Self-Reported Health Status Survey Creation and Distribution Outcomes in a Large Cohort of Pediatric Oncology Patients Treated with Proton Radiation Therapy

Abstract

Purpose

Most pediatric patients receiving radiation therapy at Massachusetts General Hospital are referred from outside institutions and later return to their original care providers. As quaternary care centers, proton therapy centers face unique challenges in tracking patient follow-up, yet obtaining longitudinal data is crucial for assessing radiation therapy outcomes. We implemented an annual direct-to-patient survey to improve follow-up data collection.

Methods and Materials

The survey was designed to be completed in <5 minutes and records contact information, health status (recent follow-up and with which specialists, imaging, the status of treated disease/secondary tumors, additional treatments, and symptoms), and social updates. Surveys were sent annually as mailed letters with a quick response code or by e-mail using research electronic data capture software. Data were collected between February 2019 and June 2022. Approval was obtained to send surveys to oncology patients prospectively enrolled in a clinical trial or the Pediatric Proton/Photon Consortium Registry at our single institution.

Results

Of the 472 participants who were sent at least 1 survey, 236 (50%) responded. Patients who received surveys via e-mail were 1.6 times as likely to respond than those who received surveys via mail (P < .001). The median time (days) to survey completion for mailed and e-mailed surveys were 20 and 3, respectively. Survey completion extended the last available clinical status on record for patients by a median of 8.5 (<1-63.3) months.

Conclusions

Survey implementation improved follow-up data collection, with e-mail being more effective than mail as a distribution method. Adaptation and utilization of our survey in other tertiary and quaternary centers may improve the collection of patient outcomes.