文章：

儿童恶性肿瘤放射治疗幸存者健康状态患者报告调查的实施与评估

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

原文发布日期：12 November 2025

DOI: 10.3390/cancers17223634

类型: Article

开放获取: 是

英文摘要：

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.

摘要翻译： 

**背景/目的：** 转诊至三级和四级医疗中心的儿童放疗幸存者的长期随访存在困难，限制了预后监测。为此，我们实施了一项电子健康状态调查以收集幸存者数据。 **方法：** 健康状态调查面向在本机构接受根治性放疗、年龄在1个月至25岁之间的幸存者发放。入选标准包括确认存活且拥有有效的电子邮箱联系方式。采用描述性统计和比较性检验对调查回复情况和人口统计学特征进行总结。调查共向876名符合条件的参与者发送，在2023年12月至2024年3月期间收到322份回复，回复率为36.8%。 **结果：** 完成调查将随访时间中位数延长了18.3个月（约1.5年），从而改善了超出末次病历记录就诊的监测。受访者报告了既往记录中未记录的12例复发、5例第二原发恶性肿瘤和7例死亡，使得无事件生存统计数据变化幅度高达7.5%。大多数受访者（90.1%）报告过去一年内有就医经历，许多人提供了关于持续健康问题、医疗服务提供者联系情况以及社会结局的更新信息。 **结论：** 健康状态调查是一种可复制的、用于延长三级和四级医疗中心患者随访的方法，能够捕获既往未报告的临床、社会及教育结局。通过用患者报告的信息补充病历数据，这一经济高效的工具支持有针对性的年度随访，并有助于识别长期幸存者照护的趋势。

原文链接：

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