Variability in quality of life 13 years after traumatic brain injury in childhood.

With the aim of describing variability in the long-term outcome of quality of life after neurosurgically treated pediatric traumatic brain injury, mostly self-reports of 21 individuals with mild or moderate/severe injury were gathered using Mayo-Portland Adaptability Inventory in telephone interviews 13 years aftyer injury. A majority of the participants reported brain injury-related problems. The median outcome on Mayo-Portland Adaptability Inventory was mild to moderate limitations. The variation within the moderate/severe group varied between relatively good outcome and moderate/severe limitations. Concentration, irritability, fatigue, and transportation were reported as the most problematic areas, whereas self-care was reported as well functioning. Societal participation appeared to be the best functional domain in this Swedish study. Examples of individual reports of the life-situation at various outcome levels were provided. Variability in outcome is large within severity groups, and research may gain by addressing both outcomes of the individuals and groups. Objective questions of outcome should be accompanied by questions of actual functioning in everyday life. To ensure long-term support for quality of life for those with remaining dysfunction after pediatric traumatic brain injury, healthcare systems should implement systematic routines for referral to rehabilitation and support.