Evaluating the Use of Patient-Reported Non-Routine Events in Pediatric and Radiation Oncology: A Pilot Study

Abstract

This prospective pilot study evaluated (1) the potential for collecting structured longitudinal data on patient-reported non-routine events (PNREs) (i.e., events that deviate from expected or optimal care) during pediatric and adult radiation cancer therapies and (2) the potential relationship between PNREs, Patient-Reported Outcomes Measures (PROMs), and unplanned treatment events (UTEs). Along with PNREs, data were collected on patient’s background, distress, quality of life, hospital system care experience rating, and treatment intensity, during a 3-month period; UTEs were retrospectively captured through review of patients’ records. Initial results suggest a relationship exists between both PNREs and safety-relevant PNREs with patient distress, quality of life, and care experience ratings. UTEs occurred more often in pediatric patients and were primarily related to patients’ underlying disease. This systems-safety approach to identifying at-risk points in treatment pathways has the potential to provide actionable information for the mitigation of shortcomings in cancer therapy.