Symposium 3
How to manage pediatric thoracic organ transplant recipient

[ISPHLT-SY3-2] The role of recipient transplant coordinator in pediatric heart transplantation in Japan

^○Yumiko Hori^1,2, Nobuaki Konishi^1,2, Ayaka Arizono^1,2, Heima Sakaguchi³, Norihide Fukushima² (1.Department of Nursing, National Cerebral and Cardiovascular Center, Japan, 2.Department of Transplantation, National Cerebral and Cardiovascular Center, Japan, 3.Department of Pediatric Cardiology, National Cerebral and Cardiovascular Center, Japan)

Since the revised Organ Transplant Act which allowed pediatric deceased organ was amended in 2010 EXCOR reimbursed in 2015, allowed small children to wait for much longer period for heart transplant (HTx) and HVAD and HeartMate3 reimbursed in 2019 made larger children wait longer and live at home. Prior to listing, the recipient transplant coordinators (RTCs) are responsible for (1) supporting the decision-making of the parents and the affected child, (2) building a patient support system, (3) understanding the child's daily living conditions before and after HTx, including medication, infection prevention and school life, and the child's adherence to medical treatment, (4) evaluating financial aspects, and (5) motivating patient and family education. During the waiting period, parents and the affected child will be educated on (1) what to expect after HTx and (2) how to make the educated content a habit of daily life. RTCs also support schooling in children with an implantable ventricular assist device (i-VAD) After HTx, support for school attendance and parents and child education will be continued so that the child can become independent and enjoy their school life. Although we provide visiting school service for the school-age children with EXCOR, it is difficult for some of them to express their thoughts to others or to accommodate their self to others and they often use hurtful words, because they cannot take school education together with other children. It is not so easy for i-VAD children to get used to their body image changes, hospitalization and long absence from the school attended previously by their transferring to Osaka. The RTCs are always working together with physicians, nurses, child life specialists, nursery staffs, and psychologists to address these issues on an individual basis. RTCs should have individualized measures for each affected child, as the waiting period is extremely prolonged due to pediatric organ donor shortage It is important for RTCs to make the child and parents ready to live during waiting and after HTx, and to support the children to lead a post-HTx self-sustaining social life according to their mental and physical growth.