The variety of consequences of traumatic brain injuries (TBI) constitutes a challenge in defining priorities of care planning. Our aim was to assess care utilization and unmet care needs in a homogeneous well-described sample of patients with long-term TBI.

The Paris-TBI inception cohort recruited adults with severe TBI (initial GCS<8) in 2005-2007 in the Parisian area. The 8-year evaluation included a section on care utilization, needs and barriers to care access, which was completed by 82 patients. A 27-item unmet care needs questionnaire and a 6-item questionnaire on barriers to care access were derived from literature and experts’ opinion.

Mean age was 43 years, mean Glasgow Outcome Score-Extended (GOSE) was 6 (moderate disability). Care utilization was important, with 20% having physiotherapy, 10% speech therapy, 2% occupational therapy, 6% psychotherapy. In the past year, 7% had been hospitalized; mean number of visits to general practitioners was 4.2. For everyday activities, 6% had professional help, 67% had help from a proxy. Most care needs were cited as unmet by 10 to 30% of the sample. Unmet needs for information on TBI to patients, to proxies, and for coordination of services were each cited by more than 50%. Unmet need for psychological help was cited by 46%. Mainly expressed barriers to care access were lack of information (52%), and waiting times (27%). Mean number of unmet needs per patient was 8 (min–max: 3–12). Number of unmet needs was not significantly related with age and gender. It was significantly associated with GOSE (rho=−0.5, P<0.0001), and with the Hospital Anxiety and Depression scores (rho=0.24, P=0.03 for anxiety; rho=0.28, P=0.01 for depression).

Such results can help address the needs of the brain injury population. A priority seems to be to improve the information offered to patients and proxies.