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Published on: August 1, 2019
Feasibility of Weekly Electronic Patient- and Proxy-Reported Outcome Measures in Pediatric Oncology
Xiomara Skrabal Ross1, Paula Condon, Patsy Yates
1Author Affiliations: Cancer and Palliative Care Outcomes Centre, Centre for Healthcare Transformation (Drs Skrabal Ross, Yates, and Bradford), and Centre for Children's Health Research (Dr Skrabal Ross, Mrs Condon, Mr Walker, Mr Herbert, and Dr Bradford), Queensland University of Technology, and Oncology Service Group, Queensland Children's Hospital (Mrs Condon, Mr Walker, and Mr Herbert), Children's Health Queensland, South Brisbane, Australia.
Insights
Collecting electronic patient-reported outcome measures (ePROMs) weekly is feasible in pediatric cancer care. While symptoms and quality of life improve, ongoing distress necessitates timely interventions for better patient outcomes.
Area of Science:
- Pediatric Oncology
- Digital Health
- Patient-Reported Outcomes
Background:
- Electronic patient-reported outcome measures (ePROMs) are valuable in adult cancer care but underutilized in pediatric settings.
- Limited research exists on the feasibility and impact of ePROMs in pediatric oncology.
Purpose of the Study:
- To assess the feasibility of weekly ePROMs collection in pediatric cancer patients and caregivers.
- To characterize symptom burden, distress, and quality of life in this population.
Main Methods:
- A prospective, longitudinal cohort study involving 70 pediatric cancer patients (ages 2-18) and/or their caregivers.
- Weekly completion of validated ePROMs for distress, symptom burden, and quality of life over 8 weeks.
Main Results:
- High feasibility with 69% completing all 8 weeks of ePROMs.
- Significant improvements in distress and quality of life were observed over time.
- Persistent high distress levels in nearly half of participants by week 8, with notable symptom burden in the youngest and oldest age groups.
Conclusions:
- Weekly ePROMs collection is feasible and beneficial in pediatric cancer care.
- Despite improvements, ongoing distress and symptom burden highlight the need for timely assessment and intervention.
- Findings support integrating ePROMs into care models to enhance patient-provider communication and experience.
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.
