Quality of Life after Brain Injury in Children and Adolescents (QOLIBRI-KID/ADO)—The First Disease-Specific Self-Report Questionnaire after Traumatic Brain Injury

Abstract

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.

A Short Scale to Measure Health-Related Quality of Life after Traumatic Brain Injury in Children and Adolescents (QOLIBRI-OS-KID/ADO): Psychometric Properties and German Reference Values

“…The instrument is equally applicable to children (8-12 years) and adolescents (13-17 years), allowing for aggregated analyses, item-level comparison, and longitudinal HRQoL monitoring. The psychometric properties of the QOLIBRI-OS-KID/ADO are similar to those of the QOLIBRI-KID/ADO [12], and the correlation between the total scores indicates strong construct overlap. The overlap with generic HRQoL as measured by the PedsQL was slightly lower.…”

Psychometric evaluation and reference values for the German Postconcussion Symptom Inventory (PCSI-SR8) in children aged 8–12 years

“…The QOLIBRI-KID/ADO ( 17 ) is a PROM assessing TBI-related HRQoL in children and adolescents. The final version of the questionnaire comprises 35 items with a five-point response format (from 1: “Not at all” to 5: “Very”) forming six scales (Cognition, Self, Daily Life & Autonomy, Social Relationships, Emotions, and Physical Problems).…”

“…Despite a relatively large pool of families contacted, the response rate was rather low, which might have had several reasons. This limitation has already been exhaustively discussed by von Steinbuechel et al (17). In addition, our sample consisted of children who had sustained TBI relatively long ago.…”

“…The self-report forms are the PCSI-SR5 (5-7 years; 5 items), the PCSI-SR8 (8-12 years; 17 items), and the PCSI-SR13 (13-18 years; 21 items). The 20-item proxy version (PCSI-P; suitable for ages [5][6][7][8][9][10][11][12][13][14][15][16][17][18] can be used when children and adolescents are unable to complete the questionnaires themselves, to obtain the opinions of caregivers, or to supplement self-reports (11). The items apply a Guttman scale, which differs according to the age version.…”

Unmet health care needs over the first 2 years after pediatric traumatic brain injury

“…We considered the PedsQL suitable for use in our study since it allowed the assessment of symptoms of children as young as two years old with parent reports; children's own opinions could be recorded starting at five years old. The disease-specific measure Quality of Life after Brain Injury in Children and Adolescents (QOLIBRI-KID/ADO) was unavailable at the start of the study 106 . This instrument may be used in future studies, as it can measure diseasespecific HRQoL across the lifespan.…”