Research Appraisals

The Tohoku journal of experimental medicine

Age-Specific Trends and Health Status of Children Aged 12-19 Years with Specified Chronic Pediatric Diseases in Japan - Insights from a National Database Study

Japan has a national financial assistance program called the "Specified Chronic Pediatric Diseases of Japan" (SCPDJ; also called "Shouman" in Japanese) for children with chronic diseases designated by the Japanese Ministry of Health, Labour and Welfare. The information of registrants in the system is digitized for research. We utilized the database to clarify the characteristics of children with diseases designated by the SCPDJ program. Analysis was performed with a particular focus on patients aged 12-19 years, which are considered the important ages for transition support from pediatric to adult medical care. The data included 69,061 cases aged 0 to 19 years from April 2016 to March 2017. The number of registrants showed a cumulative increase from 2 years toward adulthood. There were four distribution patterns for registered age and age at onset by disease category: 1) both age and age of onset peaked at age 0; 2) age distribution was mostly flat, while the most common age of onset was age 0; 3) age distribution peaked in older age groups, while age of onset of 0 was most common; and 4) both age and age of onset peaked at older ages. Approximately half of the patients aged 12-19 years were diagnosed after reaching school age. Although the disease condition of most patients remained good, some aged 12-19 years experienced exacerbation. The database was analyzed to provide an overview of children with diseases designated by the SCPDJ program and issues related to transition to adult care systems.