Quality of life after brain injury in children and adolescents questionnaire – validation of the proxy version (QOLIBRI-KID/ADO-Proxy)

The QOLIBRI-KID/ADO-Proxy is the first disease-specific health-related quality of life (HRQoL) proxy questionnaire developed for use in the field of pediatric traumatic brain injury (TBI), when children are unable to report their HRQoL themselves. Its psychometric properties in a German-speaking context are examined in two samples (development and validation). Dyads of 600 parents and their children (aged 8–17 years) were included. The 35-item questionnaire covers six dimensions (Cognition, Self, Daily Life and Autonomy, Social Relationships, Emotions, and Physical Problems). Results showed good to excellent internal consistencies, acceptable test-retest reliability, and low to fair parent-child agreement. Confirmatory factor analyses supported the one-level six-factor structure. In terms of construct validity, there was an overlap between the disease-specific and the generic HRQoL. Lower parent-reported HRQoL in children was associated with lower parental education, lower functional recovery (Study I), more recent TBI, and more severe depressive, anxiety, and post-concussion symptoms. Findings differed between the two studies in terms of age, gender, and TBI severity. Study I found more severe TBI linked to lower HRQoL in adolescents, while Study II indicated lower HRQoL ratings in girls. The QOLIBRI-KID/ADO-Proxy is recommended when individuals are unable to self-report their HRQoL.