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.

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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 Jeanette Falck Winther and Pernille Envold Bidstrup have contributed equally to this study.

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