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