Gesundheitsbezogene Lebensqualität von Kindern, Jugendlichen und Erwachsenen nach einem Schädel-Hirn-Trauma

by Ugne Krenz née Čepulytė
Cumulative thesis
Date of Examination:2023-11-16
Date of issue:2023-12-07
Advisor:Prof. Dr. Nicole von Steinbüchel-Rheinwall
Referee:Prof. Dr. Nicole von Steinbüchel-Rheinwall
Referee:Prof. Dr. York Hagmayer
Persistent Address: http://dx.doi.org/10.53846/goediss-10222

 

 

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Abstract

English

Traumatic brain injury (TBI) is considered as a major burden on public healthcare systems worldwide. The negative consequences of TBI might affect various aspects of people’s lives, leading to enormous negative effects on patients’ HRQoL. Previous studies have shown that TBI can lead to depression, anxiety symptoms, self-esteem problems and impairments in social relationships, physical activities and everyday-life in both, adults and children and adolescents. In recent years, the patient perspective has gradually been incorporated into the assessment of outcomes following a TBI. HRQoL can be measured with disease-specific or generic instruments. With disease-specific instruments, domains that are particularly relevant for a specific disease are assessed in a more differentiated way. With the QOLIBRI, a disease-specific instrument for adults after TBI already exists and it has been used internationally in research and clinical practice. However, many country-specific reference values from general populations are still missing. The first article of this doctoral thesis provided the reference values (N = 3298) stratified by age, gender and chronic health problems for the Italian general population. To date, there is no specific instrument for assessing HRQoL in children and adolescents after TBI. The aim of the QOLIBRI-KIDDY/KID/ADO project was to develop the first TBI- specific instrument for children and adolescents. The second article of this doctoral thesis dealt with the question of what is relevant for children and adolescents after TBI concerning their HRQoL. For this purpose, interviews in small groups were conducted with children and adolescents between 5 and 17 years of age, as well as with the parents of children after TBI. The results of this qualitative study showed that in some cases children and adolescents set different priorities compared to their parents. Next to this it was shown that children from the age of five were able to report on their own HRQoL. The information obtained from the interviews was used to generate items for the first pediatric TBI-specific HRQoL instrument. The reference tables obtained from the first article represent a benefit for both clinical practice and TBI research. The forthcoming validation studies on the QOLIBRI-KIDDY/KID/ADO in pediatrics will close the gap of a currently missing TBI-specific assessment of HRQoL and will provide the assessment of TBI-specific HRQoL over nearly the entire lifespan. The use of these measurement instruments can help to improve the evaluation, therapy, rehabilitation, and quality of life of patients after TBI.
Keywords: HRQoL; QOLIBRI; Traumatic Brain Injury; QOLIBRI Kiddy/Kid/Ado; reference values; pediatric TBI
 
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