Parent-reported family impact in children and young adults with acquired brain injury in the outpatient rehabilitation setting.

Purpose: To increase knowledge/awareness on family impact (FI) after acquired brain injury (ABI) in rehabilitation settings, it is essential to investigate the associations between patient-functioning and impact on families. This has been explored in hospital-based cohorts, but not in rehabilitation settings.Methods: A cross-sectional, multi-center study among parents of children/young adults (aged 5-24 years) with ABI referred to rehabilitation was performed. Patient/injury/family-characteristics were noted, and parents completed the PedsQL™Family-Impact-Module and PedsQL™generic-core-4.0 to assess FI and health-related quality of life (HRQoL). Univariate- and multivariable-regression analyses were performed to investigate associations between HRQoL/patient/injury/family-related factors and FI.Results: 246 families participated; patients' median age was 14 year (IQR 11-16), 65 had non-traumatic-brain-injury (nTBI) (26%), 127 were female. FI was found to be considerable (median FIM-score 71.9, IQR:60-85). Especially referral to rehabilitation >6 months after onset, diminished patients' mental/emotional health and HRQoL (child/family factors), and premorbid problems were associated with higher FI.Conclusions: In this rehabilitation cohort, pediatric ABI caused considerably higher FI than in hospital-based studies with referral to rehabilitation >6 months, diminished child/family factors and presence of premorbid problems increasing FI. Assessing and monitoring FI and its associated factors enables professionals to individualize treatment, psychoeducation, support and follow-up.

Factors related to fatigue after paediatric acquired brain injury (ABI).

OBJECTIVE: To assess the degree of fatigue in children and youth after traumatic and non-traumatic brain injury (TBI and NTBI) and related factors. METHOD: Follow-up study including patients with a hospital-based diagnosis of acquired brain injury (ABI), aged 4-20 years at onset and their parents. Parents and children (dependent on age) completed the Paediatric Quality of Life Inventory™ Multidimensional Fatigue Scale (PedsQL™ MFS), which measures general fatigue (GF), sleep/rest fatigue (SRF) and cognitive fatigue (CF). Additional assessments included the Child & Family Follow-up Survey (CFFS) and PedsQL™ 4.0 General Core Scales and sociodemographic and disease characteristics. RESULTS: Eighty-eight parents completed the PedsQL™ MFS 24-30 months after diagnosis, with 49/88 patients (56%) completing the child version. The median age of the patients was 11 years (interquartile range [IQR] = 7). There were 69 patients with TBI (16% moderate/severe TBI) and 19 patients with NTBI (16% moderate/severe NTBI). The median parent-reported and child-reported PedsQL™ MFS Total Scale Scores were 76.5 (SD = 16.4) and 78.5 (12.9), respectively (Spearman r = 0.450, p = 0.001). Apart from NTBI, increasing age and a single-parent household were significantly associated with more fatigue according to the parent-reported PedsQL™ MFS Total Score (and/or one or more sub-scale scores). CONCLUSION: Two years after onset, in particular, the parent-reported fatigue after NTBI was considerable. Moreover, older children and children from a single-parent household were found to have higher fatigue levels.

Youth with acquired brain injury in The Netherlands: a multi-centre study.

UNLABELLED: Abstract Aim: To describe the occurrence and causes of acquired brain injury (ABI), including traumatic brain injury (TBI) and non-traumatic brain injury (NTBI), among Dutch youth and estimate incidence rates from the data. PATIENTS: Aged 1 month-24 years, hospital diagnosed with ABI in 2008 or 2009. METHODS: In three major hospitals in the southwest region of the Netherlands patients with ABI were retrospectively identified by means of diagnosis codes and specific search terms. RESULTS: One thousand eight hundred and ninety-two patients were included: 1476 with TBI and 416 with NTBI. Causes of TBI and NTBI varied among the age groups 0-4, 5-14 and 15-24 years, with accidents (in traffic or at home) being the most common cause of TBI and hypoxic-ischemic events for NTBI, in all groups. The estimated yearly incidence rates per 100 000 for mild-moderate-severe TBI were 271.2-15.4-2.3 (0-14 years) and 261.6-27.0-7.9 (15-24 years), for mild-moderate-severe NTBI they were 95.7-11.8-1.3 (0-14 years) and 73.8-6.1-1.6 (15-24 years), respectively. CONCLUSION: More than 15% of TBI and NTBI in children and youth is classified as moderate or severe, with causes of TBI and NTBI varying among age groups. Based on the occurrence of ABI in three hospitals, the estimated incidence of ABI in children and youth in the southwest region of the Netherlands is substantial.

A longitudinal follow-up study of parent-reported family impact and quality of life in young patients with traumatic and non-traumatic brain injury.

PURPOSE: Brain injuries (traumatic-/nontraumatic, TBI/nTBI) in young patients may lead to problems e.g., decreased health-related quality of life (HRQoL), and causes family impact. Knowledge regarding the family impact and the relationship with patients' HRQoL over time is scarce. This follow-up study describes family impact/HRQoL and their mutual relationship in young patients (5-24 years) after TBI/nTBI. MATERIALS AND METHODS: Parents of patients that were referred to outpatient rehabilitation completed the PedsQL™Family-Impact-Module questionnaire to assess the family impact and the parent-reported PedsQL™Generic-core-set-4.0 to assess patients' HRQoL (lower scores: more family impact/worse HRQoL). Questionnaires were completed at the time of referral to rehabilitation (baseline) and one/two years later (T1/T2). Linear-mixed models were used to examine family impact/HRQoL change scores, and repeated-measure correlations (r) to determine longitudinal relationships. RESULTS: Two-hundred-forty-six parents participated at baseline, 72 (at T2), median patient's age at baseline was 14 years (IQR:11-16), and 181 (74%) had TBI. Mean (SD) PedsQL™Family-Impact-Module score at baseline was 71.7 (SD:16.4) and PedsQL™Generic-core-set-4.0: 61.4 (SD:17.0). Over time, PedsQL™Family-Impact-Module scores remained stable, while PedsQL™Generic-core-set-4.0 scores improved significantly(p < 0.05). A moderately strong longitudinal correlation was found between family impact&HRQoL (r = 0.51). CONCLUSIONS: Family impact does not tend to decrease over time but remained a considerable problem, although patients' HRQoL improved. Next to focusing on patients' HRQoL, it remains important to consider family impact and offer family support throughout rehabilitation.IMPLICATIONS FOR REHABILITATIONThis longitudinal study found that in young patients with traumatic brain injury (TBI) or non-traumatic brain injury (nTBI) referred for rehabilitation there is a considerable impact on the family until two years after referral, whereas the patients' health-related quality of life (HRQoL) improved significantly.Improvements in patients' quality of life status may not automatically lead to a decrease of family impact.Rehabilitation clinicians should monitor the impact on the family over time and provide long-term family support with special attention to parental worrying when needed.Clinicians should be aware that, despite significant differences between the clinical characteristics of patients with TBI and nTBI, the courses of family impact are very similar.

Physical activity after mild traumatic brain injury: What are the relationships with fatigue and sleep quality?

OBJECTIVES: To determine self-reported physical activity (PA) levels and relationships with fatigue and sleep quality in adolescents and young adults after mild traumatic brain injury (mTBI). SETTING: Follow-up 6-18 months after visiting the emergency department of one of 2 general hospitals. PARTICIPANTS: Forty-nine adolescents and young adults aged 12-25 years (mean 18.4 years), 22 (45%) male with mTBI. DESIGN: Cross-sectional survey study. MAIN OUTCOME MEASURES: The Activity Questionnaire for Adults and Adolescents (AQuAA), with results dichotomized into meeting or not meeting Dutch Health Enhancing PA recommendations (D-HEPA), the Checklist Individual Strength (CIS, 4 subscores) and the Pittsburgh Sleep Quality Index (PSQI, total score) were administered. RESULTS: Twenty-five participants (51%) did not meet the D-HEPA recommendations. After adjusting for sex, BMI and age, not meeting the recommendations was associated with a higher CIS Total Score (OR 1.04 95%CI 1.01, 1.07) but not with PSQI Total Score (OR 0.99, 95%CI 0.80, 1.21). CONCLUSIONS: In adolescents and young adults with mTBI the level of reported PA is associated with fatigue but not with sleep quality. It remains to be established whether interventions aiming to promote PA should primarily be focused on PA or fatigue or both.