Empowering Pediatric Patients through Patient-Reported Symptom Monitoring

While clinician reports are often the standard for recording adverse side effects of cancer treatment, patient reported outcomes (PROs) are an increasingly important assessment tool through which patients directly provide information on their symptoms, overall health, and quality of life. The integration of PROs into routine clinical care has been beneficial for treating adults with cancer, empowering them in their treatment and increasing quality of life. The use of PROs in pediatrics is a newer concept, however, and there is limited guidance on its incorporation into routine care.

This body of work investigates the benefits, barriers, and possibilities of using patient-reported symptom monitoring for children with cancer. A study published in Cancer demonstrated the feasibility of patient-reported electronic symptom monitoring for pediatric patients hospitalized for chemotherapy. Patients age 7 and up were prompted by text or email to electronically self-report on ten symptoms, which were emailed to their clinical care teams. These reports drove clinical action 21% of the time, and most patients and clinicians felt that the system and process were easy to use. These findings set the stage for continued investigation on the best ways to integrate this patient-reported data into the electronic health record in order to become a standard part of pediatric clinical care.

This work explores how best to harness patient-reported outcomes to tailor and improve medical care for pediatric patients with cancer and to empower pediatric patients and their families. Incorporating PROs into routine clinical care for children with cancer is an innovative solution to improve care delivery, reduce symptom burden, and improve quality of life for the more than 40,000 children undergoing cancer treatment in the U.S. every year.

Alex’s Lemonade Stand Young Investigator’s Award; Conquer Care Foundation/Anna Braglia Endowed Young Investigator Award in Cancer Supportive Care