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Background: The assessment of the impact of pediatric traumatic brain injury (TBI) on the health-related quality of life (HRQoL) of the children and adolescents affected can be ameliorated by a disease-specific instrument. Such an instrument does not yet exist. This qualitative study investigates how children and adolescents after TBI subjectively perceive their HRQoL and whether and how this differs from the perspective of individuals without a history of TBI. Methods: Eight problem-centered interviews were conducted with 11 children and adolescents around four years after mild TBI and with eight children and adolescents around three years after moderate to severe TBI. Nine problem-centered interviews were conducted with 25 participants without a history of TBI. The interviews were recorded and transcribed verbatim. The statements were assigned to inductively and deductively derived categories relevant to the HRQoL of children and adolescents after TBI and compared with those of individuals without a history of TBI. Results: The HRQoL of children and adolescents after TBI tended to display both structural and content-related differences, independently of TBI severity, on several HRQoL dimensions, in contrast to the comparison group. For example, participants after TBI reported a broader range of negative emotions (such as worry, sadness, shame, and guilt), permanent physical impairments, felt that they were treated differently from others, and perceived cognitive limitations. Conclusions: The results of this qualitative study identified HRQoL dimensions that are relevant to children and adolescents after TBI and underlined the need for the development of a disease-specific instrument. [ABSTRACT FROM AUTHOR]

The subjective impact of the consequences of pediatric traumatic brain injury (pTBI) on different life dimensions should be assessed multidimensionally and as sensitively as possible using a disease-specific health-related quality of life (HRQoL) instrument. The development and psychometrics of the first such self-report questionnaire for children and adolescents after TBI are reported here. Focus group interviews with children, adolescents, and their parents, cognitive debriefing, item pool generation and reduction using Delphi expert panels were performed. The resulting version was psychometrically tested on 300 individuals aged 8–17 years. After item reduction based on factor analyses, differential item functioning, reliability, and validity were investigated. The final 35 items were associated with six scales (Cognition, Self, Daily Life and Autonomy, Social Relationships, Emotions, Physical Problems). Internal consistency and construct validity were satisfactory. Health-related Quality of life (HRQoL) was significantly lower in older and in female participants, as well as those with cognitive disabilities, anxiety, depression and post-concussion symptoms, than in comparative groups. The new QOLIBRI-KID/ADO is a comprehensive, multidimensional, reliable, and valid instrument, comparable in content and items to the QOLIBRI adult version. Therefore, disease-specific HRQoL can now be measured across the lifespan and may support the amelioration of treatment, care, rehabilitation, and daily life of children and adolescents after TBI. [ABSTRACT FROM AUTHOR]

Health-related quality of life (HRQOL) is an important indicator for recovery after pediatric TBI. To date, there are a few questionnaires available for assessing generic HRQOL in children and adolescents, but there are not yet any TBI-specific measures of HRQOL that are applicable to pediatric populations. The aim of the present study was to examine psychometric characteristics of the newly developed Quality of Life After Brain Injury Scale for Kids and Adolescents (QOLIBRI-KID/ADO) questionnaire capturing TBI-specific HRQOL in children and adolescents using an item response theory (IRT) framework. Children (8–12 years; n = 152) and adolescents (13–17 years; n = 148) participated in the study. The final version of the QOLIBRI-KID/ADO, comprising 35 items forming 6 scales, was investigated using the partial credit model (PCM). A scale-wise examination for unidimensionality, monotonicity, item infit and outfit, person homogeneity, and local independency was conducted. The questionnaire widely fulfilled the predefined assumptions, with a few restrictions. The newly developed QOLIBRI-KID/ADO instrument shows at least satisfactory psychometric properties according to the results of both classical test theoretical and IRT analyses. Further evidence of its applicability should be explored in the ongoing validation study by performing multidimensional IRT analyses. [ABSTRACT FROM AUTHOR]