QOL-09. SyMon-SAYS: A symptom monitoring and reporting program for children with cancer

Unrelieved symptom burden due to cancer treatments can lead to poor psychosocial functioning and decreased health-related quality of life (HRQOL) for patients and their families. Barriers at the patient, healthcare provider and system levels can contribute to poor symptom management. Funded by the US National Cancer Institute, we have developed the Symptom Monitoring & Systematic Assessment and Reporting System in Young Survivors (SyMon-SAYS) program. SyMon-SAYS is a technology-based program with the potential to minimize symptom management barriers by routinely collecting and interpreting patient-reported outcomes in pediatric oncology ambulatory settings in a manner that is efficient, actionable by clinicians, supports engagement of patients and families with their health and care, and improves clinical processes and outcomes. This is a single institution modified waitlist control 16-week randomized trial of 200 children (ages 8-17) with cancer and their parents/guardians. Participants in the intervention phase will complete a symptom checklist weekly via the electronic health record patient portal. Scores exceeding a pre-defined threshold will trigger an alert to the treatment team, which will review the report and take appropriate actions. Participants will complete a separate battery of questionnaires assessing HRQOL at baseline and weeks 8 and 16. The recruitment is in progress. As of today, we have recruited 57 patients/parents. 29 completed 16-week study (15 intervention & 14 wait-list). Preliminary results showed SyMon-SAYS system was easy (92%) and convenient (85%) to use. Parents were satisfied (74.1%) with the SyMon-SAYS program. Comparing to the waitlist control, intervention group parents reported significantly less concerns on not having enough time to discuss their child’s symptoms with treating clinicians (p=0.0022), and disagreed that it is not necessary to treat their child’s symptoms as they will go away (p=0.04). We anticipate completing the recruitment by the end of 2023.