• Annemarie Bösch, Julia Wager, Boris Zernikow, Ralf Thalemann, Heidi Frenzel, Heiko Krude, and Tobias Reindl.
• 1 Charité Universitätsmedizin Berlin Campus Virchow-Klinikum , Clinic for Paediatrics, Department of Oncology/Haematology, Berlin, Germany .
• J Palliat Med. 2018 Feb 1; 21 (2): 169-176.

BackgroundThe increasing number of children with life-threatening and life-limiting conditions requires an individualized approach and additional supportive care in hospitals. However, these patients' characteristics and their prevalence in a pediatric tertiary hospital setting have not been systematically analyzed.ObjectiveThis study aimed to determine the proportion of hospitalized children who are receiving care for life-threatening diseases with feasible curative treatments and for life-limiting diseases (LLDs) with inevitable premature death as opposed to care for acute or chronic diseases; additionally, it sought to compare patient characteristics, clinical features, and symptoms within these subgroups.Design/Setting/SubjectsA cross-sectional survey of 208 patients was conducted at a large tertiary pediatric care center through standardized interviews with the responsible medical teams. Patient subgroups were defined as those with acute, chronic, life-threatening, or LLDs.ResultsThe comparisons of patient subgroups showed distinct differences and revealed that nearly half of all inpatients suffer from life-threatening (20%) or LLDs (27%), with a high proportion of rare diseases (82%). They experienced a high burden of symptoms in all parameters of clinical features, including high demand for medications and nursing care.ConclusionA substantial proportion of pediatric inpatients suffered from life-threatening or LLDs, as well as rare diseases, indicating a high burden of symptoms and a high need for additional care. The results suggest a substantial need to implement pediatric palliative care structures in tertiary care centers for patients in critical and terminal conditions.

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