2025-11-14 東京大学,日本医療研究開発機構
◆研究は、疾患ごとの専門科、成人移行期の断絶、本人のみを対象とした制度設計などが重なり、複合的な病態をもつ患者が既存枠組みに合致しない実態を示した。これにより支援の欠落、家族の負担増、教育現場でも同様の「制度の隙間」が生じることが示された。
◆研究グループは、①重複障害を扱う視点を医学教育に組み込むこと、②ライフコース・家族単位での連携支援、③障害者権利条約に基づく当事者参画を制度設計に反映することの重要性を強調。誰一人取り残さないインクルーシブ医療の実現に向けた新たな概念として「医療の区分化」を提唱した。
図1:医療における区分化
<関連情報>
- https://www.rcast.u-tokyo.ac.jp/ja/news/release/20251114.html
- https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(25)02267-6/abstract
医療区分化:日本における染色体22q11.2欠失症候群の患者
Medical compartmentalisation: a patient with chromosome 22q11.2 deletion syndrome in Japan
Kiyoto Kasai ∙ Yousuke Kumakura ∙ Junko Kitanaka ∙ Shin-ichiro Kumagaya ∙ Scott D Stonington
The Lancet Published: November 15, 2025
DOI:https://doi.org/10.1016/S0140-6736(25)02267-6
Cocoro is a 22-year-old woman with chromosome 22q11.2 deletion syndrome. At age 1 year, she had surgery in a children’s hospital in a metropolitan area of Japan to repair tetralogy of Fallot. Her intelligence quotient of 70 put her on the border of intellectual disability, and when she was aged 6 years she was diagnosed with autism spectrum disorder. She had fatigability due to mild heart failure and skeletal malformations. When enrolling in elementary school, the school board decided that she was not eligible for a school for students with physical or intellectual disabilities. Cocoro thus entered a regular school, where she continued to struggle. She was scared of loud noises, but her teachers simply told her to “be stronger”. By the time she was in high school, Cocoro was frequently ridiculed. A music teacher mocked her inability to play harmonica due to her cleft palate. Cocoro had a psychotic episode; she started having screaming fits at home, saying she saw ghosts and heard her teacher’s voice telling her not to come to school.
