Development of the first set of instruments for the disease-specific recording of the health-related quality of life of children (HRQOL) and adolescents after traumatic brain injury (TBI): Quality of Life after Brain Injury-KIDS/ADOS

Status:

ongoing

Aims:

Small to extensive lesions after traumatic brain injury (TBI) can result in negative, often underestimated consequences for all dimensions of well-being and functionality. TBI can cause radical life changes for patients and relatives. Health-related quality of life (HRQOL) is an important indicator for evaluating results in the treatment and rehabilitation of people after TBI, especially those with mild TBI. The first applicant has developed a recognized and globally used instrument ("Quality of Life after Brain Injury", QOLIBRI) for adult patients. There is no such instrument for children and adolescents KIDS/ADOS. The aim of the project is the final development, psychometric testing and validation the first set of instruments for the disease-specific recording of the HRQOL from KIDS/ADOS to SHT. Three age-specific modules 5-7, 8-12, 13-17 years and a relative version are being developed.

Activities/Methods:

The final survey, psychometric testing and validation of 4 previously created questionnaire versions of the QOLIBRI-KIDS/ADOS for self-assessment by KIDS/ADOS and their relatives are carried out. Over 450 patients and their relatives are recruited, tested and interviewed at 17 centers and clinics across Germany. Neuropsychological, clinical, socio-demographic and psychosocial variables are recorded as covariates. The clinical variables are taken from medical records in the institutions participating in the recruitment, the neuropsychological functioning is recorded by validated tests. This cognitive screening and the surveys are carried out in the recruiting centers with the cooperation of the institutes making the application (Göttingen and Greifswald), as is the pseudonymisation of the data. After a comprehensive psychometric test and final adaptation as part of an expert meeting, the final versions of 4 forms (3 age-specific versions, 1 relative version) are available for publication and use in clinics, practice and research.

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