日本小児循環器学会雑誌 Pediatric Cardiology and Cardiac Surgery

Some pediatric patients with heart disease are faced with high medical expenses in their adulthood. Most social support systems in place for management of pediatric cases terminate at 20 years of age in Japan. We describe an adult patient faced with this situation who needed our guidance for social support and another case with a successful transition. Case 1 underwent Fontan surgery abroad. He had been stable and returned to Japan when he was 19 years old. The attending physician in Japan started pulmonary vasodilators, and medical costs dramatically increased. Due to delayed entry into the adult social support system, he had difficulties in paying the high medical expenses; however, the High-Cost Medical Expense Benefit system helped reduce the expenses.

Medical expenses in Case 2 (pulmonary arterial hypertension) were high owing to pulmonary vasodilators and home oxygen therapy. The designated intractable/rare diseases system greatly reduced out-of-pocket expenses of this patient. Social support systems for adults are complex and difficult to understand; additionally, they frequently change. Therefore, medical personnel involved in transition of pediatric patients with heart disease need to understand these systems and assist patients and their families to avoid hardship by providing appropriate information and guidance regarding adult social support systems.