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 sequelae and the disability and dependence that follow an acquired brain injury (ABI) may result in a significant reduction in the quality of life (QoL) of those affected. The objective was to assess the QoL of a sample of Spanish patients with an ABI and analyze the influence of certain sociodemographic and injury-related variables on their QoL. The sample comprised 421 adults (60% male; M _age = 53.12; SD = 14.87). Professionals and relatives assessed the patients' QoL through the CAVIDACE scale, an ABI-specific tool based on the eight-domain QoL model. Univariate analyses showed statistically significant differences in the QoL scores in several sociodemographic (age, civil status, education level, prior employment status, type of home, level of supports, loss of legal capacity, recognized dependence, and degree of dependence) and injury-related (time since the injury, location of the injury, and presence of post-traumatic amnesia) variables. The multiple linear regression showed that loss of legal capacity, time since the injury, prior employment status, location of the injury, and degree of dependence were significant QoL predictors. These findings provide knowledge for the development of programs aimed at reducing the negative impact of ABI on QoL.

The implications of the individual quality of life (QoL) model of Schalock and Verdugo have made it the most cited QoL model in the field of disability. The QoL model is understood as a conceptual and applied framework for action that allows the materialization of the rights of persons with disabilities through the multidimensional assessment of these persons using QoL indicators, and the development of actions guided by these values and supported by evidence. The purpose of this work is to present the foundations of this model and offer a step-by-step guide to developing standardized QoL assessment instruments and providing evidence that supports their use to implement the model in practice. This paper explores relevant topics such as: (a) the need to identify critical population groups and contexts; (b) the identification of QoL indicators for said groups and contexts; (c) the development of items focused on the assessment of personal outcomes; (d) provision to the items of validity evidence based on content and pilot measure design and (e) validation process to gather evidence that supports the uses of the instrument. Last, a framework that allows using the evidence on personal outcomes as disaggregated and aggregated data at different levels of the social system is presented, thus highlighting the role of the model as a change agent regarding individuals, organizations and schools, and public policy.