Traumatic brain injury (TBI) is a major cause of short- and long-term impairment in many aspects of life in children and adolescents. In addition to functional, cognitive, psychological, and developmental impairments and TBI-related symptoms such as irritability, headaches, and/or sleep disturbances, individuals with TBI suffer from decreased health-related quality of life (HRQoL). Since no TBI-specific HRQoL instrument exists in the pediatric setting, the Quality of Life after Brain Injury - kids and adolescents (QOLIBRI-KID/ADO) questionnaire for children and adolescents after TBI was recently developed by von Steinbüchel et al. (2023; https://doi.org/10.3390/jcm12154898). In addition, the German translation of two age-adapted versions of the Post-Concussion Symptoms Inventory (PCSI-SR8/-SR13) was developed and validated. This instrument measures the extent of post-concussion symptoms in children and adolescents, which can have a strong impact on HRQoL.
The question of whether a patient's questionnaire scores deviate from the healthy norm can be answered by using the scores of a comparable healthy reference population. Since these values do not yet exist for either the QOLIBRI-Kid/Ado or the PCSI, the aim of this research project is to establish reference values for both instruments and to make them available to clinicians and researchers.
More than 2000 children (8-12 years) and adolescents (12-17 years) from the German general population participated in the study. The QOLIBRI-KID/ADO, its short version QOLIBRI-KID/ADO-OS and the PCSI were administered online to the participants in an adapted form.
A Shiny app with reference value tables is available at https://reference-values.shinyapps.io/Tables_Reference_values/.
- To examine the applicability of the questionnaires in German pediatric samples from the general population.
- To examine the comparability of the construct assessment between children and adolescents with and without TBI as a prerequisite for the establishment of reference values.
- To determine the factors influencing questionnaire scores for further stratification of reference values.
- To derive reference values for subgroups (e.g., age groups, gender, health status) using percentiles.
The project is funded by the Dr. Senckenbergische Stiftung (Germany), Bürgerhospital Frankfurt am Main - Clementine Kinderhospital, Nibelungenallee 37–41, 60318, Frankfurt am Main.
The study was conducted in accordance with all relevant laws of Germany, including but not limited to the ICH Harmonized Tripartite Guideline for Good Clinical Practice ("ICH GCP") and the World Medical Association Declaration of Helsinki ("Ethical Principles for Medical Research Involving Human Subjects"). The Ethics Committee of the University Medical Center Göttingen has approved the studies (application number 19/4/18).
The data presented in this project are available upon request. Data are not publicly available for reasons of data protection.