Symptom Documentation in Unstructured Palliative Care Notes of Children and Adolescents With Cancer

Context: Children and adolescents with cancer experiencing complex symptoms can benefit from subspeciality palliative care. However, standardized methods of symptom documentation by pediatric palliative care teams are lacking. Understanding current approaches to symptom documentation will inform next steps to optimize symptom support.

Objective: To explore the documentation of symptom prevalence and characteristics in unstructured clinical notes by pediatric palliative care clinicians caring for children and adolescents with cancer.

Methods: We reviewed unstructured clinical notes documented by the pediatric palliative care team for 115 children and adolescents with cancer. Symptom-related data were abstracted and evaluated using content analysis based on the Memorial Symptom Assessment Scale 10-18 instrument items. We also evaluated documentation of severity and distress for six commonly experienced symptoms in pediatric cancer: difficulty sleeping; feelings of sadness; lack of energy; nausea/vomiting; pain; and worry.

Results: We identified 1420 symptoms in 662 clinical notes for 106 patients. We identified a median of 5 individual symptoms (IQR = 3-8.5) per patient. Pain was the most frequently documented symptom (n = 79 patients, 74.5%). We identified at least one of the six commonly experienced symptoms in 88 patients (83%). Documentation of the associated severity and distress of these symptoms was inconsistent.

Conclusion: Palliative care clinicians routinely documented the co-occurrence of multiple complex symptoms experienced by children and adolescents with cancer. Unstructured progress notes captured evidence of symptom impact on daily life. Clinicians may benefit from a systematic approach to document symptoms in the clinical record which supports symptom identification and communication across clinical teams.