Academic outcome, participation and health-related quality of life following childhood severe traumatic brain injury: Results of a prospective longitudinal study: The seven-year follow-up of the TGE cohort

Abstract

Childhood traumatic brain injury (TBI) is the first cause of death and acquired disability and it represents a major public health issue. Childhood severe TBI can lead to motor, cognitive, behavioural and social cognition deficits, which have consequences on academic achievement, social integration, participation and quality of life. Consequences may only appear after a delay, when the skills are supposed to be fully developed. The aim of this study was to prospectively assess academic outcome, health-related quality of life (HRQoL), amount of ongoing care and participation, following childhood severe traumatic brain injury (TBI) over 7–8 years post-injury, in comparison with a matched uninjured control group. Sixty-five children, aged 0–15 years, consecutively admitted in a single trauma center over a 3-year period for severe non-inflicted TBI were included in a prospective longitudinal study. At 7-8 years, they were compared with a matched control group regarding schooling modalities, amount of ongoing care, and standardized questionnaires of HRQoL (PedsQL, including fatigue module), and participation (Child and Adolescent Scale of Participation – CASP). Family socio-economic status (SES) was assessed by parental education level. After a mean delay of 7.7 years, 39 patients participated in the study (60% of the initial sample; 66% boys; mean coma duration: 6.6 days; SD = 4.83; mean age at injury: 7.6 years, SD = 4.72; mean age at assessment: 15.3 years, SD = 4.46, range 7.2–22.2), with no significant differences between participants and non-participants regarding demographic and severity factors, or initial intellectual ability). Only 62% of the TBI group was attending mainstream education (as opposed to 100% of controls). The amount of ongoing rehabilitation was high (35.3% speech-language therapy, 26.4% occupational therapy; 17.6% physiotherapy). Self-reported HRQoL was significantly lower in the TBI than in the control group [71.1; 95% IC 64.8–77.5 versus 83.9; 95% IC 79.3–88.4; P = 0.0026], including the fatigue module [61.1; 95% IC 54.6–67.5 versus 77.4; 95% IC 71.9–82.8; P = 0.0005]. Parent ratings of participation were relatively good but significantly lower than those of controls [86.4; 95% IC 81.4–91.3 versus 96.3; 95% IC 94.6–98.1; P = 0.0002]. Severe childhood TBI leads to severe and long-standing impairments, evident several years post-injury, with consequences on school integration, independence, participation and HRQOL.