Using Information Technology to Improve Outcomes for Children Living with Cancer

该应用程序计划开发一个项目，症状监测和系统评估，以及 年轻幸存者报告制度(西蒙-赛义德)，以实现及时缓解和管理 癌症儿童的未缓解症状。西蒙-赛义德将负责管理、评分、翻译和展示 在癌症护理门诊环境中的诊所就诊之间对症状进行实时评估的结果， 当患者可能出现更多症状时。我们假设这个系统可以促进提示 识别有问题的症状；因此，图形症状报告的可用性超过 时间长了，提供者的临床护理及时了，还有一本资料丰富的症状管理手册，患者就会变成 了解他们的情况并积极参与治疗，这将进一步改善自我管理 技能。更好的自我管理促进了对治疗计划的遵守，建设个人能力，提高 患者和护理人员之间的互动，减少对医疗专家的使用，并优化临床 在整个治疗和疾病持续期间的整个生命周期的结果。拟议的等待名单控制 随机试验是基于我们的初步研究，测试以患者为中心的西蒙-赛义德的可行性 儿科肿瘤科诊所。结果表明，西蒙-赛义德是可以被患者/父母接受的，他们 愿意在常规的临床护理中使用它。临床医生表示有兴趣收到报告 更喜欢在医疗记录中查看它们。根据我们从这次试点中了解到的情况，我们现在建议 将西蒙-赛义德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的工作流程，并包括更广泛的症状。病人 家长将完成每周的症状评估并登录到 EPIC MyChart患者门户网站。而不是使用一个独立的西蒙应用程序，我们将调整西蒙说 计划与史诗EHR。我们计划进行一项单一机构修改的候补名单对照随机试验 200名患有癌症的16周以上儿童(8-17岁)(A组：16周西蒙-表示干预；B组： 8周的常规护理，然后8周的西蒙-说干预)以实现以下具体目标：1) 在第8周评估西蒙-赛义德的效果，在第16周评估其维持效果。我们假设 A组(与B组相比)将报告父母在管理孩子方面的障碍减少 症状，减轻患者症状负担，提高患者和父母的自我效能，并最终 8周时患者的HRQOL增加，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，包括背景患者和父母因素，对西蒙的坚持- 说干预和症状交流；以及3)评估遵守西蒙的预测因素-说 西蒙-赛义德与常规护理的干预和偏好。

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.