Life-Limiting Conditions at a University Pediatric Tertiary Care Center: A Cross-Sectional Study
Annemarie Bösch1, Julia Wager2, Boris Zernikow2
11 Charité Universitätsmedizin Berlin Campus Virchow-Klinikum , Clinic for Paediatrics, Department of Oncology/Haematology, Berlin, Germany .
Insights
Nearly half of hospitalized children have life-threatening or life-limiting diseases (LLDs), often rare, experiencing significant symptoms and requiring extensive care. This highlights the need for specialized pediatric palliative care in hospitals.
Area of Science:
- Pediatric critical care
- Palliative medicine
- Rare diseases
Background:
- Increasing numbers of children have life-threatening and life-limiting conditions.
- These children require individualized and supportive hospital care.
- Systematic analysis of these patients in pediatric tertiary settings is lacking.
Purpose of the Study:
- Determine the proportion of hospitalized children with life-threatening or life-limiting diseases (LLDs).
- Compare patient characteristics, clinical features, and symptoms across disease subgroups.
- Differentiate from children with acute or chronic diseases.
Main Methods:
- Cross-sectional survey conducted at a large tertiary pediatric care center.
- Standardized interviews with responsible medical teams.
- 208 patients analyzed and categorized into acute, chronic, life-threatening, or LLD subgroups.
Main Results:
- Nearly 50% of inpatients had life-threatening (20%) or LLDs (27%).
- A high proportion (82%) had rare diseases.
- Patients experienced a high symptom burden and required significant medication and nursing care.
Conclusions:
- Substantial numbers of pediatric inpatients have life-threatening/LLDs and rare diseases.
- These patients present with high symptom burden and care needs.
- Pediatric palliative care structures are essential in tertiary centers for 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.
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