An mHealth Strategy to Improve Medication Adherence in Adolescents with Sickle Cell Disease

提高镰状细胞病青少年用药依从性的移动医疗策略

• 批准号: 10112300
• 负责人: Sherif Mohamed Badawy
• 金额: $ 16.85万
• 依托单位: LURIE CHILDREN'S HOSPITAL OF CHICAGO
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-03-01 至 2025-02-28
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10112300
• 关键词: Address; Adherence; Adolescent; Adolescent and Young Adult; Adopted; Affect; African American; Age; Age-Months; American; Award; Behavior Therapy; Behavioral; Biological Markers; Biometry; Cellular Phone; Chronic; Chronic Disease; Clinical Trials; Collaborations; Cross-Sectional Studies; Data; Development; Development Plans; Disease; Education; Environment; Evaluation; Fatigue; Foundations; Future; Genetic Diseases; Goals; Guidelines; Habits; Health; Health Care Costs; Healthcare; Individual; Intervention; Intervention Studies; K-Series Research Career Programs; Laboratories; Lead; Live Birth; Measures; Mental Depression; Mentors; Minority Groups; Morbidity - disease rate; National Heart, Lung, and Blood Institute; Organ; Outcome; Outcomes and Health Services Research; Pain; Patient Outcomes Assessments; Patients; Pediatric Hematologist; Pediatric Hospitals; Perception; Pharmaceutical Preparations; Physicians; Population; Prospective cohort study; Psychological Factors; Pulmonary Heart Disease; Randomized Controlled Trials; Research; Research Infrastructure; Research Personnel; Research Project Grants; Resources; Review Literature; Scientist; Self Determination; Self Management; Sickle Cell Anemia; Social isolation; Stroke; Structure; Surveys; Tablets; Techniques; Text Messaging; Theory of Change; Training; United States Food and Drug Administration; Universities; Variant; Work; acceptability and feasibility; base; behavior change; behavioral adherence; behavioral clinical trial; behavioral health intervention; career; career development; clinical outcome assessment; clinical practice; cost effectiveness; design; evidence base; experience; feasibility testing; health care service utilization; health related quality of life; hydroxyurea; improved; interest; mHealth; medical schools; medication compliance; mobile application; mobile computing; mortality; patient oriented; patient-level barriers; pediatric department; prototype; public health relevance; skills; smartphone Application; theories; therapy development; usability; user centered design

Project Summary (Abstract) Research: Sickle cell disease (SCD) is the most common genetic disorder in the US, affecting about 100,000 Americans, and about 1 in 400 African American live births, incurring annual health care costs of $335 million. SCD complications lead to significant declines in health-related quality of life (HRQOL), culminating in early mortality, particularly among adolescents and young adults (AYA). Hydroxyurea (HU) reduces morbidity and mortality, improves HRQOL and lowers healthcare utilization. Low HU adherence is common and has been associated with worse health outcomes, poor HRQOL and increased healthcare utilization. Our preliminary data suggested that low HU adherence was associated with worse HRQOL scores. However, the longitudinal relationship between HU adherence and HRQOL remains unclear. Our pilot data also suggest that AYA with SCD are interested in using a multi-function SCD-app to facilitate disease self-management and to improve HU adherence, which we were able to develop a prototype for (HU-Go app). The specific aims for Dr. Badawy's research project are to: (1) Determine the longitudinal relationship of HU adherence behavior to health-related quality of life, barriers to adherence and habit formation among AYA with SCD; (2) Refine the design of HU-Go using an iterative user-centered design approach and determine the usability and usefulness of the refined HU- Go app; and (3) Test the feasibility and acceptability of the HU-Go app as an mHealth behavioral intervention to improve HU adherence among AYA with SCD. Candidate: Dr. Badawy is a pediatric hematologist. The support of this career development award will help Dr. Badawy become an independent physician-investigator with the training and experience necessary to improve medication adherence behavior and HRQOL in adolescents with SCD using mHealth behavioral interventions. Dr. Badawy will use this award to build on his existing foundation in health services and outcomes research to develop expertise in: (1) mHealth behavioral interventions research and the application of user-centered design principles; (2) developmental and behavior change theory as it relates to medication adherence with particular focus on AYA; (3) use of mobile technologies for clinical outcomes assessment, including, HRQOL; (4) advanced biostatistics; and (5) behavioral clinical trials for mHealth-based interventions. These skills will enable Dr. Badawy to establish an independent, programmatic line of research and build a transdisciplinary research team to integrate behavioral and technological approaches to improve health outcomes and HRQOL in adolescents with SCD. Dr. Badawy will achieve these career objectives through a 5-year career development plan that involves structured didactics, patient-oriented experiential research, and intensive mentoring. Environment: The exceptional institutional environment will be critical to support Dr. Badawy's career development, including the (1) Dedicated resources from the Department of Pediatrics, (2) Strong research infrastructure at Northwestern University (NU), and (3) Established collaborations between Lurie Children's Hospital and NU Feinberg School of Medicine.

项目摘要（摘要） 研究：镰状细胞病（SCD）是美国最常见的遗传疾病，影响约100,000 美国人，大约有400名非裔美国人活产，每年的医疗保健费用为3.35亿美元。 SCD并发症会导致健康相关的生活质量显着下降（HRQOL），并在早期达到顶峰 死亡率，特别是在青少年和年轻人中（AYA）。羟基脲（HU）降低了发病率和 死亡率，改善HRQOL并降低医疗保健利用。低hu依从性很普遍，已经 与健康结果较差，HRQOL差和医疗保健利用的增加相关。我们的初步 数据表明，HU依从性较低与HRQOL得分较差有关。但是，纵向 HU依从性与HRQOL之间的关系尚不清楚。我们的飞行员数据还表明 SCD有兴趣使用多功能SCD应用程序来促进疾病自我管理并改善HU 依从性，我们能够为（Hu-Go App）开发原型。 Badawy博士的具体目的 研究项目将要：（1）确定HU依从性行为与健康相关的纵向关系 与SCD的AYA之间的生活质量，遵守性的障碍和习惯形成； （2）完善Hu-Go的设计 使用以用户为中心的迭代设计方法，并确定精制的Hu-的可用性和实用性 去应用； （3）测试HU-GO应用程序作为MHealth行为干预的可行性和可接受性 为了提高AYA与SCD的遵守。候选人：Badawy博士是一名儿科血液学家。这 该职业发展奖的支持将帮助Badawy博士成为独立的医师评估员 借助改善药物依从性行为和HRQOL所需的培训和经验 使用MHealth行为干预措施的SCD青少年。 Badawy博士将使用这个奖项来建立他的 卫生服务和成果研究的现有基础，以发展专业知识：（1）MHealth行为 干预研究和以用户为中心的设计原则的应用； （2）发展和行为 与药物依从性有关的变化理论特别关注AYA； （3）使用移动技术 用于临床结果评估，包括HRQOL； （4）高级生物统计学； （5）行为临床 基于MHealth的干预措施的试验。这些技能将使Badawy博士能够建立一个独立的， 编程研究线并建立一个跨学科研究团队，以整合行为和 SCD的青少年改善健康结果和HRQOL的技术方法。 Badawy Will博士 通过一项为期5年的职业发展计划实现这些职业目标，该计划涉及结构化的教学法， 面向患者的体验研究和密集指导。环境：杰出的机构 环境对于支持Badawy博士的职业发展至关重要，包括（1）专用资源 来自儿科系（2）西北大学（NU）的强大研究基础设施和（3） Lurie儿童医院和Nu Feinberg医学院之间建立了合作。