Efforts to manage symptoms experienced by children with chronic illness have not kept pace with advances in their treatments. Various barriers to timely symptom management have been proposed, at the patient, healthcare provider and system levels. Thus, an effective and easy-to-use symptom monitoring and reporting program is warranted for children with chronic illness, and their families, throughout the treatment continuum including long-term follow-up. We believe this need can be addressed by using a patient-oriented, technology-based, symptom monitoring system, which reports symptoms experienced by children with chronic illness to their parents and healthcare providers, will improve patient-centered care. The overall objective of the proposed work is to build the Symptom Monitoring and Reporting System in Pediatric Populations (SyMon- Peds), using oncology as a starting point. We believe SyMon-Peds can facilitate productive interactions between patients, families and healthcare providers as described in Wagner's model for improvement of chronic illness care. Given the exploratory nature of the proposed study, we will focus only on a single symptom, fatigue, as it is a nearly universal experience for cancer patients of all ages across the disease and treatment continuums. Studies have also shown that fatigue is perceived as being among the most frequently experienced and distressing cancer symptoms, but often also the symptom that is least effectively treated. We plan to achieve the study aims by recruiting 100 cancer patients 7-17 years old and one of their parents to complete an 8-week SyMon-Peds intervention. Pediatric cancer patients and their parents will both log in to the SyMon-Peds system weekly, either by phone or via the internet, to report perceptions of the children's fatigue. Fatigue scores are graphically represented in reports available to parents and oncology clinicians at future medical visits. Further, if children's fatigue scores reach or surpass a predefined threshold, a research nurse will contact their parents and oncologists to provide care recommendations in real-time.
Specific aims to be achieved via the completion of the study are: 1) evaluate the feasibility of implementing the SyMon-Peds system in pediatric oncology clinics, its acceptability by parents of children with cancer and the children's clinicians, and parents'satisfaction with it;and 2) explore the efficacy of the SyMon-Peds in managing fatigue. We anticipate that SyMon-Peds will be feasible, acceptable and well-received by parents and providers. In a single-arm study, we anticipate that patient-reported fatigue and its parent-proxy will show improvement from baseline, setting the stage for a definitive randomized trial that includes a standard care comparison. We will also measure fatigue-related distress, perceived barriers to fatigue management, and health protective behaviors, to identify possible mediators of the effectiveness of this novel IT intervention. We will also measure general health-related quality of life as a broader, secondary endpoint.
We propose to develop and evaluate the feasibility of implementing the Symptom Monitoring and Reporting System for Pediatric Populations (SyMon-Peds) in pediatric oncology clinics, its acceptability by parents of children with cancer and the children's oncology clinicians, and parents'satisfaction with it. We also propose to explore the efficacy of the SyMon-Peds system in managing fatigue.