Health-Related Quality of Life after Pediatric Traumatic Brain Injury: A Qualitative Comparison of Perspectives of Children and Adolescents after TBI and a Comparison Group without a History of TBI

Abstract

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.

Quality of Life after Brain Injury in Children aged six and seven years (QOLIBRI-KIDDY) – development and scale analysis of the first disease-specific self-report instrument for young children after traumatic brain injury

“…We would like to emphasize that disease-specific instruments are generally more sensitive than generic ones (Solans et al, 2008), for instance in capturing the specific impact of TBI. The effects of pediatric TBI encompass potential problems in self-awareness (Ponsford et al, 2014), autonomy and participation (Allonsius et al, 2021a;Lambregts, Smetsers, et al, 2018;Renaud et al, 2020) as well as in physical (Bronagh Quinn, S. John Sullivan, 2000;Evans et al, 2021;Slomine et al, 2006;Timmermann et al, 2022), emotional (Bradbury et al, 2021;Morse & Garner, 2018;Timmermann et al, 2022), cognitive (Timmermann et al, 2022;Watson et al, 2021), and social functioning (Yeates et al, 2004) domains. These consequences of pediatric TBI may severely reduce the HRQoL of affected individuals.…”