Using Information Technology to Improve Outcomes for Children Living with Cancer

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This application plans to develop a program, Symptom Monitoring & Systematic Assessment and Reporting System in Young Survivors (SyMon-SAYS), to enable timely mitigation and management of unrelieved symptoms for children with cancer. The SyMon-SAYS will administer, score, interpret and display the results of symptom assessments in “real-time” between clinic visits in cancer care ambulatory settings, when patients are likely to be more symptomatic. We hypothesize that this system can facilitate prompt identification of problematic symptoms; consequently, with the availability of graphical symptom reports over time, timely providers’ clinical care, and an informative symptom management booklet, patients will become informed about their condition and take an active role in treatment, which will further improve self-management skills. Better self-management promotes adherence to treatment plans, builds individual capacity, improves interaction between patients and caregivers, reduces the use of medical specialists, and optimizes clinical outcomes across the lifespan throughout the treatment and disease continua. The proposed waitlist control randomized trial is based on our preliminary study testing the feasibility of the patient-centered SyMon-SAYS in a pediatric oncology clinic. Results showed that the SyMon-SAYS was acceptable to patients/parents and they were willing to use it during their routine clinical care. Clinicians expressed interest in receiving reports yet preferred to review them in the medical record. Based on what we learned from this pilot, we now propose to integrate the SyMon-SAYS system into the electronic health record (EHR), to streamline the alert notification with clinician workflow by using EHR (Epic) messaging, and to include a broader range of symptoms. Patients and parents will complete the weekly symptom assessment and review the symptom report by logging into the Epic MyChart patient portal. Instead of using a standalone SyMon-SAYS app, we will align the SyMon-SAYS program with the Epic EHR. We plan to conduct a single institution modified waitlist control randomized trial of 200 children (ages 8-17) with cancer over 16 weeks (Group A: 16-week SyMon-SAYS intervention; Group B: 8-week usual care and then 8-week SyMon-SAYS intervention) to achieve the following specific aims: 1) evaluate effectiveness of SyMon-SAYS at week-8 and its maintenance effects at week-16. We hypothesize that Group A (versus Group B) will report decreased parent-perceived barriers to managing their children’s symptoms, decreased patient symptom burden, increased patient and parent self-efficacy, and ultimately increased patient HRQOL at week-8 and no significant differences between Groups A & B at week-16; 2) evaluate influential factors to Aim 1, including contextual patient and parent factors, adherence to the SyMon- SAYS intervention, and symptom communication; and 3) evaluate predictors of adherence to the SyMon-SAYS intervention and preference of SyMon-SAYS versus usual care.