Preferences of Pediatric Oncology Patients and Caregivers on the Availability of Patient Results in an Online Patient Portal.

Purpose: Access to cancer-related data in online patient portals is not uniform. Perspectives of pediatric patients with cancer and caregivers on their desires and experiences accessing cancer-related data via an online patient portal have been poorly described. These perspectives are crucial for informing both hospital-level policies and governmental regulations. This study aims to explore the preferences of pediatric oncology patients and their caregivers regarding the timing of medical test result release into online portals.

Methods: A cross-sectional survey was conducted at a tertiary academic pediatric center in Toronto, Canada. English-speaking pediatric patients with cancer age 12 years and older, as well as their caregivers, were invited to participate. A 59-question survey was administered to participants between June and August 2024.

Results: A total of 105 participants, including 40 patients and 65 caregivers, completed the survey. Forty-one (53.9%) participants reported that a health care provider had discussed with them the possibility that they might be viewing test results online before their care team had reviewed the result. Immediate release of test results was preferred across most testing domains, with >80% of participants favoring immediate access, even for sensitive oncology-related results. Less than 1% of participants believed that genetic or cancer recurrence results should be withheld until reviewed by an oncology provider. No participants reported increased worry as a result of viewing test results online.

Conclusion: This study reveals a strong preference among pediatric oncology patients and their caregivers for immediate access to test results, challenging traditional concerns about the psychological impact of early release. These findings suggest that oncology practices should consider aligning their policies with patient and caregiver preferences.