3522 - Implementation and Evaluation of a Patient-Reported Health Status Survey for Survivors of Childhood Malignancies Treated with Radiation

J. Joshi¹, M. P. Lawell¹, K. W. Allison¹, B. Bajaj¹, S. Gallotto¹, M. L. Rose², N. J. Tarbell¹, S. M. MacDonald¹, and T. I. Yock¹; ¹Department of Radiation Oncology, Massachusetts General Hospital, Harvard Medical School, Boston, MA, ²Department of Radiation Oncology and Applied Sciences, Dartmouth Cancer Center, Dartmouth Health, Lebanon, NH

Purpose/Objective(s): Obtaining long-term follow-up on patients externally referred to quaternary care centers for radiotherapy is challenging. To improve longitudinal outcomes data, we designed and distributed an electronic Health Status Survey (HSS). We aim to describe the distribution of the HSS to survivors of pediatric malignancies treated with radiotherapy at our institution. Materials/

Methods: The Health Status Survey was developed in a data collection web application to serve as a patient-reported instrument in facilitating post-treatment follow-up. Eligible participants included patients aged 1 month to 25 years at the time of radiotherapy treatment at a single institution, who were reported to be alive at the time of survey distribution and who had an email on file. A chart review was performed to assess disease status, survivorship, and latest follow-up. Formatting with branching logic for brevity, the survey was designed for web-based completion within five minutes. Questions were designed to collect patient contact information, specialist follow-ups, disease status changes, symptoms, and educational/employment status. Surveys were distributed via email, with a maximum of three reminders sent every six days to non-responders. Survey responses and completion time data were analyzed.

Results: Data was collected between 12/2023-3/2024. Surveys were sent to 944 emails, 52 of which were undeliverable. Of 892 participants that received at least one survey, 322 (37%) responded. Respondents were predominately treated for CNS tumors (64%) and the median age at survey completion was 18.7 years. The median time to survey completion for emailed surveys was 6 days (0-51 days). Of the survey respondents, 143 (44.4%) responded to the initial invitation email, 106 (32.9%) to the first reminder email, 51 (15.8%) to the second reminder email, and 22 (6.8%) to the third. Survey completion extended the last available clinical status on record for patients by a median of 14.6 months (0.26-191.1 months). Of participants that responded, 91% reported being seen by a clinician in the past year. Respondents reported 15 (4.7%) recurrences, 6 (1.9%) second malignancies, and 7 (2.2%) deaths that were not previously recorded through chart review.

Conclusion: The Heath Status Survey facilitates the extension of patient follow-up, providing valuable insights for guiding survivorship follow-up protocols. In the setting of quaternary care, patient-reported outcomes data gathered can supplement medical records examined through chart review in providing a more thorough understanding of survivorship and interventions used. The HSS can be used annually as a tool for quaternary care centers for radiotherapy to quickly assess patient status, and over time, identify trends in survivorship to inform optimization of care.