Health-Related Quality of Life after Pediatric Traumatic Brain Injury: A Quantitative Comparison between Children’s and Parents’ Perspectives of the QOLIBRI-KID/ADO Questionnaire

Pediatric health-related quality of life (HRQoL) as a measure of subjective wellbeing and functioning has received increasing attention over the past decade. HRQoL in children and adolescents following pediatric traumatic brain injury (pTBI) has been poorly studied, and performing adequate measurements in this population is challenging. This study compares child/adolescent and parent reports of HRQoL following pTBI using the newly developed Quality of Life after Brain Injury in Children and Adolescents (QOLIBRI-KID/ADO) questionnaire. Three hundred dyads of 8–17-year-old children/adolescents and their parents were included in the study. The parent–child agreement, estimated using intraclass correlation coefficients and Cohen’s κ, displayed poor to moderate concordance. Approximately two-fifths of parents (39.3%) tended to report lower HRQoL for their children/adolescents on the total QOLIBRI-KID/ADO score. At the same time, about one-fifth (21.3%) reported higher HRQoL Total scores for their children/adolescents. The best agreement for parents rating adolescents (aged 13–17 years) was found in terms of the Total score and the Cognition and Self scale scores. To date, parent-reported HRQoL has been the preferred choice in pediatric research after TBI. However, with a parent–child disagreement of approximately 60%, our results highlight the importance of considering self-reports for children/adolescents capable of answering or completing the HRQoL measures

Quality of life after brain injury in children and adolescents questionnaire – validation of the proxy version (QOLIBRI-KID/ADO-Proxy)

Background The QOLIBRI-KID/ADO-Proxy is the first disease-specific health-related quality of life (HRQoL) proxy questionnaire developed for use in the field of pediatric traumatic brain injury (TBI), when children are unable to report their HRQoL themselves. Methods Its psychometric properties in a German-speaking context are examined in two samples (development and validation). Dyads of 600 parents and their children (aged 8–17 years) were included. Results The 35-item questionnaire covers six dimensions (Cognition, Self, Daily Life and Autonomy, Social Relationships, Emotions, and Physical Problems). Results showed good to excellent internal consistencies, acceptable test-retest reliability, and low to fair parent-child agreement. Confirmatory factor analyses supported the one-level six-factor structure. In terms of construct validity, there was an overlap between the disease-specific and the generic HRQoL. Lower parent-reported HRQoL in children was associated with lower parental education, lower functional recovery (Study I), more recent TBI, and more severe depressive, anxiety, and post-concussion symptoms. Findings differed between the two studies in terms of age, gender, and TBI severity. Study I found more severe TBI linked to lower HRQoL in adolescents, while Study II indicated lower HRQoL ratings in girls. Conclusion The QOLIBRI-KID/ADO-Proxy is recommended when individuals are unable to self-report their HRQoL

NEXT21- an experiment

With the aim of creating a green, social, energy-efficient and adaptive urban living environment fit for the challenges of the 21st century and its demands, Osaka Gas commissioned the experimental residential complex `NEXT21` in Osaka in 1989, built in 1993. 15 years into its existence and three consecutive five-year cycles of ongoing inhabitation experimentation, the 30 minute documentary `NEXT21 - an experiment` looks back on the context and conditions of that visionary and pioneering multi-disciplinary design process. Due to the mounting collective concern for the threat of climate change, ecology and sustainable building have once again regained public attention since the oil crisis of the late 70’s. The challenge for designers today is to use this momentum and to transform it into a widely supported and effective sustainable development of the built environment. The precondition is to not only to start working on it with enthusiasm, but also to look back to extract valuable lessons from the richness of our recent past; results of realized pioneering projects and still ongoing experiments. The NEXT21 project in Osaka is one of the rare Open Bulding projects that did manage to capture the imagination and still up to today remains a fascinating building. Its complex design process was determined by the succesful cooperation of a group of professionals from different disciplines. An interesting question we asked was: what does this project have that the others don’t? What is it’s X-factor? Can understanding the mechanisms at work help us create better buildings and so widen the support for sustainability? To gain insight in the X-factor and it’s creation is what motivated the making of this documentary and it is our opinion crucial for the successful proliferation of ecological and sustainable building