Technology-Mediated Symptom Management in Pediatric Blood and Marrow Transplant Care

摘要 意义：恶性和非恶性疾病需要血液和骨髓移植的儿童 医学上脆弱，极易出现严重的痛苦症状，如严重的疲劳、疼痛、 恶心、呕吐和睡眠障碍。患者和家长的症状管理是成功不可或缺的 消除、预防或治疗症状。使用有意义的实时数据将有助于缓解症状 对患者和家长的管理，促进更好地了解症状特征和 症状群组，制定改善健康结果的战略，以及提供个性化的 在最需要的时间和地点进行护理干预。 新兴的移动健康(MHealth)技术可以通过首先捕获 表型特征和生物标志物数据，然后直接向照顾者提供实时反馈， 患者和提供者。此外，这些技术还可以加快评估和监控 导致早期干预、持续管理和/或预防的症状，从而得到改善 结果。然而，目前几乎没有进行长期研究来评估 移动技术在儿童血液和骨髓移植(PBMT)患者症状管理中的应用。 我们对如何支持患者和护理人员使用来自移动技术的数据以 实时症状管理。此外，我们不确切地知道哪些战略将是最好的克服。 症状管理挑战。最后，我们对表型特征和 与症状和症状簇相关的生物标记物。 目的：这项探索性的混合方法研究将检验使用移动健康技术 促进PBMT患者和照顾者的症状管理。它还将探索使用 识别表型表达和发现潜在生物标记物的实时数据，以便创建 更好地管理、消除或预防PBMT症状从而促进更好健康的干预措施 结果。 方法：患者/照顾者将被要求在3个月内使用 可穿戴跟踪设备和移动健康应用程序(APP)。从这些设备生成的数据将 可视化为有助于我们理解症状表现和表型的轨迹 特点。患者和照顾者将在基线以及研究的第一个月和第三个月接受采访 讨论他们使用移动健康来监测和管理症状的挑战和成功。本研究 将把重点放在可能从移动技术的使用中大量受益的高危人群。这个 这项研究中使用的最低强度、可能具有成本效益的技术将减少患者/照顾者 跟踪和监测数据的负担。

Abstract Significance: Children requiring blood and marrow transplants for malignant and nonmalignant diseases are medically fragile and highly vulnerable to significant distressful symptoms such as profound fatigue, pain, nausea, vomiting, and sleep disturbances. Patient and parent symptom management is integral to successful elimination, prevention, or treatment of symptoms. Use of meaningful real-time data would facilitate symptom management for patients and parents and facilitate better understanding of symptom characteristics and symptom clusters, the development of strategies to improve health outcomes, and the delivery of personalized care interventions when and where they are most needed. Emerging mobile health (mHealth) technologies may enable symptom management by first capturing phenotypical characteristics and biomarker data, and then providing real-time feedback directly to caregivers, patients, and providers. Additionally, these technologies may accelerate assessment and monitoring of symptoms resulting in early intervention, sustained management, and/or prevention and thus improved outcomes. However, at present, few long-term studies have been conducted to assess the integration of mobile technologies into symptom management for pediatric blood and marrow transplant (PBMT) patients. We have limited knowledge of how to support patients and caregivers use of data from mobile technologies for real-time symptom management. Moreover, we do not know exactly which strategies will be best to overcome symptom management challenges. Finally, we have limited knowledge of phenotypic characterization and biomarkers related to symptoms and symptom clusters. Purpose: This exploratory mixed methods study will examine the feasibility of using mHealth technologies to facilitate symptom management for PBMT patients and caregivers. It will also explore the feasibility of using real-time data to identify phenotypical expressions and to discover potential biomarkers in order to create interventions to better manage, eliminate, or prevent PBMT symptoms and thereby promote better health outcomes. Methods: Patients/caregivers will be asked to monitor and track relevant clinical data over 3 months using a wearable tracking device and a mobile health application (app). Data generated from the devices will be visualized as trajectories that will help us to understand symptom expressions and phenotypical characteristics. Patients and caregivers will be interviewed at baseline and months one and three of the study to discuss their challenges and successes using mobile health to monitor and manage symptoms. This study will focus on a high-risk population that may benefit substantially from the use of mobile technologies. The minimally intensive, potentially cost-effective technology used in this study will decrease the patient/caregiver burden for tracking and monitoring data.