Assessing and categorizing health-related quality of life outcomes in children and youth with acquired brain injury in outpatient rehabilitation.

The comparison with healthy peers is descriptive only. The healthy comparison data were available as published summary numbers, so no statistical test could be run and no P values or confidence intervals are reported. Healthy peer data existed only for self-report, so parents' views of their child's quality of life are missing from the comparison. Only 51 people were in the 18 to 25 group, so the finding that young adults fare worst is the least certain. Some centres rarely take patients over 18, so more disabled young adults may have gone to adult services and never been counted. Time since injury was not recorded consistently across centres, so the study cannot say whether how long ago the injury happened relates to quality of life. The questionnaire sat near the end of a long online battery and people could stop at any point; those who did were excluded, and the researchers could not check whether they differed from those who finished. Brain injury severity was unknown for some patients with traumatic brain injury because hospital Glasgow Coma Scale scores were not always available. For those with unknown severity, centres confirmed there had been no loss of consciousness and they were counted as mild. Slightly more participants were female (54.7%) than male, which may not match traumatic brain injury populations generally. The sample had already been referred for persistent problems needing multidisciplinary rehabilitation, so the share in the most severe band is not how common this is among all young people with acquired brain injury. Self-reported scores can be affected by mood, motivation, or how the person felt on the day of filling in the questionnaire. The four-band classification is a proposal. The authors say it still needs to be tested prospectively and followed over time before its clinical use is clear.

The authors declared no potential conflicts of interest with respect to the research, authorship or publication of the article. The work was funded by Hersenstichting, the Dutch Brain Foundation.

Do not read the proportions here as how common severely diminished quality of life is after acquired brain injury in childhood. These young people had already been referred because of persistent difficulties needing multidisciplinary rehabilitation, and the authors state plainly that these category proportions are not prevalence estimates for all young people with acquired brain injury.