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

Abstract

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.

Keywords:

• Certification
• cognitive dysfunction
• higher nervous activity
• neurobehavioral manifestations
• social support

Acknowledgments

We thank F.G. Issa, MD, PhD (Word-Medex Pty Ltd) and Yumi Suzuki for the careful reading and editing of the manuscript, and Prof. Masako Nishikawa (Clinical Research Support Center, The Jikei University School of Medicine) for statistical guidance.

Ethical approval

The study protocol was approved by the Ethics Review Committee of Jikei University School of Medicine for Biomedical Research [#32-356(10443)].

Consent to participate

A signed informed consent form was obtained from each subject before participating in this study.

Consent for publication

A signed informed consent form was obtained from each subject before participating in this study.

Authors contributions

Each author contributed to the study concept and design. Material was prepared by TT and SW. Data was collected by SW and analyzed by TT, NY, and SW. SW and MA supervised the study. The first draft of the manuscript was written by TT, and all authors commented on the initial versions of the manuscript. All authors read and approved the final manuscript.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The participants of this study did not provide written consent for their data to be shared publicly. Accordingly, supporting data is not available due to the sensitive nature of the research.

Additional information

Funding

This work was supported by a Health Labor Sciences Research under Grant [number 20GC1018]; and JSPS KAKENHI under Grant [number JP19K20018].