Disability and quality of life 20 years after traumatic brain injury

Objectives The study describes functional outcomes and health‐related quality of life (HRQL) in patients with traumatic brain injury (TBI) 20 years postinjury. Materials and Methods Forty‐four survivors who acquired moderate and severe TBI during 1995–1996 were followed 10 and 20 years postinjury. Outcomes were Glasgow Outcome Scale Extended (GOSE), Community Integration Questionnaire (CIQ), and SF‐36 questionnaire (SF‐36). Multiple regressions were performed to examine the relationship between follow‐up measurements, controlling for baseline demographics and injury severity. Results There were no significant differences in baseline age and civil status between moderate and severe TBI, but patients with severe injury had significantly lower employment rates (p = 0.05). Mean age at 20‐years follow‐up was 50.8 (SD 11.4) years, and 73% were males. Most patients showed good recovery (52%) or moderate disability (43%). Disability levels remained stable between and within severity groups from 10 to 20 years. Community integration including social integration improved from 10 to 20 years (p = 0.01 and p = 0.005, respectively). HRQL remained stable, except for subscales Bodily Pain and Role Emotional (p = 0.02 and p = 0.06). Depression at 10 years and females were associated with poorer mental health, while productive activity at 10 years indicated better physical and mental health at 20 years postinjury, respectively. Conclusions Functional limitations persist even decades after moderate and severe TBI, with poorer prognosis for females and persons who were depressed at the 10‐year follow‐up. Development and evaluation of targeted long‐term follow‐up programs and access to rehabilitation services for these groups should be highlighted. Improved community integration despite stable functional limitations draws attention to long‐term adaptation to adversity and illness. The study describes long‐term disability and health‐related quality of life (HRQL) in 44 patients with moderate and severe traumatic brain injury (TBI) injured in 1995–1996. Functional limitations persist even 20 years postinjury, with poorer prognosis for females and persons who were emotionally distressed at the 10‐year follow‐up. Development and evaluation of targeted rehabilitation programs for these groups should be highlighted.