Survey on diagnosis of post-brain injury "higher brain dysfunction" in patients with cognitive impairment. Family/caregiver response.

In Japan, the diagnostic criteria for the higher brain dysfunction (HBD) emerged in 2005 in response to social needs for support for the patients and their families. The issue of cognitive dysfunction after brain trauma is not unique to Japan. The purpose of this study was to reveal the current status of family members of HBD patients from their perspective, focusing on the changes before and after the establishment of diagnostic criteria in Japan. We conducted a questionnaire survey for family members supporting the HBD patients. The questionnaire included the causative condition, explanation on HBD by health professionals, and problems/difficulties they encountered. This research involved family members of 278 HBD cases (males = 211, age 49 years). The major underlying cause was head injury (n = 139). Compared to patients diagnosed pre-2005, a significantly larger proportion of family members after 2005 received information on the condition during the acute phase (within one month) (p < 0.001), including that from physicians (p < 0.001). Nearly half of the families cited a lack of awareness of HBD among the professionals as a problem. In Japan, awareness of HBD in the society is gradually increasing especially after the current diagnostic criteria were implemented, and there has been a steady increase over time in early diagnosis. Yet, there still remain those not appropriately diagnosed. To salvage those patients and the families left behind, we are suggesting several recommendations to further augment clinical practice and the healthcare systems in Japan.