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

Online ISSN: 2187-2988 Print ISSN: 0911-1794
特定非営利活動法人日本小児循環器学会 Japanese Society of Pediatric Cardiology and Cardiac Surgery
〒162-0801東京都新宿区山吹町358-5アカデミーセンター Japanese Society of Pediatric Cardiology and Cardiac Surgery Academy Center, 358-5 Yamabuki-cho, Shinju-ku, Tokyo 162-0801, Japan
Pediatric Cardiology and Cardiac Surgery 33(6): 444-447 (2017)
doi:10.9794/jspccs.33.444

症例報告Case Report

小児心疾患患者の成人移行に必要な社会支援の最適化:2事例報告Socially Optimal Support for Transition of Two Pediatric Heart Disease Cases

1埼玉医科大学総合医療センター看護部Nursing Department, Saitama Medical Center Saitama Medical University ◇ Saitama, Japan

2埼玉医科大学総合医療センター小児循環器部門Pediatric Cardiology, Saitama Medical Center Saitama Medical University ◇ Saitama, Japan

受付日:2017年3月29日Received: March 29, 2017
受理日:2017年11月20日Accepted: November 20, 2017
発行日:2017年11月1日Published: November 1, 2017
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小児期発症心疾患から成人移行した患者の医療費は症例により高額で,小児期の支援終結や患者・家族の高齢化は生活や医療継続可否に大きな影響を与える.適切な社会支援を得るための介入が必要であった1例と,高額であったが困窮しなかった1例を対比検討する.症例1は海外でFontan術後,19歳で帰国後,肺血管拡張薬追加により医療費が著増し,社会支援手続きの遅れにより困窮した.症例2は24歳の肺動脈性肺高血圧症で肺高血圧治療薬投与,在宅酸素等により医療費は高額で,指定難病手続きにより負担が大きく軽減した.小児心疾患患者の成人移行に際し,個々の社会支援の最適化は複雑・難解で,個々人・居住地により大きく異なり,制度も急速に変容する.小児期発症心疾患から成人移行した患者が最適な社会支援を享受でき,困窮しないよう,成人期社会支援に対する医療者の理解と,院内多職種連携が重要と考える.

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.

Key words: social support; insurance; aging; adult congenital heart disease; medical expenses

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This page was last modified on 2017-12-26T14:08:31.102+09:00


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