Annemarie Bösch1, Julia Wager2, Boris Zernikow2, Ralf Thalemann3, Heidi Frenzel4, Heiko Krude5, Tobias Reindl1. 1. 1 Charité Universitätsmedizin Berlin Campus Virchow-Klinikum , Clinic for Paediatrics, Department of Oncology/Haematology, Berlin, Germany . 2. 2 Paediatric Palliative Care Centre, Children's and Adolescent's Hospital, Datteln, and Department of Children's Pain Therapy and Paediatric Palliative Care, Witten/Herdecke University , Faculty of Health, School of Medicine, Germany . 3. 3 Charité Universitätsmedizin Berlin Campus Virchow-Klinikum , Clinic for Paediatrics, Center for Chronically Sick Children, Berlin, Germany . 4. 4 HealthTwiSt and Franz-Volhard Clinic , Charité Universitätsmedizin, Berlin, Germany . 5. 5 Charité Universitätsmedizin Berlin Campus Virchow-Klinikum , Institute of Experimental Pediatric Endocrinology, Berlin, Germany .
Abstract
BACKGROUND: The 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. OBJECTIVE: This 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/ SUBJECTS: A 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. RESULTS: The 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. CONCLUSION: A 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.
BACKGROUND: The 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. OBJECTIVE: This 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/ SUBJECTS: A 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. RESULTS: The 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. CONCLUSION: A 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.
Authors: Maureen E Lyon; Jessica D Thompkins; Karen Fratantoni; Jamie L Fraser; Sandra E Schellinger; Linda Briggs; Sarah Friebert; Samar Aoun; Yao Iris Cheng; Jichuan Wang Journal: BMJ Support Palliat Care Date: 2019-07-25 Impact factor: 4.633
Authors: Dania Schuetze; Cornelia Ploeger; Michaela Hach; Hannah Seipp; Katrin Kuss; Stefan Bösner; Ferdinand M Gerlach; Marjan van den Akker; Antje Erler; Jennifer Engler Journal: Palliat Med Date: 2021-12-20 Impact factor: 4.762