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.

BackgroundHuntington’s disease (HD) is a rare neurodegenerative disorder with a prevalence of 6 per 100.000. Despite increasing research activity on HD, evidence on healthcare utilization, patients’ needs for healthcare services and Health-Related Quality of Life (HRQoL) is still sparse. The present study describes HRQoL in a Norwegian cohort of HD patients, and assesses associations between unmet healthcare and social support service needs and HRQoL.MethodsIn this cross-sectional population-based study, 84 patients with a clinical diagnosis of HD living in the South-East of Norway completed the HRQoL questionnaire EuroQol, EQ-5D-3L. Unmet needs for healthcare and social support services were assessed by the Needs and Provision Complexity Scale (NPCS). Furthermore, functional ability was determined using the Unified Huntington’s Disease Rating Scale (UHDRS) Functional assessment scales. Socio-demographics (age, gender, marital status, occupation, residence, housing situation) and clinical characteristics (disease duration, total functional capacity, comorbidity) were also recorded. Descriptive statistics were used to describe the patients’ HRQoL. Regression analyses were conducted in order to investigate the relationship between unmet healthcare needs and self-reported HRQoL.ResultsThe patients were divided across five disease stages as follows: Stage I: n = 12 (14%), Stage II: n = 22 (27%), Stage III: n = 19 (23%), Stage IV: n = 14 (16%), and Stage V: n = 17 (20%). Overall HRQoL was lowest in patients with advanced disease (Stages IV and V), while patients in the middle phase (Stage III) showed the most varied health profile for the five EQ-5D-3L dimensions. The regression model including level of unmet needs, clinical characteristics and demographics (age and education) accounted for 42% of variance in HRQoL. A higher level of unmet needs was associated with lower HRQoL (β value - 0.228; p = 0.018) whereas a better total functional capacity corresponded to higher HRQoL (β value 0.564; p < 0.001).ConclusionsThe study findings suggest that patients with HD do not receive healthcare services that could have a positive impact on their HRQoL.

This study aims to assess rehabilitation needs and provision of rehabilitation services for individuals with moderate-to-severe disability and investigate factors influencing the probability of receiving rehabilitation within six months after traumatic brain injury (TBI). Overall, the analyses included 1206 individuals enrolled in the CENTER-TBI study with severe-to-moderate disability. Impairments in five outcome domains (daily life activities, physical, cognition, speech/language, and psychological) and the use of respective rehabilitation services (occupational therapy, physiotherapy, cognitive and speech therapies, and psychological counselling) were recorded. Sociodemographic and injury-related factors were used to investigate the probability of receiving rehabilitation. Physiotherapy was the most frequently provided rehabilitation service, followed by speech and occupational therapy. Psychological counselling was the least frequently accessed service. The probability of receiving a rehabilitative intervention increased for individuals with greater brain injury severity (odds ratio (OR) 1.75, CI 95%: 1.27–2.42), physical (OR 1.92, CI 95%: 1.21–3.05) and cognitive problems (OR 4.00, CI 95%: 2.34–6.83) but decreased for individuals reporting psychological problems (OR 0.57, CI 95%: 1.21–3.05). The study results emphasize the need for more extensive prescription of rehabilitation services for individuals with disability. Moreover, targeted rehabilitation programs, which aim to improve outcomes, should specifically involve psychological services to meet the needs of individuals recovering from TBI.