Williamson Rebecca, Meacham Lillian, Cherven Brooke, Hassen-Schilling Leann, Edwards Paula, Palgon Michael, Espinoza Sofia, Mertens Ann
Aflac Cancer and Blood Disorders Center at Children's Healthcare of Atlanta, Atlanta, GA, USA,
J Cancer Surviv. 2014 Sep;8(3):355-63. doi: 10.1007/s11764-014-0346-6. Epub 2014 Feb 18.
Cancer SurvivorLink™, www.cancersurvivorlink.org , is a patient-controlled communication tool where survivors can electronically store and share documents with healthcare providers. Functionally, SurvivorLink serves as an electronic personal health record-a record of health-related information managed and controlled by the survivor. Recruitment methods to increase registration and the characteristics of registrants who completed each step of using SurvivorLink are described.
Pediatric cancer survivors were recruited via mailings, survivor clinic, and community events. Recruitment method and Aflac Survivor Clinic attendance was determined for each registrant. Registration date, registrant type (parent vs. survivor), zip code, creation of a personal health record in SurvivorLink, storage of documents, and document sharing were measured. Logistic regression was used to determine the characteristics that predicted creation of a health record and storage of documents.
To date, 275 survivors/parents have completed registration: 63 were recruited via mailing, 99 from clinic, 56 from community events, and 57 via other methods. Overall, 66.9 % registrants created a personal health record and 45.7 % of those stored a health document. There were no significant predictors for creating a personal health record. Attending a survivor clinic was the strongest predictor of document storage (p < 0.01). Of those with a document stored, 21.4 % shared with a provider.
Having attended survivor clinic is the biggest predictor of registering and using SurvivorLink.
Many survivors must advocate for their survivorship care. Survivor Link provides educational material and supports the dissemination of survivor-specific follow-up recommendations to facilitate shared clinical care decision making.
Cancer SurvivorLink™（网址：www.cancersurvivorlink.org）是一个由患者控制的沟通工具，幸存者可通过它以电子方式存储文档并与医疗服务提供者共享。从功能上来说，SurvivorLink充当电子个人健康记录——由幸存者管理和控制的与健康相关信息的记录。本文描述了增加注册量的招募方法以及完成使用SurvivorLink每个步骤的注册者特征。
通过邮件、幸存者诊所和社区活动招募儿科癌症幸存者。确定每位注册者的招募方法以及是否参加了美国家福来保险公司（Aflac）幸存者诊所。记录注册日期、注册者类型（家长与幸存者）、邮政编码、在SurvivorLink中创建个人健康记录、文档存储以及文档共享情况。使用逻辑回归来确定预测创建健康记录和文档存储的特征。
截至目前，275名幸存者/家长完成了注册：63名通过邮件招募，99名来自诊所，56名来自社区活动，57名通过其他方法招募。总体而言，66.9%的注册者创建了个人健康记录，其中45.7%存储了健康文档。创建个人健康记录没有显著的预测因素。参加幸存者诊所是文档存储的最强预测因素（p < 0.01）。在存储了文档的人中，21.4%与医疗服务提供者进行了共享。
参加幸存者诊所是注册和使用SurvivorLink的最大预测因素。
许多幸存者必须为自己的生存护理进行倡导。Survivor Link提供教育材料，并支持传播针对幸存者的后续随访建议，以促进共同的临床护理决策。
