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Implementation of daily patient-reported outcome measurements to support children with cancer
Andreas Meryk1, Gabriele Kropshofer1, Benjamin Hetzer1
1Department of Pediatrics, Medical University of Innsbruck, Innsbruck, Austria.
Insights
Daily symptom monitoring using patient-reported outcome measures (PROMs) is feasible for children with cancer. This approach enables early symptom detection and timely clinical interventions, improving patient-directed cancer care.
Area of Science:
- Pediatric Oncology
- Digital Health
- Patient-Reported Outcomes
Background:
- Patient-directed cancer care emphasizes the importance of symptom self-reporting.
- Current clinical services lack robust systems for daily symptom monitoring and integration into care.
- There is a need to evaluate daily patient-reported outcome measures (PROMs) in pediatric oncology.
Purpose of the Study:
- To assess the feasibility and value of daily PROMs in children undergoing chemotherapy.
- To evaluate the usability and satisfaction with a web-based daily reporting system.
Main Methods:
- A web-based, child-friendly patient portal (ePROtect) was used for daily health status recording.
- Feasibility was assessed through completion rates and time.
- Usability, satisfaction, and clinical interventions triggered by symptom changes were evaluated.
Main Results:
- Twelve children (median age 7.2 years) participated, generating 891 daily reports.
- High completion rates were observed (median 85.3% inpatient, 55.9% outpatient).
- Mean completion time was 47.6 seconds; severe symptoms prompted interventions in 57 cases, with high patient/proxy satisfaction (>90%) and usefulness (>80%) reported.
Conclusions:
- Daily symptom monitoring via PROMs is feasible for children aged 5-18 with newly diagnosed cancer.
- This monitoring facilitates early identification of symptoms and timely clinical action.
- The ePROtect system demonstrates value in enhancing patient-directed cancer care.
Background:
Several stakeholders, including patients and health care providers, suggest symptom self-reporting measurements for a more patient-directed cancer control approach. However, services tailored to measure daily reporting and implementing it in clinical care are lacking. This study aimed to evaluate the feasibility and value of daily patient-reported outcome measures (PROMs) by children receiving chemotherapy for cancer.
Methods:
Health status was recorded daily with a web-based child-friendly patient portal (ePROtect). Following aspects of feasibility and usability were assessed: (a) the completion rate and time, (b) user feedback on usability and satisfaction, and (c) the performed interventions if moderate to severe symptom deterioration was noted.
Results:
Twelve children (median age: 7.2 years) were included. A total number of 891 daily reports were collected during the study period; the median percentage of ePROtect completion days was 85.3% (interquartile range [IQR] 64.2-100.0) and 55.9% (IQR 51.9-76.9) for inpatient and outpatient stay, respectively. Mean time to complete the questionnaire was 47.6 seconds. Severe symptoms were reported in 14.7% of measurement time points, which led to prompt health care interventions in 57 cases, including extension of supportive care (n = 37) and pre-emptive inpatient admissions (n = 5). Over 80% of the patients (10/12) and their proxies (16/18) provided feedback with high rating for satisfaction (>90%) and usefulness (>80%) of ePROtect.
Conclusion:
Our study shows that daily symptom monitoring is feasible for all children with newly diagnosed cancer aged 5-18 years. Monitoring offers the opportunity to identify symptoms early and trigger appropriate clinical action.
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