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

## TL;DR

A web-based survey was developed to track the long-term health of childhood cancer survivors who received radiation therapy, improving follow-up and capturing new health events.

## Contribution

The study introduces a replicable, cost-effective web-based Health Status Survey for long-term follow-up of pediatric cancer survivors.

## Key findings

- The survey extended follow-up by a median of 18.3 months beyond the last chart-documented visit.
- Respondents reported 12 recurrences, 5 new malignancies, and 7 deaths not previously documented.
- 90.1% of respondents reported a medical visit in the past year, highlighting ongoing health and social needs.

## Abstract

For pediatric patients, the survival and health events after radiation treatment for cancer are especially important to track long-term. However, patients receiving radiation often do so at centers outside of the institution they regularly visit for healthcare. This makes progress-tracking difficult after treatment is complete. To combat this, we created a replicable web-based Health Status Survey to reconnect with patients that had previously received radiation for pediatric cancers at our institution. The survey gathered updates about symptoms and health updates as well as educational and social well-being. Sending out this survey increased our knowledge of health outcomes for our patients by over 18 months in comparison to latest updates on medical chart review. The outcomes found from this survey included twenty-four major health events like cancer recurrence and new, related, cancer diagnoses. This research demonstrates that the HSS is a cost-efficient tool for long-term monitoring, ensuring survival data is accurate, and helping specialized centers better understand the evolving needs of survivors.

Background/Objectives: Long-term follow up of pediatric radiotherapy survivors referred to tertiary and quaternary centers is difficult, limiting outcome monitoring. We implemented an electronic Health Status Survey (HSS) to capture survivorship data. Methods: The Health Status Survey (HSS) was distributed to survivors aged 1 month–25 years treated with curative-intent radiotherapy at our institution. Eligibility required confirmed survival and valid email contact. Survey responses and demographics were summarized with descriptive statistics and comparative tests. Surveys were sent to 876 eligible participants, with 322 responses received (36.8%) between December 2023 and March 2024. Results: Survey completion extended follow up by a median of 18.3 months (about 1.5 years), improving monitoring beyond the last chart-documented visit. Respondents reported 12 recurrences, 5 s malignancies, and 7 deaths not captured in prior records, altering event-free survival statistics by as much as 7.5%. Most respondents (90.1%) reported a medical visit in the past year, and many provided updates on ongoing health issues, provider contact, and social outcomes. Conclusions: The HSS is a replicable method for extended follow up of tertiary and quaternary care center patients, capturing previously unreported clinical, social, and educational outcomes. By supplementing chart data with patient-reported information, this cost-effective tool supports targeted annual follow up and the identification of trends for long-term survivorship care.