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

儿科血液和骨髓移植护理中技术介导的症状管理

• 批准号: 9609100
• 负责人: Jacqueline Vaughn
• 金额: $ 4.45万
• 依托单位: DUKE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-09-01 至 2021-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9609100
• 关键词: Accelerometer; Address; Algorithms; Biological Markers; Blood; Blood Glucose; Body Weight decreased; Bone Marrow Transplantation; Caregiver Burden; Caregivers; Caring; Characteristics; Child; Childhood; Chronic; Clinical Data; Data; Data Display; Data Quality; Development; Devices; Diabetes Mellitus; Discipline of Nursing; Disease; Distress; Early Intervention; Fatigue; Feedback; Fostering; Foundations; Goals; Health; Health Technology; Heart Rate; Hour; Imagery; Individual; Intervention; Interview; Knowledge; Lead; Longitudinal Studies; Malignant - descriptor; Marrow; Mediating; Medical; Methods; Mobile Health Application; Monitor; National Institute of Nursing Research; Nature; Nausea and Vomiting; Non-Malignant; Notification; Obesity; Outcome; Pain; Parents; Patient-Focused Outcomes; Patients; Pattern; Perception; Phenotype; Physical activity; Population; Precision Health; Prevention; Process; Provider; Quality of life; Recovery; Research; Research Personnel; Science; Self Management; Severities; Sickle Cell Anemia; Sleep; Sleep disturbances; Suggestion; Surveys; Symptoms; Technology; Time; Transplant Recipients; Transplantation; Visual; Walking; biomarker identification; clinically relevant; cost effective; dashboard; data warehouse; experience; health data; heart rate monitor; high risk population; improved; improved outcome; innovation; interest; mHealth; medication compliance; mobile application; mobile computing; personalized care; potential biomarker; prevent; public health relevance; reduce symptoms; sleep quality; success; symptom cluster; symptom management; symptom science; symptom self management; symptom treatment; symptomatic improvement; therapy development; usability

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.

摘要 意义：需要血液和骨髓移植治疗恶性和非恶性疾病的儿童， 医学上脆弱并且非常容易出现严重的痛苦症状，例如严重的疲劳，疼痛， 恶心呕吐和睡眠障碍患者和父母的症状管理是成功治疗的关键 消除、预防或治疗症状。使用有意义的实时数据将有助于症状 为患者和家长提供更好的管理，帮助他们更好地了解症状特征， 症状群，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。 新兴的移动的健康（mHealth）技术可以通过首先捕获 表型特征和生物标志物数据，然后直接向护理人员提供实时反馈， 患者和供应商。此外，这些技术还可以加速评估和监测 症状导致早期干预，持续管理和/或预防，从而改善 结果。然而，目前，很少有长期的研究已经进行评估的整合， 移动的技术应用于儿科血液和骨髓移植（PBMT）患者的症状管理。 我们对如何支持患者和护理人员使用来自移动的技术的数据， 实时症状管理此外，我们也不知道究竟哪些策略将是最好的克服 症状管理挑战。最后，我们对表型特征的了解有限， 与症状和症状群相关的生物标志物。 目的：这项探索性混合方法研究将探讨使用移动医疗技术的可行性， 促进PBMT患者和护理人员的症状管理。研究亦会探讨采用 实时数据来识别表型表达并发现潜在的生物标志物， 干预措施，以更好地管理，消除或预防PBMT症状，从而促进更好的健康 结果。 方法：将要求患者/护理人员在3个月内使用 可穿戴跟踪设备和移动的健康应用（app）。设备生成的数据将 可视化为轨迹，这将有助于我们理解症状表达和表型 特色患者和护理人员将在基线和研究的第一个月和第三个月接受采访 讨论他们在使用移动的健康监测和管理症状方面的挑战和成功。本研究 将侧重于可能从使用移动的技术中获益的高危人群。的 本研究中使用的最低强度、潜在成本效益高的技术将减少患者/护理人员 跟踪和监控数据的负担。