Prevalence and Mortality of Life-Threatening and Life-Shortening Diseases in Children and Adolescents in Germany

This study provides prevalence and mortality data for 0- to 19-year-old children and adolescents with medically documented life-threatening and life-shortening diagnoses in Germany. A secondary data analysis of more than 12 million insured persons documented by the statutory health insurance funds in Germany from 2014 to 2019 was conducted in collaboration with the German Association of Statutory Health Insurance Funds (GKV-SV) and the Institute for Applied Health Research Berlin (InGef), whose data sets vary in collection methods. Diagnosis prevalence and mortality were calculated based on selected International Classification of Diseases, 10th Revision (ICD-10) codes reported in inpatient and outpatient care settings. In Germany, the diagnosis prevalence of life-threatening and life-shortening diseases in children and adolescents ranges between 319 948 (InGef—adapted Fraser list) and 402 058 (GKV-SV). These diagnoses can be differentiated into different disease groups (Together-for-Short-Lives TfSL 1-4). The TfSL-1 group in which curative treatment can be feasible represents the largest one, with 190 865 persons. In 2019, approximately 1458 children and adolescents with life-threatening and life-shortening diseases died. The current diagnostic and mortality data of affected children and adolescents in Germany serve as the essential foundation for further research into the health care of the target group.