||5U01CA246612-04 Interpret this number
||Northwestern University At Chicago
||Using Information Technology to Improve Outcomes for Children Living with Cancer
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.
Using IT to Improve Outcomes for Children Living With Cancer (SyMon-SAYS): Protocol for a Single-Institution Waitlist Randomized Controlled Trial.
, Jensen S.E.
, Peipert J.D.
, Mitchell S.A.
, Garcia S.F.
, Cella D.
, Goldman S.
, Lenzen A.
JMIR research protocols, 2023-09-08; 12, p. e50993.