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 enrollment, compared to four dyads among the group with neuro-oncology or solid tumor diagnoses that submitted no symptom reports following enrollment.
In response to the individual symptom reports (217 from 37 dyads) clinicians reported that clinical actions were taken 25% of the time, including counseling the use of medications already prescribed (43), prescribing a new medication or altering dosage of a currently prescribed medication (22), performing laboratory tests (1) or imaging (3), and obtaining a consult from another service or team (4).
All participating healthcare providers (n=42) understood the symptom reports, and all, except one, found the reports useful and expressed interest in continuing to receive them. A quarter of providers reported that reviewing the symptom reports enhanced communication with the patient or family. Patients and caregivers found the questions easy to understand and the system easy to use. Half of the patients (51.7%) reported that submitting symptom reports helped them "a lot" or "completely" to have conversations with their doctors, and most (82.8%) expressed interest in continuing to provide symptom reports after study participation ended. Fewer caregivers (34.4%) endorsed that submitting symptom reports helped them to have conversations with the patient's doctor, but 50% noted that they helped "a lot" or "completely" to keep track of their child's health and to feel more connected to the healthcare team.
Conclusion: Patient and caregiver symptom self-reporting is a feasible and acceptable strategy for symptom monitoring in pediatric patients hospitalized for chemotherapy. Patients and their caregivers find this method of symptom reporting beneficial. Further, healthcare providers find the information useful and influential in medical decision-making. Larger scale studies are needed to further assess implementation and impact of symptom monitoring.
No relevant conflicts of interest to declare.
Asterisk with author names denotes non-ASH members.