PraeKids: diagnosis prevalence of life-threatening and life-limiting diseases in children and adolescents in Germany

Introduction: In Germany, a prevalence of approximately 50,000 children and adolescents living with life-threatening and life-limiting diseases is currently assumed. This number, which is communicated in the supply landscape, is based on a simple transfer of empirical data from England.Methods: In cooperation with the German National Association of Health Insurance Funds (GKV-SV) and the Institute for Applied Health Research Berlin GmbH (InGef), the billing data of the specific treatment diagnoses documented by statutory health insurance funds for the years 2014-2019 were analyzed and - for the first time - prevalence data of affected 0- to 19-year-olds were collected. In addition, the data from InGef was used to calculate the prevalence by diagnosis grouping, the Together for Short Lives (TfSL) groups 1-4, and based on the (updated) coding lists from the English prevalence studies.Results: The data analysis determined a prevalence range of 319,948 (InGef - adapted Fraser list) to 402,058 (GKV-SV), with consideration of the TfSL groups. The TfSL-1 group represents the largest group with 190,865 patients.Discussion and conclusion: This study is the first to provide the prevalence of 0- to 19-year-olds living with life-threatening or life-limiting diseases in Germany. Since the case definitions and the included care settings (outpatient/inpatient) differ in the research design, the prevalence values collected from the GKV-SV and InGef are also different. Due to the very heterogeneous course of the diseases, chances of survival, and mortality rates, no direct conclusions can be drawn for palliative and hospice care structures.