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:

completed 12/2024

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 was the final psychometric validation of the internationally first age-adapted instruments (Quality of Life after Brain Injury, "QOLIBRI") for use as a self-report and proxy measures of traumatic brain injury (TBI)-specific, health-related quality of life (HRQoL) in young (6–7 years, "KIDDY") and older children (8–12 years, "KID") and adolescents (13–17 years, "ADO").

Activities/Methods:

In 12 German-speaking centers, 409 TBI affected individuals and their parents were assessed online or in clinics using the first TBI-specific HRQoL measures (QOLIBRI-KIDDY/KID/ADO) and measures of other factors such as cognition, psychosocial and clinical aspects. TBI had to have occurred between three months and ten years previously. The internal consistency (Cronbach's Alpha, McDonald's Omega), test-retest reliability (intraclass correlation coefficient, ICC) and validity of the final QOLIBRI-KIDDY/KID/ADO questionnaires (self- and proxy report) were analyzed at the item and scale level. The factor structure was tested using confirmatory factor analyses, and the construct validity by means of its correlation with the generic Pediatric Quality of Life Inventory (PedsQL). Discriminant validity was examined using instruments for measuring anxiety, depression and post-concussion symptoms.

Results:

After aggregating two age versions, the final questionnaire contains 35 items for 8–17-year-olds and 23 items for 6–7-year-olds, covering six subscales/dimensions of HRQoL: Cognition, Self, Daily Life and Autonomy, Social Relationships, Emotions, and Physical Problems. Internal consistency is very good to excellent for the total scores, good to excellent for the subscales of all proxy reports and self-reports for 8–17-year-olds, and adequate for 6–7-year-olds. The ICCs indicate good test-retest reliability. The six-factor model was confirmed for children and adolescents aged 8 and over; the analyses for 6–7-year-olds are still pending. Moderate correlations between the QOLIBRI-KIDDY/KID/ADO questionnaires and the PedsQL indicate acceptable construct validity. The discriminant validity analyses show, for example, that 8–12-year-old children and especially girls report significantly lower HRQoL than adolescents and boys. This also applies in particular to patients with anxiety, depression, or post-concussion symptoms. As found in other pediatric studies, there is a low level of agreement between parents and children. Consequently, it is recommended that the self-report versions be used if the concerned children and adolescents are able to understand and answer the questions them-selves.

Importance in clinical practice: The worldwide first TBI- and age-specific QOLIBRI-KIDDY/KID/ADO questionnaires are now suitable for use in both clinical practice and research contexts, allowing the impact of TBI to be assessed on various dimensions of HRQoL in children and adolescents aged 6– 17, as well as their parents. This assessment can be conducted using self-report methods, as well as proxy reporting methods. The findings underline the necessity of earliest possible multidimensional assessments, particularly of TBI-specific HRQoL, and the implementation of personalized interventions that take age and gender disparities into account, as well as mental and post-concussion symptoms. This approach may potentially mitigate or avert the chronification of adverse short- and long-term con-sequences of TBI on HRQoL.

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