Pediatric Patient-Reported Symptom Tracking in Oncology (Pedi-PReSTO): A Feasibility Study

Background: Online patient and caregiver self-reporting for symptom and toxicity monitoring during chemotherapy can inform proactive clinical management and ameliorate serious adverse events. In adults, patient-reported symptom monitoring during chemotherapy improves quality of life, decreases hospitalizations, and lengthens survival. The feasibility of this approach in pediatrics has not been established. This study assesses the implementation of daily electronic patient-reported symptom monitoring for pediatric oncology patients hospitalized for chemotherapy. Methods: The Common Terminology Criteria for Adverse Events (CTCAE) is used to grade adverse events in cancer trials. The Pediatric PRO-CTCAE is a questionnaire for children to self-report symptoms while undergoing cancer treatment. The study population was patients 7-18 years of age, English-literate, with a planned admission for chemotherapy expected to last 48 hours at a single tertiary care pediatric institution. Patients and caregivers were asked to respond daily, following text or email prompts, to Pediatric PRO-CTCAE questions addressing ten symptoms via REDCap (web-based data capture). Each morning, completed symptom reports were emailed to the frontline clinicians. No instructions were given regarding the use of patient-reported information. Utilization of symptom reports was determined by electronic survey administered to the same clinician several hours following receipt of the report. Provider acceptability was assessed monthly. Patient and caregiver satisfaction was evaluated after discharge. Results: Fifty-five patients and their caregivers were invited to participate and 45 patient/caregiver dyads enrolled (82%). Chemotherapy regimens included those for leukemia/lymphoma (40%), bone marrow transplant (BMT, 11%), solid tumor (36%) and neuro-oncology (13%). Mean patient age was 12.8 years (range 7-18). Mean length of hospitalization was 8.5 days (median 4, range 2-42). Approximately half the evaluable dyads (48.8%) generated at least one symptom report (patient or caregiver) daily; three-quarters (75.6%) submitted symptom reports at least half of all hospitalized days. When stratified to include only leukemia/lymphoma and BMT patients, mean length of stay was 13.8 days (median 6, range 2-42), and proportions of daily symptom report submissions were comparable to the overall cohort. However, all dyads with leukemia/lymphoma or BMT completed at least one symptom report following enrollmen