Researchers from the Medical University of Innsbruck, Austria, asked if daily patient-reported outcome measurements (PROMs) can be integrated into routine and supportive care for children with cancer.
PROMs are emerging as an important component of adult cancer care, but little has been done with regard to PROMs for paediatric cancer care. The study notes that less than 1% of paediatric clinical trials submitted to ClinicalTrials.gov and EudraCT (European Union Drug Regulating Authorities Clinical Trials) use PROMs as a primary end point.
The study included 40 paediatric patients with cancer with 7082 therapy days who completed 4410 daily PROMs during a median follow-up of 145.5 days, yielding a completion rate of 60.1%. The most common moderate or severe symptom reported was physical functioning, followed by pain, sleep disturbance and nausea and appetite loss.
The results of the study have been published in Jama Network Open.
The researchers, lead by Dr Andreas Meryk, used a unique, web-based approach for daily child self-reporting and parent-based proxy reporting (ePROtect) and demonstrated its feasibility for implementation in clinical care. Children and adolescents aged 5 to 18 years and proxies for children aged 1 to 4 years were approached and trained in the use of the ePROtect software by the professional health care team.
Patients were instructed to complete the symptom monitoring once per day during the entire treatment period. If a patient did not have a mobile device, the health care team provided a tablet device during the patient’s hospital stay.
Symptom monitoring was checked daily before the morning round; in the case of relevant deviations (symptom score ≤50 of 100 possible), the results were discussed immediately at the patient’s bedside. If the patient and the caregiver were not in the hospital, they were instructed to complete the questionnaire as if they were hospitalized. Oversight was provided daily by the medical team, and if the symptom score was 50 or less, the patients or their caregivers were immediately called by the physicians to confirm the reported symptoms, discuss the situation, and initiate an intervention if needed.
The team concluded that electronic symptom self-measuring with ePROtect was very well received for inpatient and outpatient use, can provide early detection of toxic effects, and can anticipate necessary admissions or medical interventions. In the context of increasing demands regarding patient self-advocacy and self-management, symptom self-reporting allowed patients to participate more actively in their therapy and may help improve their quality of life. For health care professionals, ePROtect facilitates communication and awareness of symptoms, which can result in more efficient treatment of patients.
The team have now prospectively enrolled a larger number of patients in an effort to better understand the utility of patients’ health status measurement.
Paper: Meryk A, Kropshofer G, Hetzer B, et al. Use of Daily Patient-Reported Outcome Measurements in Pediatric Cancer Care. JAMA Netw Open. 2022;5(7):e2223701. doi:10.1001/jamanetworkopen.2022.23701
