Polysymptomatology in Pediatric Patients Receiving Palliative Care Based on Parent-Reported Data

Area of Science:

• Pediatric Palliative Care
• Symptom Management
• Complex Chronic Conditions

Background:

• Pediatric palliative care addresses advanced illness in children, often involving significant pain and symptoms.
• Limited data and overreliance on clinician reports hinder symptom management advancements.
• Parental reporting offers a valuable perspective on symptom burden in pediatric palliative care.

Purpose of the Study:

• To describe symptoms in pediatric palliative care patients using validated parental reports.
• To analyze symptom prevalence and severity across demographic and condition categories.
• To identify key symptoms impacting children receiving palliative care.

Main Methods:

• Cross-sectional analysis of baseline data from 501 pediatric palliative care patients across 7 US children's hospitals.
• Parental reports collected using the modified Memorial Symptom Assessment Scale.
• Data stratified by patient demographics and complex chronic condition categories.

Main Results:

• The most common symptoms reported by parents included pain (63.7%), lack of energy (58.9%), irritability (55.9%), drowsiness (49.3%), and shortness of breath (46.3%).
• Most children (73.3%) experienced 5 or more symptoms, with a median of 7 symptoms per patient.
• Older patients reported more symptoms, and a subgroup in the top 10% experienced a median of 12 symptoms.

Conclusions:

• Children in pediatric palliative care frequently experience polysymptomatology.
• A notable subset of patients endures a high burden of severe symptoms.
• Comprehensive assessment and management of multiple symptoms are crucial in pediatric palliative care.