Using Information Technology to Improve Outcomes for Children Living with Cancer

该应用程序计划开发一个程序，症状监测和系统评估， 年轻幸存者报告系统（SyMon-SAYS），以便及时缓解和管理 癌症儿童的症状未缓解。SyMon-SAYS将管理、评分、解释和显示 在癌症护理门诊环境中的临床访问之间的“实时”症状评估的结果， 当病人的症状更明显的时候我们假设这个系统可以促进即时的 识别有问题的症状;因此，随着图形症状报告的可用性， 时间，及时提供者的临床护理，以及信息丰富的症状管理手册，患者将成为 了解他们的病情，并在治疗中发挥积极作用，这将进一步改善自我管理 skills.更好的自我管理促进了对治疗计划的坚持，建立了个人能力，提高了 患者和护理人员之间的互动，减少医疗专家的使用，并优化临床 在整个治疗和疾病连续性的整个生命周期的结果。建议的waitlist控件 随机试验是基于我们的初步研究，测试以患者为中心的SyMon-SAYS在 儿科肿瘤诊所结果表明，SyMon-SAYS可被患者/家长接受， 愿意在日常临床护理中使用。临床医生表示有兴趣接收报告， 我更愿意在病历中查看它们。根据我们从该试点项目中了解到的情况，我们现在建议， 将SyMon-SAYS系统集成到电子健康记录（EHR）中，以简化警报通知 通过使用EHR（Epic）消息传递与临床医生工作流程相结合，并包括更广泛的症状。患者 和家长将完成每周症状评估，并通过登录 Epic MyChart患者门户网站。而不是使用一个独立的SyMon-SAYS应用程序，我们将调整SyMon-SAYS Epic EHR的应用我们计划进行一项单机构改良等待名单对照随机试验， 200名癌症儿童（年龄8-17岁），16周以上（A组：16周SyMon-SAYS干预; B组： 8-一周的常规护理，然后8周的SyMon-SAYS干预），以实现以下具体目标：1） 在第8周评价SyMon-SAYS的有效性，并在第16周评价其维持效果。我们假设 A组（与B组相比）将报告父母认为的管理孩子的障碍减少， 症状，减少患者症状负担，增加患者和父母的自我效能，最终 第8周时患者HRQOL增加，第16周时A组和B组之间无显著差异; 2） 评估目标1的影响因素，包括患者和父母的背景因素，对SyMon的依从性， SAYS干预和症状交流; 3）评估遵守SyMon-SAYS的预测因素 SyMon-SAYS与常规护理干预和偏好。

This application plans to develop a program, Symptom Monitoring & Systematic Assessment and Reporting System in Young Survivors (SyMon-SAYS), to enable timely mitigation and management of unrelieved symptoms for children with cancer. The SyMon-SAYS will administer, score, interpret and display the results of symptom assessments in “real-time” between clinic visits in cancer care ambulatory settings, when patients are likely to be more symptomatic. We hypothesize that this system can facilitate prompt identification of problematic symptoms; consequently, with the availability of graphical symptom reports over time, timely providers’ clinical care, and an informative symptom management booklet, patients will become informed about their condition and take an active role in treatment, which will further improve self-management skills. Better self-management promotes adherence to treatment plans, builds individual capacity, improves interaction between patients and caregivers, reduces the use of medical specialists, and optimizes clinical outcomes across the lifespan throughout the treatment and disease continua. The proposed waitlist control randomized trial is based on our preliminary study testing the feasibility of the patient-centered SyMon-SAYS in a pediatric oncology clinic. Results showed that the SyMon-SAYS was acceptable to patients/parents and they were willing to use it during their routine clinical care. Clinicians expressed interest in receiving reports yet preferred to review them in the medical record. Based on what we learned from this pilot, we now propose to integrate the SyMon-SAYS system into the electronic health record (EHR), to streamline the alert notification with clinician workflow by using EHR (Epic) messaging, and to include a broader range of symptoms. Patients and parents will complete the weekly symptom assessment and review the symptom report by logging into the Epic MyChart patient portal. Instead of using a standalone SyMon-SAYS app, we will align the SyMon-SAYS program with the Epic EHR. We plan to conduct a single institution modified waitlist control randomized trial of 200 children (ages 8-17) with cancer over 16 weeks (Group A: 16-week SyMon-SAYS intervention; Group B: 8-week usual care and then 8-week SyMon-SAYS intervention) to achieve the following specific aims: 1) evaluate effectiveness of SyMon-SAYS at week-8 and its maintenance effects at week-16. We hypothesize that Group A (versus Group B) will report decreased parent-perceived barriers to managing their children’s symptoms, decreased patient symptom burden, increased patient and parent self-efficacy, and ultimately increased patient HRQOL at week-8 and no significant differences between Groups A & B at week-16; 2) evaluate influential factors to Aim 1, including contextual patient and parent factors, adherence to the SyMon- SAYS intervention, and symptom communication; and 3) evaluate predictors of adherence to the SyMon-SAYS intervention and preference of SyMon-SAYS versus usual care.