Family Impact of Acquired Brain Injury in Children and Youth

Objective: To assess the parental view on the impact of pediatric traumatic brain injury (TBI) and nontraumatic brain injury (NTBI) on the family and its determinants. Methods: Follow-up study including parents of children with a hospital-based diagnosis of acquired brain injury (ABI) aged 4-20 years at onset of ABI. Parents completed the Pediatric Quality of Life Inventory Family Impact Module (PedsQL FIM), which measures Parent Health-Related Quality of Life, Family Functioning, Communication, and Worry. Additional assessments included the Pediatric Stroke Outcome Measure (PSOM), the Child & Family Follow-up Survey (CFFS), PedsQL General Core and Multiple Fatigue Scales, and sociodemographic and disease characteristics. Results: Parents of 108 patients, median age 13 years (range 5-22), completed the questionnaires 24-30 months after diagnosis. There were 81 patients with TBI of whom 11 (14%) with moderate/severe TBI and 27 patients with NTBI of whom 5 (19%) with moderate/severe NTBI. The median PedsQL FIM Total Scale was 80.4 (SD 16.1). The PedsQL FIM Total Scale and 4 out of 5 Subscale Scores were statistically significantly better in the TBI group than in the NTBI group and in patients with severe NTBI than with mild/moderate NTBI. Moreover, in the total group, there were significant univariate associations between the FIM Total Scale and/or one or more Subscale Scores and age, preinjury patient health problems, and the PSOM, CFFS, PedsQL General Core, and Multiple Fatigue Scales. In the multivariable analysis, the FIM Total Scale was significantly associated with type and severity of injury and preinjury patient health problems. Conclusions: Two years after onset, the parent-reported that impact of ABI on the family as measured by the PedsQL FIM was considerable especially in patients with moderate/severe NTBI.