Pedi-PRESTO: Pediatric Patient-Reported Symptom Tracking in Oncology
More than 40,000 children undergo cancer treatment in the U.S. annually and all patients experience symptoms and side effects from their therapy. These can range in severity from minor to life-threatening and cause significant distress and suffering. The use of patient-reported outcomes, which are standardized reports of a patient's health condition directly from the patient or caregiver, can make patients and their parents feel more in control of their well-being and help their doctors to control their symptoms. Indeed, in adults undergoing chemotherapy, the use of patient-reported outcomes for symptom monitoring improves quality of life, decreases hospitalizations and increases survival. Despite the benefits seen in adults, the use of patient-reported outcomes in pediatric oncology is not common.
This study will investigate the feasibility, benefits and barriers to using patient-reported symptom monitoring for children with cancer, setting the stage for future studies examining the impact of this type of symptom monitoring on quality of life, hospitalization rate and illness severity in childhood cancer. Ultimately, patient-reported outcomes have the potential to help make children feel better, contribute to patient empowerment, and assist parents and children in having discussions with their doctors about the things they care about most. When combined with other health data, and deployed within the healthcare model, patient-reported symptom information can help tailor medical care, refine healthcare delivery and, potentially, help doctors to recognize and avoid serious adverse events. This study is an essential first step in establishing the benefits of these measures for children with cancer.