Williamson Rebecca S, Cherven Brooke O, Gilleland Marchak Jordan, Edwards Paula, Palgon Michael, Escoffery Cam, Meacham Lillian R, Mertens Ann C
Rebecca Williamson, MPH, 2015 Upper Gate Drive, 4th Floor, Atlanta, GA 30322, Phone: 404.785.9929 Fax: 404.785.9248, Email:
Appl Clin Inform. 2017 Mar 15;8(1):250-264. doi: 10.4338/ACI-2016-11-RA-0189.
Background and Objectivs: Survivors of pediatric and adolescent cancer are at an increased risk of chronic and debilitating health conditions and require life-long specialized care. Stand-alone electronic personal health records (ePHRs) may aid their self-management. This analysis characterizes young adult survivors and parents who meaningfully use an ePHR, Cancer SurvivorLink, designed for survivors of pediatric and adolescent cancer.
This was a retrospective observational study of patients seen at a pediatric survivor clinic for annual survivor care. Young adult survivors and/or parent proxies for survivors <18 years old who completed ePHR registration prior to their appointment or within 90 days were classified as registrants. Registrants who uploaded or downloaded a document and/or shared their record were classified as meaningful users.
Overall, 23.7% (148/624) of survivors/parents registered and 38% of registrants used SurvivorLink meaningfully. Young adult registrants who transferred to adult care during the study period were more likely to be meaningful users (aOR: 2.6 (95% CI: 1.1, 6.1)) and used the ePHR twice as frequently as those who continued to receive care in our institution's pediatric survivor clinic. Among survivors who continued to receive care at our institution, being a registrant was associated with having an annual follow-up visit (aOR: 2.6 (95% CI: 1.2, 5.8)).
While ePHRs may not be utilized by all survivors, SurvivorLink is a resource for a subset and may serve as an important bridge for patients who transfer their care. Using SurvivorLink was also associated with receiving recommended annual survivor care.
背景与目的：儿童和青少年癌症幸存者患慢性衰弱性健康疾病的风险增加，需要终身的专科护理。独立的电子个人健康记录（ePHR）可能有助于他们的自我管理。本分析描述了有意义地使用专为儿童和青少年癌症幸存者设计的电子个人健康记录“癌症幸存者链接”（Cancer SurvivorLink）的年轻成年幸存者及其父母。
这是一项对在儿科幸存者诊所接受年度幸存者护理的患者进行的回顾性观察研究。在预约前或90天内完成ePHR注册的年轻成年幸存者和/或18岁以下幸存者的家长代理人被归类为注册者。上传或下载文档和/或分享其记录的注册者被归类为有意义的用户。
总体而言，23.7%（148/624）的幸存者/家长进行了注册，38%的注册者有意义地使用了“幸存者链接”。在研究期间转至成人护理的年轻成年注册者更有可能成为有意义的用户（调整后比值比：2.6（95%置信区间：1.1，6.1）），并且使用ePHR的频率是那些继续在本机构儿科幸存者诊所接受护理的人的两倍。在继续在本机构接受护理的幸存者中，成为注册者与进行年度随访相关（调整后比值比：2.6（95%置信区间：1.2，5.8））。
虽然并非所有幸存者都会使用ePHR，但“幸存者链接”是一部分人的资源，可能是转诊患者的重要桥梁。使用“幸存者链接”也与接受推荐的年度幸存者护理相关。
