Rollins School of Public Health, Emory, 1518 Clifton Road, Atlanta, GA 30322, USA.
Department of Pediatrics, Emory University; Aflac Cancer and Blood Disorder Center, Children's Healthcare of Atlanta, 1405 Clifton Rd, Atlanta, GA 30322, USA.
Contemp Clin Trials. 2019 Oct;85:105819. doi: 10.1016/j.cct.2019.105819. Epub 2019 Aug 7.
Children diagnosed with cancer are living longer and the survivor population is growing. However, most survivors develop late effects of radiation and chemotherapy shortly to years after completion of therapy, and the receipt of follow-up visits that are recommended by the Children's Oncology Group (COG) is suboptimal nationally.
The aims of this study are to: 1) evaluate the impact of a patient-controlled electronic personal health record (ePHR) and system (SurvivorLink) on care visit attendance, risk-based surveillance, and other secondary outcomes (i.e., patient activation, quality of life (QOL)); 2) measure the use, acceptability, and perceived usefulness of, and satisfaction with SurvivorLink; and 3) assess facilitators and barriers to implementation.
This hybrid effectiveness-implementation, clustered randomized control trial (RCT) evaluates the effect of SurvivorLink among pediatric cancer survivors and their parents on receipt of follow-up cancer care. We will recruit 20 pediatric survivor clinics with half receiving the intervention and half acting as a waitlist control. Parents of survivors and survivors will complete baseline, 3 and 12 month surveys that assess SurvivorLink use, patient self-efficacy, and intentions to return for follow-up. We will use mixed methods and multi-informant assessment to assess implementation outcomes (i.e., acceptability, feasibility, appropriateness).
New approaches are needed to facilitate the receipt of long-term follow-up care among pediatric cancer survivors. This study will assess whether SurvivorLink is effective in increasing receipt of follow-up cancer care. Moreover, it will explore the influences of context and other moderators of clinical practice change in pediatric cancer survivorship.
被诊断患有癌症的儿童的存活时间延长，幸存者人数不断增加。然而，大多数幸存者在治疗完成后不久至数年内会出现放疗和化疗的晚期效应，而且全国范围内接受儿童肿瘤学组（COG）推荐的随访就诊的情况并不理想。
本研究的目的是：1）评估患者自控电子个人健康记录（ePHR）和系统（SurvivorLink）对就诊出勤率、基于风险的监测以及其他次要结果（即患者激活、生活质量（QOL））的影响；2）衡量 SurvivorLink 的使用情况、可接受性、感知有用性和满意度；3）评估实施的促进因素和障碍。
这项混合有效性-实施、聚类随机对照试验（RCT）评估了 SurvivorLink 对儿科癌症幸存者及其父母接受后续癌症护理的影响。我们将招募 20 个儿科幸存者诊所，其中一半接受干预，另一半作为候补对照组。幸存者及其父母将在基线、3 个月和 12 个月时完成调查，评估 SurvivorLink 的使用情况、患者自我效能感以及返回接受随访的意愿。我们将使用混合方法和多信息源评估来评估实施结果（即可接受性、可行性、适宜性）。
需要新的方法来促进儿科癌症幸存者接受长期随访护理。本研究将评估 SurvivorLink 是否能有效增加接受后续癌症护理的比例。此外，它还将探讨 SurvivorLink 在儿科癌症生存者中的影响，以及影响临床实践变化的背景和其他调节因素。
