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Raising Awareness: Real World Data On Palliative Care for Advanced Pediatric Cancers in Bavaria
Nadja Nehls1,2,3, Maja Börner1,2,3, Sebastian Ziegelmayer1
1Department of Pediatrics and Children's Cancer Research Center, TUM School of Medicine and Health, Kinderklinik München Schwabing, Technical University of Munich, Munich, Germany.
Insights
Palliative care integration in pediatric oncology is significantly delayed and underutilized, even in high-income countries. Most children receive these crucial services late in their disease trajectory, missing early benefits.
Area of Science:
- Pediatric Oncology
- Palliative Care
- Health Services Research
Background:
- Early integration of palliative care in pediatric oncology is recommended but often underutilized.
- Barriers frequently delay the implementation of palliative care services for children with cancer.
- This study examines real-world data on palliative care integration in pediatric oncology within a high-income country.
Purpose of the Study:
- To assess the utilization and timing of palliative care services in pediatric oncology patients.
- To investigate factors influencing palliative care initiation and duration.
- To analyze the impact of palliative care on patient outcomes.
Main Methods:
- Retrospective observational study of 373 pediatric oncology patients (under 18) across six German centers (2017-2022).
- Data collected on palliative care (onset, duration, frequency, place of death), disease characteristics, performance status, therapy, and survival.
- Analysis of palliative care timing and duration relative to disease trajectory and tumor type, and outcomes based on palliative care status.
Main Results:
- Only 42% (157/373) of patients received palliative care services.
- Palliative care was initiated late, typically in the last third of the disease trajectory, with only 16.8% starting at diagnosis.
- Children with hematological malignancies had significantly lower involvement in palliative care services.
Conclusions:
- Despite known benefits, palliative care remains significantly underutilized and delayed in pediatric oncology patients.
- There are critical gaps in the timely integration of palliative care, even in well-resourced healthcare systems.
- Further efforts are needed to overcome barriers and improve early access to palliative care for children with cancer.
Introduction:
Early integration of palliative care in children with cancer provides a variety of positive effects and is recommended at diagnosis. However, barriers often delay its implementation, and palliative care remains underutilized. This study provides real-world data on palliative care and integration in pediatric oncology in a high-income country.
Methods:
In this retrospective observational study, data derived from patients with refractory, progressive, or relapsed malignancies under the age of 18 years were collected from six German pediatric oncology centers (2017-2022). In addition to palliative data (onset, and duration of palliative care services, frequency of contact, place of death), disease entity, relapse/progression frequency, Karnofsky Performance Scale Index, therapy, and overall survival were collected. The frequency, timepoint of initiation and the duration of palliative care services were examined in relation to the disease trajectory (diagnosis to death/censoring) and tumor entity. Outcomes (overall survival, Karnofsky Performance Scale Index, place of death) were analyzed based on palliative care status.
Results:
Only 157 (42%) of the 373 patients received palliative care services. The mean duration of palliative involvement was 6.0 months with a mean disease trajectory of 31.4 months for patients receiving palliative care. On average, palliative care was initiated in the last third of the disease trajectory. Most of the 157 patients (65.9%) received palliative care during their final relapse/progression and only 16.8% at diagnosis. There was a significantly lower frequency of palliative care involvement for children with hematological malignancies.
Conclusion:
Despite the substantial benefits, this study highlights significant delays and underutilization of palliative care for pediatric oncology patients, even in a high-income country.
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