Symptom Monitoring and Reporting System for Pediatric Chronic Illness

Children experience distressing physical symptoms, most prevalently fatigue, from cancer and its treatment. Efforts to manage cancer-related symptoms in children have not kept pace with advances in cancer treatments. Factors contributing to poor symptom management include delay in reporting symptoms to clinicians, limited time during clinic visits, and logistical and organizational barriers that limit the quality of symptom care. Timely identification of symptoms is fundamental to the overall success of cancer treatment. The Symptom Monitoring & Systematic Assessment in Young Survivors (SyMon-SAYS), a patient-oriented, technology-based symptom monitoring and reporting system, was developed to fill this need.

This project evaluated the feasibility of implementing SyMon-SAYS in pediatric oncology clinics using fatigue as a prototype symptom. Patients ages 7 to 21 and their parents were enrolled in the study. Patients were eligible if they had a cancer diagnosis, received any type of treatment or completed it within the previous 6 months, were English-speaking, and had sufficient cognitive and motor abilities to operate a telephone keypad, computer keyboard, or mouse.

The specific aims of this project were to:

• Evaluate the feasibility of implementing the SyMon-SAYS (formerly SyMon-Peds) system in a pediatric oncology clinic, its acceptability (defined as perceived usefulness) by parents of children with cancer, and the clinicians’ and parents’ satisfaction with the system.
• Explore the efficacy of the SyMon-SAYS (formerly SyMon-Peds) in managing fatigue.

Fifty-seven patients and their parents completed the study. Over an 8-week period, weekly fatigue assessments were completed by the patients or their parents via the Internet or interactive voice response (IVR) by phone. When pre-defined fatigue score thresholds were met, emails with fatigue reports were forwarded to clinicians. The patients, their parents, and their clinicians received cumulative graphic reports of fatigue scores prior to clinic visits at 4- and 8- weeks post-baseline. An exit survey was completed by patients and their parents at their last visit. Clinicians were also asked to complete surveys.

Parents reported their children having significantly worse fatigue than patients’ own reports. Ninety-three percent of patients and 78 percent of parents found SyMon-SAYS very-to- extremely easy to complete. The vast majority of parents reported that they were satisfied with SyMon-SAYS; 60 percent reported that it helped deal with their child’s fatigue; and 81 percent reported being willing to manage fatigue and other symptoms with the system.

Evaluations from clinicians indicated that most felt participation did not add to their workload, but only 36 percent felt that it helped with their fatigue management of patients. Despite this, 68 percent stated that most children would benefit from the system, and 67 percent said they would be willing to use it on an on-going basis. Clinicians reported that the reports were understandable, useful for fatigue management, and did not make the visit longer. A majority of clinicians did not think the report helped them to prepare to see patients, with treatment planning or decisionmaking, or to focus on the most important issues to discuss with patients and their parents.

The project team concluded that the SyMon-SAYS system is feasible to implement and acceptable to patients and parents. Future efforts will focus on better integrating the system into clinical workflow in order to improve clinician acceptance.