Patient-reported symptom and urgent healthcare use in neuroendocrine tumors

Patients with neuroendocrine tumors (NETs) have a high burden of symptoms persisting over years after diagnosis. Patient-reported outcome measures are routinely screened for in oncology practice but seldom used for interventions. Further information about how they are linked to outcomes could improve their use. We examined the association between patient-reported symptoms and urgent healthcare use after NET diagnosis.

We conducted a population-level retrospective cohort study of adults diagnosed with NETs over 2010-2019. The exposure was Edmonton Symptom Assessment System (ESAS) scores within 2 years of diagnosis. The outcome was urgent healthcare utilization (emergency department visits and/or unplanned hospital admission) in 14 days after ESAS assessment. Logistic regression models examined the association between ESAS scores and the outcome.

A total of 4,278 patients completed 19,612 ESAS assessments. Each 1-point increment in drowsiness (OR: 1.03, 95% CI: 1.00-1.07), lack of appetite (OR: 1.09, 95% CI: 1.06-1.12), pain (OR: 1.08, 95% CI: 1.05-1.11), and poor well-being (OR: 1.05, 95% CI: 1.01-1.09) scores was associated with higher urgent healthcare use, after adjustment. We computed a global ESAS score using the highest individual symptom score (high-ESAS) for each assessment. Each 1-point increase in high-ESAS was associated with a 21% increase in the odds of urgent healthcare use (OR: 1.21, 95% CI: 1.18-1.24).

ESAS scores are associated with subsequent short-term urgent healthcare use after NET diagnosis. This indicates a potential gap in managing outpatient patient-reported symptoms. Routine monitoring of ESAS scores could be leveraged to identify patients at high risk of urgent healthcare use in need for better symptom management.