Assessing and categorizing health-related quality of life outcomes in children and youth with acquired brain injury in outpatient rehabilitation

INTRODUCTION: Young patients with acquired brain injury (ABI) often report diminished health-related quality of life (HRQoL) compared to healthy peers. Yet, this has not been investigated in a large multicenter outpatient-rehabilitation based cohort. Furthermore, a clear way to categorize HRQoL to better interpret scores is lacking, though this could be valuable for clinical use (i.e., for comparison with other populations). METHODS: This cross-sectional study used the PedsQL™ Generic Core Scales 4.0 questionnaire with 23 items to assess patients' HRQoL, where lower scores mean a more diminished HRQoL. Children (8-12 years), adolescents (13-17 years), and young adults (18-25 years) with ABI, referred to a Dutch rehabilitation center, were included. Patient characteristics were analyzed using descriptive statistics and mean (standard deviation [SD]). HRQoL scores were calculated per age group and subsequently categorized using reference data(means, SDs) from healthy peers. HRQoL was categorized as 1 ('better HRQoL than healthy peers', > + 1SD), 2 ('comparable HRQoL', -1SD to +1SD), 3 ('moderately diminished HRQoL', -1SD to -2SD), or 4 ('severely diminished HRQoL', < -2SD). RESULTS: Four hundred twenty-six young patients (aged 8-25 years) with ABI participated in the study; 233 were female (54.7%), and 334 had a diagnosis of traumatic brain injury (78.4%). Children, adolescents, and young adults had mean (SD) HRQoL total scores below age-specific Dutch healthy peer normative means (62.98 [14.39], 62.86 [16.82], and 59.34 [18.46], respectively). Based on the SD-based categorization using healthy peer reference data, 59% of children (55/93), 52% of adolescents (147/282), and 61% of young adults (31/51) were categorized in Category 4 ('severely diminished HRQoL' < -2SD relative to age-specific Dutch healthy peer norms). CONCLUSION: Measuring and categorizing HRQoL in outpatient rehabilitation may facilitate clinically meaningful interpretation of PedsQL scores by benchmarking to healthy peers, supporting shared decision-making at referral in young patients with ABI.