Employment, occupation, and income in adults with neurofibromatosis 1 in Denmark: a population- and register-based cohort study.

BACKGROUND: Little is known about employment status, occupation, and disposable income in adults with NF1. METHODS: From the Danish National Patient Registry and database of two national Centers for Rare Diseases, we identified 1469 adults with NF1, who were matched to 11,991 randomly selected population comparisons on sex and birth year and month. Annual information on employment, occupation and disposable income was ascertained from national registries in 1980-2019. RESULTS: Adults with NF1 had a lower odds ratio (OR) for employment [OR 0.71, 95% confidence interval (CI) 0.61-0.83] and higher OR for health-related unemployment (OR 2.94, 95% CI 2.16-3.96) at age 30 years than population comparisons, which persisted at age 40 and 50 years. Somatic diagnoses were associated with a higher OR for health-related unemployment in adults with NF1 than in the population comparisons. Adults with NF1 had a slightly lower disposable income, with a 14% (0.82-0.89) reduction observed among the youngest birth cohort. Furthermore, adults with NF1 were less likely to be in a high skilled occupation at ages 30, 40 and 50 years. CONCLUSION: Adults with NF1 have a lower employment rate, which was mainly due to health-related reasons and a slightly lower disposable income than adults without NF1. Thus, anticipation guidance for employment should be part of the management of NF1 families.

Endocrine morbidity in neurofibromatosis 1: a nationwide, register-based cohort study.

OBJECTIVE: Previous studies have found that neurofibromatosis 1 (NF1) is associated with an increased risk for endocrine disorders, but no comprehensive overview of the risk for specific endocrine disorders has been published. We assessed endocrine morbidity in individuals with NF1 from information on hospital admissions, surgery for endocrine disorders, and relevant medication. DESIGN: A nationwide population registry-based cohort study. METHODS: We identified 2467 individuals with NF1 diagnosed between 1977 and 2013 from the Danish National Patient Register and the RAREDIS database and 20 132 randomly sampled age- and sex-matched population comparisons. Information on endocrine diseases was identified using registrations of discharge diagnoses, surgery, and medication prescriptions. The rates of endocrine disorders in individuals with NF1 were compared with those in the comparison cohort in Cox proportional hazard models. RESULTS: Individuals with NF1 had a higher rate than the comparison group of any endocrine discharge diagnosis (hazard ratio [HR] 1.72, 95% confidence interval [CI]: 1.58-1.87), endocrine-related surgery (2.03, 1.39-2.96), and prescribed medications (1.32, 1.23-1.42). Increased HRs were observed for diseases and surgical operations of several glands, including pheochromocytoma, and for osteoporosis, and osteoporotic fractures. Decreased rates were observed with drugs for type 2 diabetes. Women with NF1 had higher HRs for surgery of the ovaries, uterus, and sterilization, but lower rates of surgeries of cervix and prescriptions for birth control pills. CONCLUSIONS: Neurofibromatosis 1 is associated with a variety of endocrine disorders, surgery, and medication related to endocrine disease. Awareness of endocrine morbidity is important in the clinical follow-up of individuals with NF1.

Cohort profile: life with neurofibromatosis 1 - the Danish NF1 cohort.

PURPOSE: The Danish neurofibromatosis 1 (NF1) cohort was initiated to study health-related, socioeconomic and psychological consequences of living with the monogenetic disorder NF1 using a nationwide and population-based approach. PARTICIPANTS: The cohort includes all 2467 individuals in Denmark who were hospitalised with or due to NF1 from 1977 to 2013 or registered in the RAREDIS Database (1995-2013), a national clinical database for rare diseases, or both. A comparison cohort matched to individuals with NF1 on sex and date of birth was identified in the Civil Registration System (n=20 132). FINDINGS TO DATE: All cohort members were linked to the unique Danish registries to obtain information on hospital contacts, birth outcomes, education and partnership. A questionnaire was completed by 244 of the 629 adult cohort members with NF1 registered in the RAREDIS Database to evaluate the psychosocial and emotional burden. Further, neuropsychological tests were performed on 103 adult cohort members with NF1 and 38 adult population comparisons. To date, six studies have been published. Individuals with NF1 had an increased risk for (1) hospitalisation for disorders affecting all organ systems of the body throughout all decades of life, (2) psychiatric disorders, (3) attaining a short or medium long education and (4) not forming a life partner. Women with NF1 had an increased risk for spontaneous abortions and stillbirths. Finally, adults with NF1 had an impaired quality of life and a high need for professional support for physical, psychological and work-related problems, which was partly associated with disease severity and visibility. FUTURE PLANS: The cohort will regularly be updated with newly diagnosed patients in the RAREDIS Database as well as with outcome information in the Danish registries. New studies are in progress to assess other medical and socioeconomic dimensions of living with NF1.

School performance of children with neurofibromatosis 1: a nationwide population-based study.

Children with neurofibromatosis 1 (NF1) may have a high burden of somatic disease and cognitive impairments, which can lead to poor academic performance. We evaluated school grades from exams ending mandatory schooling (usually around age 15 or 16 years) of children with NF1 in a population-based registry study using a within-school matched design. The study included 285 children with NF1 and 12,000 NF1-free peers who graduated from the same school and year during 2002-2015. We estimated overall and gender-specific grades by subject and compared the grades of children with NF1 with those of NF1-free peers in linear regression models. We also examined the effect of social and socioeconomic factors (immigration status and parental education, income and civil status) on grades and age at finalizing ninth grade. School grades varied considerably by socioeconomic stratum for all children; however, children with NF1 had lower grades by an average of 11-12% points in all subjects. In the adjusted models, children with NF1 had significantly lower grades than their NF1-free peers, with largest negative differences in grades observed for girls with NF1. Finally, children with NF1 were 0.2 (CI 0.1-0.2) years older than their peers on graduating from ninth grade, but only maternal educational modified the age at graduating. In conclusion, students with NF1 perform more poorly than their peers in all major school subjects. Gender had a strong effect on the association between NF1 and school grades; however, socioeconomic factors had a similar effect on grades for children with NF1 and their peers.

Pregnancy outcomes in women with neurofibromatosis 1: a Danish population-based cohort study.

BACKGROUND: The probability of a pregnancy, live birth, stillbirth and abortion has never been assessed in women with neurofibromatosis 1 (NF1) in a large population-based study. METHODS: We included 1006 women (15-49 years) registered with NF1 in the Danish National Patient Registry or followed in two national Centers for Rare Diseases and 10 020 women from the Danish population. Information on pregnancy outcomes was ascertained from health registries. Cumulative incidence, mean cumulative count, hazard ratios (HRs) and proportion ratios (PRs) with 95% CIs were calculated. RESULTS: The cumulative incidence of a first pregnancy at age 50 years was slightly lower in women with NF1 (74%; 95% CI 70 to 77) than in population comparisons (78%; 95% CI 77 to 79). When all pregnancies were included, two pregnancies were expected per woman at age of 50 years, irrespective of a NF1 diagnosis. The hazard of a pregnancy did not differ between women with NF1 (HR 1.03; 95% CI 0.95 to 1.11) and the comparisons after adjustment for somatic and psychiatric disease. The proportion of pregnancies that resulted in a live birth was 63% (783/1252) among women NF1 and 68% (8432/12 465) among the comparisons, yielding a PR of 0.95 (95% CI 0.90 to 1.00). The proportions of stillbirths (PR 2.83; 95% CI 1.63 to 4.93) and spontaneous abortions (PR 1.40; 95% CI 1.09 to 1.79) were increased in women with NF1. CONCLUSIONS: A similar hazard for pregnancy was observed for women with NF1 and population comparisons after adjustment for potential medical consequences of NF1. However, women with NF1 experienced more spontaneous abortions and stillbirths.

Psychiatric disorders in individuals with neurofibromatosis 1 in Denmark: A nationwide register-based cohort study.

The aim of this study was to assess the risks of psychiatric disorders in a large cohort of 905 individuals with NF1 and 7614 population comparisons matched on sex and year of birth. The cohort was linked to the Danish Psychiatric Central Research Register to ascertain information on hospital contacts for psychiatric disorders based on the International Classification of Diseases version 8 and 10. The hazard ratio (HR) for a first psychiatric hospital contact was higher in girls (4.19, 95% confidence interval [CI] 1.81-9.69) and boys with NF1 (5.02, 95% CI 3.27-7.69) <7 years of age than in the population comparisons. Both sexes had increased HRs for developmental disorders, including attention deficit/hyperactivity disorders, autism spectrum disorders, and intellectual disabilities in childhood. Females with NF1 had also increased HRs for unipolar depression, other emotional and behavioral disorders, and severe stress reaction and adjustment disorders in early adulthood. The HRs for psychoses, schizophrenia, bipolar disorders, and substance abuse were similar in individuals with NF1 and the population comparisons. Finally, the cumulative incidence of a first hospital contact due to any psychiatric disorder by age 30 years was 35% (95% CI 29-41) in females and 28% (95% CI 19-37) in males with NF1. Thus, screening for psychiatric disorders may be important for early diagnosis and facilitation of appropriate and effective treatment in individuals with NF1.

Clinical characteristics and quality of life, depression, and anxiety in adults with neurofibromatosis type 1: A nationwide study.

Neurofibromatosis type 1 (NF1) is a genetic condition characterized by numerous somatic manifestations. The psychosocial burden in adults has rarely been studied. We examined the prevalence of self-reported impairment of quality of life (QoL), symptoms of anxiety and depression and need for support, associated with disease severity and visibility. We conducted a nationwide cross-sectional study of all 467 adults with NF1 diagnosed between 1977 and 2016 at one of the two national centers for rare diseases in Denmark. A total of 244 (56% response rate) completed a questionnaire that included standard measures of QoL, symptoms of depression and anxiety, indicators of disease-related severity, visibility, and need for professional support. Associations between disease severity and visibility and psychosocial burden were analyzed in descriptive and multivariate models. We observed impaired QoL (mean = 81.3; 95% CI, 76.2; 86.4); 19% reported symptoms of depression (mean = 5.7; SD = 5.4), and 15% reported anxiety (mean = 5.1; SD = 5.2) at a clinical level. Adults with NF1 also reported requiring professional support for physical, psychological, and work-related problems. Disease severity and (partly) visibility were significantly (p < .0001) associated with psychosocial well-being and a requirement for support. This study provides new understanding of the factors associated with impaired QoL, indicating that follow-up care should be optimized into adult life.

Forming and ending marital or cohabiting relationships in a Danish population-based cohort of individuals with neurofibromatosis 1.

Individuals with neurofibromatosis 1 (NF1) may have problems in managing the transition between childhood and adulthood, such as forming a relationship or finding a partner. We aimed to determine the association between NF1 and forming and ending marital or cohabiting relationships by comparing a large Danish population of adults with NF1 with population comparisons. In this population-based cohort study, we compared a population of Danish adults who were hospitalized for or with complications to prior diagnosed NF1 (n = 787) with population comparisons matched on gender and birth year (n = 7787) through nationwide registries with annually updated information on marriage and cohabitation. Discrete-time survival models were used to estimate hazard ratios (HRs) and 95% confidence intervals (CIs) for the formation and termination of relationships, with adjustment for birth year, gender, and somatic and psychiatric comorbidities at entry. Individuals with NF1 were significantly less likely to form a relationship (HR = 0.65; 95% CI: 0.58-0.73), with the lowest association for individuals ≥33 years (HR 0.40; 95% CI: 0.25-0.63) and the highest for those aged 18-20 years (HR 0.82; 95% CI: 0.70-0.96). No significant difference was found for ending relationships (HR 1.00; 95% CI: 0.86-1.16). In conclusion, individuals who were hospitalized for NF1 are less likely to engage in marital or cohabiting relationships than population comparisons and are older when they form their first relationship. Once a relationship has been established, however, couples with a NF1-individual are not at greater risk of ending the relationship.

Multisystem burden of neurofibromatosis 1 in Denmark: registry- and population-based rates of hospitalizations over the life span.

PURPOSE: The aim was to assess lifetime risk for hospitalization in individuals with neurofibromatosis 1 (NF1). METHODS: The 2467 individuals discharged with a diagnosis indicating NF1 or followed in a clinical center for NF1 were matched to 20,132 general population comparisons. Based on diagnoses in 12 main diagnostic groups and 146 subcategories, we calculated rate ratios (RRs), absolute excess risks (AERs), and hazard ratios for hospitalizations. RESULTS: The RR for any first hospitalization among individuals with NF1 was 2.3 (95% confidence interval 2.2-2.5). A high AER was seen for all 12 main diagnostic groups, dominated by disorders of the nervous system (14.5% of all AERs), benign (13.6%) and malignant neoplasms (13.4%), and disorders of the digestive (10.5%) and respiratory systems (10.3%). Neoplasms, nerve and peripheral ganglia disease, pneumonia, epilepsy, bone and joint disorders, and intestinal infections were major contributors to the excess disease burden caused by NF1. Individuals with NF1 had more hospitalizations and spent more days in hospital than the comparisons. The increased risk for any hospitalization was observed for both children and adults, with or without an associated cancer. CONCLUSION: NF1 causes an overall greater likelihood of hospitalization, with frequent and longer hospitalizations involving all organ systems throughout life.

Correction: Educational delay and attainment in persons with neurofibromatosis 1 in Denmark.

Since the publication of the article, the authors noticed that 'NFI cohort' and 'NFI-free cohort' columns in the 'Autismg' and the 'Autism/ADHD' rows had been erroneously interchanged in Table 3. This has now been updated in the HTML and PDF of the original article.

Educational delay and attainment in persons with neurofibromatosis 1 in Denmark.

Most research on psychosocial consequences of neurofibromatosis type 1 (NF1) has focused on the relationship between disease factors and cognitive functioning. NF1 may impair domains of learning and attention, resulting in low academic performance. This study is the first nationwide population-based cohort study to investigate educational attainment and delay in completing mandatory school by persons with NF1. Educational information was collected from 550 persons at the age of 30 (born 1965-1984). They were diagnosed with NF1 in Denmark and compared to a cohort of NF1-free persons matched on gender and age (n = 4295). Multinomial logistic models were applied to estimate odds ratios (ORs) for obtaining short (≤9 years) or medium (10-12 years) education compared to long education (>12 years) by the age of 30 years. We calculated the probability of graduating 9th year of mandatory school at different ages in 932 persons with NF1 and 7962 NF1-free persons (born 1965-2000) using quantile regression. The OR of educational completion for short- and medium-term education was three fold (95% CI 2.55-3.99) and 1.29 fold (95% CI 0.99-1.69) higher, respectively, for persons with NF1 than NF1-free persons after adjusting for birth year, gender, psychiatric and somatic morbidity and mother's education. Persons with NF1 were significantly delayed in graduating mandatory school education compared to NF1-free persons. When 90% of persons have graduated, persons with NF1 were 1.2 times older than the NF1-free persons. Experiencing delays in mandatory school likely affect further educational achievements and may impair employment and entering work force.

Prevalence and severity of fatigue in adolescents and young adults with acquired brain injury: A nationwide study.

Objective: To investigate the prevalence and severity of fatigue in adolescents and young adults with acquired brain injury (ABI) compared with healthy controls (HCs) and to examine associations between fatigue and gender, age and level of education. Methods: This cross-sectional study included 15-30 year old patients with ABI and a convenience sample of 15-30 year old HCs. All participants completed the 20-item Multidimensional Fatigue Inventory (MFI-20). Pathological fatigue was defined as "General Fatigue" ≥12. Adjusted mean differences between groups were calculated using multivariate analysis of covariance (MANCOVA). The adjusted prevalence proportion ratio (PPRadj) of pathological fatigue was calculated using Poisson regression. Results: The patients (n = 334) had higher scores than the HCs (n = 168) on all MFI-20 subscales with adjusted mean differences ranging from 1.7 to 4.7 and a higher prevalence of pathological fatigue (73% versus 29%), PPRadj 2.7 (95% confidence interval 2.1-3.5). Female patients experienced more fatigue than males on the "General Fatigue" and "Reduced Activity" subscales, while no gender differences were found in the HC group. Patients and HCs with elementary education had elevated scores on the "Reduced Activity" and "Mental Fatigue" subscales. Age was not associated with any of the subscale scores. Conclusion: Young patients with ABI had markedly higher prevalence and severity of fatigue than HCs. Age (15-30 years) was not associated with fatigue. No clear patterns of associations were evident with gender and level of education. Abbreviations: ABI: acquired brain injury; CI: confidence interval; GF: general fatigue; GOSE: Glasgow Outcome Scale Extended; HC: healthy control; MANCOVA: multivariate analysis of covariance; MF: mental fatigue; MFI-20: Multidimensional Fatigue Inventory-20; PF: physical fatigue; RA: reduced activity; RM: reduced motivation; TBI: traumatic brain injury.

The Initiation of Rehabilitation Therapies and Observed Outcomes in Pediatric Traumatic Brain Injury.

PURPOSE: Pediatric traumatic brain injury (TBI) is associated with immense physical, emotional, social, and economic burden. This study examined timing and frequency of rehabilitation services provided by the inpatient interdisciplinary team in children admitted for a TBI. Understanding the timing and frequency of rehabilitation services could guide TBI recovery. DESIGN AND METHODS: This is a 3-year prospective observational study of previously healthy children (n = 35) admitted for a TBI to an urban Level 1 trauma hospital. Children with mild, moderate, and severe TBI were included. Initiation and frequency of the interdisciplinary rehabilitation team's care and neurocognitive-functional outcomes were analyzed. Outcome measures included the Glasgow Outcome Scale-Extended Pediatrics and the Speech Pathology Neurocognitive-Functional Evaluation at hospital discharge and first follow-up visit. RESULTS: The initiation and the frequency of rehabilitation services were found in all severities of TBI. Timing and frequency of services also aligned with varied severities. Children with moderate TBI showed the most improvement in Glasgow Outcome Scale-Extended Pediatrics and the Speech Pathology Neurocognitive-Functional Evaluation on their first follow-up visit, whereas children with mild and severe TBI demonstrated little change in outcome at their first follow-up visit and had varied services based on their hospital course. CONCLUSION: Services by interdisciplinary rehabilitation teams were provided across all brain injury severity groups, despite the lack of comprehensive rehabilitation guidelines. Varied neurocognitive and functional outcome changes measured found children with moderate TBI had the greatest change in outcomes. Further research is warranted to assess the timing and frequency of services and their relationship to neurocognitive-functional outcomes.

Psychological outcome after severe traumatic brain injury in adolescents and young adults: The chronic phase.

OBJECTIVES: Young individuals surviving severe traumatic brain injury (TBI) frequently experience a wide range of cognitive, emotional and behavioural consequences. This cross-sectional follow-up study investigated psychological outcome of young survivors in the chronic phase, and whether psychological outcome was associated with improvement of functional abilities during sub-acute admission. METHODS: Patients, who acquired a severe TBI during adolescence or early adulthood (n = 36) and received early intensive rehabilitation, were contacted for follow-up assessment concerning psychological outcome and completed the Adult Self Report 18-59 (ASR18-59). Demographic data, functional outcomes and severity measures were obtained from the local database. RESULTS: The participants had a mean age of 24.1 years (SD = 4.1) at follow-up, and the mean time since injury was 72.1 months (SD = 44.2). Results showed significantly higher scores compared with the normative reference population in relation to the subscales withdrawal/isolation (p = 0.013), attention problems (p = 0.008) and intrusive behaviour (p = 0.046). Pearson correlation analyses showed that young survivors experiencing more functional improvement during inpatient rehabilitation had fewer psychological problems during the chronic phase in the subscales: withdrawal/isolation, rule breaking, intrusive behaviour and total problems. CONCLUSION: Young patients reported psychological problems in several areas during the chronic phase of injury, which may hinder complete reintegration and participation in society. Larger functional improvement during sub-acute rehabilitation seemed to be associated with less psychological problems in the chronic phase.

Pediatric Traumatic Brain Injury: Families and Healthcare Team Interaction Trajectories During Acute Hospitalization.

PURPOSE: To identify common or unique family-healthcare team interactions during acute hospitalization for pediatric patients with a traumatic brain injury (TBI) using a life course trajectory (LCT) theoretical approach. DESIGN AND METHODS: A 3-year prospective observational study of 35 children, ages 5 days to 15 years who were admitted to an urban Level-1 trauma hospital for a TBI. We defined brain injury severity using the admission Glasgow Coma Scale score (mild 13-15, moderate 9-12, and severe 3-8). Using a life course trajectory theoretical approach, we extracted from the patient's electronic health record the first eight-days of hospitalization and plotted the number and type of daily family-healthcare team interactions to visualize patterns or phases. RESULTS: A general trajectory for each severity group was determined. When individually compared, family trajectories were similar based on injury severity. Visual interpretations of family-healthcare interactions based on the brain injury severity yielded three phases. The interactions phases included: (1) information seeking, (2) watchful waiting and (3) decision making. CONCLUSION: Using a LCT approach, phases identified based on injury severity and family interactions support the need for proper timing of tailored communication and support. The findings also support the development of future best care practices that facilitate family's needs, decrease caregiver burden to improve functional outcomes.

Using personality traits to construct linear growth models of mental health in family members of individuals with severe brain injury.

OBJECTIVE: No studies have examined the impact of personality traits on mental health among caregivers of individuals with severe brain injury. Therefore, the purpose of the current study was to construct linear growth models to examine whether the personality traits of family members of individuals with severe brain injury could predict the trajectories of their own mental health-related quality of life (HRQoL), anxiety, and depression beginning in a neurointensive care unit through 1 year after injury. METHOD: Danish family members of individuals with severe brain injury (n = 52) completed the Short Form-36 assessing mental HRQoL (vitality, social functioning, role limitations-emotional, mental health), anxiety, and depression across 5 time points during the 1st year after injury. The measure of personality was administered 3 months after the patients' discharge. RESULTS: All mental HRQoL, anxiety, and depression variables improved significantly over time. Caregivers who were less neurotic and less conscientious had higher vitality, social functioning, and mental health over time, whereas caregivers who were more agreeable had higher social functioning over time. Caregivers with lower neuroticism had lower anxiety and depression over time, as well as a more accelerated decrease in anxiety and depression. CONCLUSIONS: Caregivers' personality traits were strongly associated over time with mental HRQoL, anxiety, and depression, with neuroticism being especially important for trajectories of anxiety and depression. These results suggest that personality assessments for caregivers of individuals with severe brain injury could help identify those most at risk for poor mental health over the course of rehabilitation. (PsycINFO Database Record

Caregiver burden in Danish family members of patients with severe brain injury: The chronic phase.

OBJECTIVE: To investigate caregiver burden and factors associated with caregiver burden among family members of patients with severe brain injury in the chronic phase. Additionally, the study aimed at investigating differences in burden between parents and spouses. METHODS: Forty-four Danish caregivers of patients with severe brain injury were contacted 3-6 years post-injury and asked to complete a measure of caregiver burden. RESULTS: Medium, high and low levels of burden were observed in 45%, 16% and 39% of family members, respectively. Higher burden was seen in caregivers of patients with more severe injuries, who spent more time on caregiving and reported more unmet needs. Overall, spouses spent significantly more time taking care of their family member than parents and reported higher levels of burden. CONCLUSIONS: The findings emphasized the continuing consequences of brain injury on not only the individual with the brain injury, but also on the surrounding family. Spouses, caregivers of patients with more severe injuries, who spent more time on caregiving and reported more unmet needs experienced higher levels of burden in the chronic phase. Future intervention programmes should target such specific caregivers, who might need more support and long-lasting help.

Psychological Outcome in Young Survivors of Severe TBI: A Cross-Informant Comparison.

OBJECTIVE: To investigate the psychological outcome and the agreement between self-ratings and proxy-ratings in young individuals after severe traumatic brain injury (TBI). METHODS: Twenty pairs of former patients who sustained a severe TBI in their adolescence or early adulthood and their significant others (SOs) were contacted around 66 months after injury to complete a measure of psychological and behavioral problems. The Adult Self-Report 18-59 and the Adult Behavior Checklist 18-59 were used. RESULTS: Results showed significant differences compared to the normative sample in the domains withdrawal, attention, and intrusive and internalizing problems. Good or excellent levels of agreement were found between the self-rating and the proxy-rating in overt areas such as somatic complaints and aggressive and intrusive behavior. Fair or poor levels of agreement were found in nonovert areas such as anxiety and depression, withdrawal, thought and attention problems, and personal strength. CONCLUSION: The findings show that young patients experience psychological dysfunction. Our study suggests that the use of either a self-rating or a proxy-rating would be appropriate for evaluating overt domains, regarding the good to excellent levels of agreement. However, in nonovert domains, such as withdrawal and attention, an additional proxy-rating from a SO could provide supplementary information and build a more complete objective assessment.

Family needs in the chronic phase after severe brain injury in Denmark.

OBJECTIVE: This preliminary study aimed at investigating (1) changes in the status of family members between time of injury and follow-up in the chronic phase and (2) the most important needs within the family in the chronic phase and whether the needs were perceived as met. PARTICIPANTS: The sample comprised 42 relatives (76% female, mean age = 53 years) of patients with severe brain injury, who had received intensive sub-acute rehabilitation. The relatives were contacted in the chronic phase after brain injury. OUTCOME MEASURE: A set of questions about demographics and time spent caregiving for the patient was completed. The relatives completed the revised version of the Family Needs Questionnaire, a questionnaire consisting of 37 items related to different needs following brain injury. RESULTS: Significant changes in status were found in employment (z = -3.464, p = 0.001) and co-habitation (z = -3.317, p = 0.001). The sub-scale 'Health Information' (Mean = 3.50, SD = 0.73) had the highest mean importance rating, whereas the sub-scale 'Emotional support' (Mean = 3.07, SD = 0.79) had the lowest. When combining importance and met ratings, it was found that the five most important needs were only met in 41-50% of the total sample. CONCLUSION: Occupational and co-habitation status of the relatives was significantly affected by brain injury. A high number of relatives reported family needs not satisfied in the chronic phase. This requires an interventional approach for families to get these needs fulfilled individually, even after rehabilitation.