JMIR Publications

ABSTRACT

Background:

Children and adolescents with cancer may experience multiple disease- and treatment-related symptoms that negatively affect health-related quality of life (HRQoL). Routine symptom surveillance thus constitutes an important component of supportive care in pediatric oncology. The Symptom Monitoring & Systematic Assessment and Reporting System in Young Survivors (SyMon-SAYS) system will administer, score, interpret and display the results of symptom assessments captured weekly using patient-reported outcomes presented via the electronic health record (EHR) portal between clinic visits in oncology ambulatory settings, when patients are likely to be more symptomatic This study is testing a digital system for routine symptom surveillance that includes EHR-based reports to clinicians and alerts for severe symptoms.

Objective:

In this randomized trial, we are examining the effects of the SyMon-SAYS system on perceived barriers to symptom management, self-efficacy, and symptom severity. Better self-management and timely clinical intervention to address of symptoms promotes adherence to treatment plans, strengthens child and parent self-efficacy, improves interactions between children, parents and their clinical providers, and optimizes clinical outcomes.

Methods:

The SyMon-SAYS system is integrated into the EHR to streamline the presentation of symptom scores and delivery of alerts for severe symptoms to clinicians using EHR (Epic®) messaging functionalities. Children (ages 8 to 17) complete the weekly symptom assessment and review the symptom report by logging into the patient portal (Epic MyChart®). This single institution waitlist control randomized trial is recruiting 200 children (ages 8-17) with cancer and their parent/guardian/caregiver. Participating dyads are randomly assigned to receive the intervention over 16 weeks (Group A: 16-week SyMon-SAYS intervention; Group B: 8-week usual care and then 8-week SyMon-SAYS intervention). Analyses will 1) evaluate efficacy of SyMon-SAYS at week-8 and the maintenance of those effects at week-16; 2) evaluate factors associated with those efficacy outcomes, such as contextual factors, adherence to the SyMon-SAYS intervention, demographic characteristics and clinical factors ; and 3) evaluate predictors of adherence to the SyMon-SAYS intervention and preference of SyMon-SAYS versus usual care.

Results:

Data collection is currently in progress. We hypothesize that at 8 weeks, those receiving the SyMon-SAYS intervention will report decreased parent-perceived barriers to managing their children’s symptoms, increased parent and child self-efficacy, decreased child symptom burden, and ultimately better child HRQoL, compared to waitlist controls. Feasibility, acceptability and engagement from the perspectives of the children with cancer, their parents, and their clinicians will be examined using mixed methods.

Conclusions:

We anticipate that this system will facilitate prompt identification of problematic symptoms. Additionally, we hypothesize that the availability of graphical symptom reports over time, and timely provider responses, children/parents will become better informed and take an active role in managing their symptoms, which will further improve clinical outcomes. Clinical Trial: NCT04789720