue and participation and their relationship over time in an observational two-year follow-up study among patients(5-24 years) with ABI referred for outpatient rehabilitation and their parents. Patients/parents completed the PedsQL (TM) Multidimensional-Fatigue-Scale(PedsQL (TM) MFS, totalscore/3-domains) and the Child/Adolescent-Scale of Participation(CASP, totalscore/4-domains). Scores ranged from 0-100: lower scores = more fatigue/participation problems. Linear mixed models and repeated measures correlations were used to determine the course over time (change-scores/95%CI) and correlations between fatigue/participation. At baseline, 223 patients/246 parents participated with 94/104 at either T1, T2 or both. Median age was 15 years (IQR:12-17), 74% had a traumatic brain injury. Mean(SD) patient/parent-reported PedsQL (TM) MFS totalscores(baseline) were: 50.3(17.3) and 53.8(19.1), respectively. CASP totalscores were 78.0(16.4) and 87.1(13.6). Over time, patient-reported scores improved significantly (fatigue: + 8.8 (2.9;14.7), p < 0.05)/participation: + 10.5 (6.3;14.7), p < 0.05)). Similar results were found regarding parent-reported fatigue: + 8.7 (3.4;13.9), p < 0.05 but not regarding participation. Two years later, fatigue was still considerable(patients:59.1/parents:62.5). Moderate/fair correlations between fatigue/participation over time were found. Fatigue and participation in young patients with ABI improved two years after referral to rehabilitation. However, fatigue remained a considerable problem. Show less
Allonsius, F.; Kloet, A. de; Bedell, G.; Markus-Doornbosch, F. van; Rosema, S.; Meesters, J.; ... ; Holst, M. van der 2021
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... Show moreImproving 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. Show less
Holst, M. van der; Groot, J.; Steenbeek, D.; Pondaag, W.; Nelissen, R.G.H.H.; Vlieland, T.P.M.V. 2018
