Abstract

ObjectivesThe study describes functional outcomes and health‐related quality of life (HRQL) in patients with traumatic brain injury (TBI) 20 years postinjury.Materials and MethodsForty‐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.ResultsThere 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.ConclusionsFunctional 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.

Highlights

  • The findings suggest that patients with moderate and severe traumatic brain injury (TBI) experience persisting functional limitations and decreased employment rates (Andelic et al, 2009; Forslund et al, 2017; Ponsford et al, 2008), reduced physical and mental health and elevated probabilities of social isolation (Andelic et al, 2009; Hawthorne, Gruen, & Kaye, 2009)

  • There were no significant differences in the mean scores of social function (SF)-­36 subscales between 10 and 20 years, except for Bodily Pain, with higher scores at 20 years indicating less pain (67.4 vs. 80.4 p = 0.02, respectively)

  • This study described disability levels and health-­related quality of life (HRQL) 20 years after moderate and severe TBI, changes in global functioning, community integration and HRQL from 10 to 20 years, and factors associated with physical and mental health

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Summary

Introduction

A large proportion of patients with moderate and severe traumatic brain injury (TBI) sustain long-­term physical, cognitive, and emotional impairments that have a deep impact on their functioning, reintegration to society and health-­related quality of life (HRQL; Andelic et al, 2009; Forslund, Roe, Sigurdardottir, & Andelic, 2013; Hammond et al, 2004; Jacobsson, Westerberg, Soderberg, & Lexell, 2009; Ponsford, Draper, & Schonberger, 2008; Schulz-­ Heik et al, 2016; Sigurdardottir, Andelic, Roe, & Schanke, 2009; Wilson et al, 2017). Nestvold & Stavem assessed determinants of HRQoL in a TBI cohort 22 years after injury, and found no association between HRQoL and injury data (Nestvold & Stavem, 2009)

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