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

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSION: The QOLIBRI-KID/ADO-Proxy is recommended when individuals are unable to self-report their HRQoL.