Feasibility of daily symptom-reporting by caregivers during induction treatment for pediatric cancer–an observational cohort study

For children below 5 years of age, observer-reported outcome measures (ObsROMs) are recommended to assess their health status. This study aimed to evaluate if daily ObsROMs completed by caregivers are feasible to use in routine clinical care to monitor child health during induction treatment for cancer.

Daily clinical outcome assessments (COAs) were implemented in clinical care via a web-based patient portal (ePROtect). The following aspects were compared between children aged 1–4 years (observer-reported) and 5–7 years (child-self-reported): (a) completion rate of daily COAs, (b) number of adverse events, and (c) COA scores to examine potential differences.

Twenty-seven participants were included (13 observer for children 1–4 years and 14 children aged 5–7 years). Both completed a total of 1573 daily COAs with a median completion rate of 65.6% (IQR, 56.7%–75.6%) for 1–4 year-olds and 66.1% (IQR, 51.1%–84.4%) for 5–7 year-olds. The number of adverse events was similar in both groups, with only slightly more episodes of febrile neutropenia occurring in younger patients (P = 0.03). Weekly and total mean symptom scores were similar in most domains except for nausea and appetite loss, where observers reported slightly greater symptom burden. Nevertheless, the frequency of days with moderate or severe symptoms was similar in both groups.

This observational study shows that caregivers were willing and able to complete ObsROMs on a daily basis for patients aged 1–4 years, and that reported symptoms are similar to those from older patients who can self-report their own health.