Feasibility of Weekly Electronic Patient- and Proxy-Reported Outcome Measures in Pediatric Oncology.

Abstract

Background: Electronic patient-reported outcome measures (ePROMs) benefit adult cancer care, but their use in pediatric cancer care is limited.

Objectives: To explore the feasibility of collecting weekly ePROMs from pediatric cancer patients and/or their caregivers and to describe children's levels of symptom burden, distress, and cancer-related quality of life.

Methods: A prospective and longitudinal cohort study was undertaken at one tertiary children's cancer center. Children (2-18 years)/caregivers completed ePROMs with validated measures for distress, symptom burden, and cancer-related quality of life weekly for 8 weeks.

Results: Seventy children/caregivers participated in the study, and 69% completed ePROMs at all 8 weeks. Distress and cancer-related quality of life significantly improved over time. However, at week 8, almost half of the participants still reported high levels of distress. Symptom burden decreased over time, with the youngest and the oldest age groups (2-3 and 13-18 years) reporting the highest number of symptoms with severe burden.

Conclusions: Weekly collection of ePROMs in pediatric cancer care is feasible. Although distress, quality of life, and symptom burden improve over time, there is a need for timely assessment and interventions to improve symptoms, high levels of distress, and issues that negatively affect quality of life.

Implications for practice: Nurses are ideally placed to intervene, assess, and monitor symptoms and to provide symptom management advice to pediatric cancer patients and caregivers. Findings from this study may inform the design of models of pediatric cancer care to improve communication with the healthcare team and patient experience of care.