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The Scope of Practice of an Embedded Pediatric Palliative Oncology Clinic
Hee Su Park1, Nicholas P DeGroote2, Anna Lange2
1Emory University School of Medicine (H.S.P), Atlanta, Georgia, USA.
Insights
Pediatric palliative care (PPC) visits for children with cancer cover many topics, including symptom management and care coordination. More domains are addressed closer to end-of-life (EOL) and in solid tumor cases.
Area of Science:
- Pediatric Oncology
- Palliative Care
- Health Services Research
Background:
- Pediatric palliative care (PPC) is crucial for improving end-of-life (EOL) care in children with cancer.
- The specific content and scope of PPC visits within pediatric oncology settings remain poorly understood.
Purpose of the Study:
- To investigate the range of topics and domains discussed during PPC visits for pediatric cancer patients.
- To analyze how the content of PPC visits varies based on patient demographics, diagnosis, visit type, and proximity to EOL.
Main Methods:
- Retrospective cohort study of 351 pediatric cancer patients (ages 0-27) seen in an academic PPC clinic (2017-2022).
- Data abstracted from electronic health records, PPC clinic database, and Cancer Registry.
- Analysis of documented discussion domains (goals of care, symptom management, care coordination) by patient characteristics and EOL proximity.
Main Results:
- 1919 outpatient PPC visits were analyzed, revealing a broad scope of practice.
- More domains were addressed in visits within 90 days of EOL compared to those further out (median 12.0 vs. 10.0 domains).
- Pain and hospice collaboration were more frequent near EOL; solid tumors discussed more symptom management subdomains, particularly pain (79.9%).
Conclusions:
- PPC practice in pediatric oncology is comprehensive, addressing numerous subdomains per visit.
- Key discussion areas include care coordination with oncology teams and psychosocial support for patients and families.
- The intensity and focus of PPC interventions, particularly symptom management, increase closer to EOL and for specific diagnoses like solid tumors.
Context:
Pediatric palliative care (PPC) improves end-of-life (EOL) outcomes for children with cancer. Though PPC visits are the 'intervention' in studies focused on EOL care, the content of PPC visits within pediatric oncology is poorly understood.
Objectives:
This study aimed to understand the scope of PPC practice during visits for children with cancer and their families.
Methods:
This was a retrospective cohort study of patients 0-27 years with cancer seen in PPC clinic within an academic pediatric oncology center between 2017 and 2022. During each PPC visit, documenting providers chose the domains discussed or managed (goals of care, symptom management, and care coordination with respective subdomains). Data was abstracted from the electronic health record, PPC clinic database, and Cancer Registry. The differences in frequency and addressed domains were analyzed by demographics, visit type, diagnosis group, and proximity to EOL.
Results:
Across 351 patients, 1919 outpatient PPC visits occurred. Median domains were higher in visits <90 days vs. 91+ days from EOL (12.0 vs. 10.0; p < 0.0001); pain and hospice collaboration were particularly discussed closer to EOL. Psychological symptoms like anxiety (30.7% vs. 21.1%; p < 0.001) were addressed more in follow-ups than initial visits. Compared to brain tumor or leukemia/lymphoma visits, solid tumor visits addressed more symptom management subdomains, especially pain (79.9%; p < 0.0001).
Conclusion:
The scope of PPC practice is broad and varied. Each visit encompasses many subdomains, the most common being care coordination with oncology teams and helping patients/families cope with the disease. More domains were addressed in solid tumor visits and near EOL.
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