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Defining palliative opportunities in pediatric patients with bone and soft tissue sarcomas
Jonathan Ebelhar1, Kristen Allen2, Nicholas DeGroote2
1Department of Pediatrics, Emory University, Atlanta, Georgia.
Insights
Pediatric sarcoma patients have frequent palliative care opportunities, especially near end-of-life. Many patients miss out on timely palliative care consultations, highlighting a need for better integration into oncology care.
Area of Science:
- Pediatric Oncology
- Palliative Care
- Sarcoma Research
Background:
- Pediatric sarcoma patients face significant morbidity and reduced quality of life.
- Palliative care (PC) integration in pediatric oncology is not systematically defined.
- Opportunities for PC support in pediatric sarcoma patients are largely unknown.
Purpose of the Study:
- To systematically define and evaluate palliative care opportunities in pediatric sarcoma patients.
- To determine the frequency, timing, and associated factors of palliative care needs.
- To assess current palliative care consultation rates in this population.
Main Methods:
- Retrospective review of pediatric patients (0-18 years) with bone/soft tissue sarcomas who died between 2012-2017.
- Defined nine a priori palliative opportunities (e.g., disease progression, symptom management, end-of-life).
- Analyzed demographic, disease, and treatment data, evaluating opportunities over quartiles from diagnosis to death.
Main Results:
- Sixty patients had a mean of nine palliative opportunities, with most occurring in the final quartile of their disease course.
- Palliative care consultation was received by 30% of patients, a median of 2.2 months before death.
- Opportunity type and number did not vary by demographics or diagnosis; consultation was independent of these factors.
Conclusions:
- Pediatric sarcoma patients experience recurrent events requiring palliative care, increasing as end-of-life approaches.
- Enhanced palliative care utilization can mitigate suffering and improve family coping.
- Further research is needed to explore PC opportunities across cancer types and integrate this framework into clinical practice.
Background:
Pediatric patients with sarcomas experience significant morbidity and compromised quality of life throughout their course. These times could be viewed as opportunities for increased subspecialty palliative care (PC). Systematically defining opportunities for additional PC support has not occurred in pediatric oncology. The frequency, timing, and associated factors for palliative opportunities in pediatric patients with sarcomas are unknown.
Methods:
A priori, nine palliative opportunities were defined (disease progression or relapse, admission for symptoms, social concerns or end-of-life, intensive care or bone marrow transplant admission, phase 1 trial or hospice enrollment, do-not-resuscitate status). A single-center retrospective review was conducted on patients aged 0-18 years with bone/soft tissue sarcomas who died from January 1, 2012 to November 30, 2017. Demographic, disease, and treatment data were collected. Descriptive statistics were performed. Opportunities were evaluated over quartiles from diagnosis to death.
Results:
Patients (n = 60) had a mean of nine (SD = 4) palliative opportunities with the majority occurring in the last quartile of the disease course. Number and type of opportunities did not differ by demographics or diagnosis. Eighteen patients (30%) received PC consultation a median of 2.2 months (interquartile range [IQR] 11.5) prior to death. Consultation was unrelated to diagnosis or total opportunities.
Conclusions:
Patients with sarcomas incur repeated events warranting subspecialty PC, which increase toward the end-of-life. Increased PC utilization may help decrease suffering and bolster family coping during these episodes. Additional work should further refine if opportunities differ across cancers, and how to incorporate this framework into clinical oncology care to prevent missed opportunities for PC.
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