10264-NQPC-10 ACTIVITY RECORD OF THE JAPAN BRAIN TUMOR ALLIANCE, AND THE NEEDS OF BRAIN TUMOR PATIENTS AND FAMILIES

Abstract

Abstract Brain tumor is a major shock at diagnosis for patients and their families, and is likely to have physical, emotional, financial, and social impacts to them. These impacts are not limited to during treatment, but affect their lives even after the treatment is over. Therefore, continuous support is a must for brain tumor patients and their families. The Japan Brain Tumor Alliance (JBTA) was established in 2006 and provides nationwide patient support. Our main activities are 1) support for patients and their families, 2) provision of the latest information and networking, 3) contribution to advocacy and science, and 4) awareness-raising activities. In (1), we hold monthly social gatherings where patients and their families can share their daily problems and challenges. In (2), JBTA actively collaborated with other patient groups in Japan and abroad, and in (4), continues to provide up-to-date information via website and social media. JBTA has been particularly active in 3) by holding the seminars by health care professionals and the meetings with neurosurgeons in Japan Clinical Oncology Group to discuss newly planned clinical trials. Our cooperation with rehabilitation therapists and nurses resulted in a brochure for patients, "Brain Tumor Support Book". As members of the committee of supportive care for brain tumor patients which was established in the Japan Society of Neuro-Oncology, collaboration with various health care professionals was made to prepare leaflets for supportive care including advance care planning. Since April 2023, a survey to find out the needs of patients and caregivers is on-going. The interim report as of June 2023 showed that patients and their caregivers have difficulties to share their concerns and problems, and that they have few opportunities to receive support from multidisciplinary professionals. Therefore, more supports for brain tumor patients and their families are needed in their daily lives.