TAHLC:Texting to promote Adolescent Health Liaisons & Chronic disease Management

描述(由申请人提供)： 该应用程序名为TAHLC(短信促进青少年健康联系和慢性病管理)，涉及广泛的挑战领域(06)使能技术和特定挑战主题，06-MD-101*开发远程医疗工具，通过低成本、移动和无线技术将高危青少年连接到医疗系统。青少年保健服务委员会、国家研究理事会和医学研究所已将患有慢性病的青少年确定为“最脆弱”的青少年群体之一。到目前为止的研究表明，患有慢性病的青少年的心理健康和心理社会结果很差，并对功能能力、精神健康和发展里程碑成就产生负面影响。目前，超过30%的青少年至少患有一种慢性病或残疾。据估计，每5名青少年中就有1名得不到所需的医疗保健，与健康的同龄人相比，残疾青少年获得上述医疗保健的风险更大。我们将开发和测试基于技术的干预TAHLC(短信改善青少年健康关系和慢性病管理)的初步效果，以提高慢性病青少年在准备过渡到成人护理时在疾病管理和保健参与方面的健康相关自我效能。TAHLC干预措施将专门为目标人群量身定做，纳入慢性病患者的意见和反馈，并建立在研究小组先前在青少年和患有慢性病的成年人中所做的成功工作的基础上。我们假设，与通常的护理对照相比，TAHLC将促进与健康相关的自我效能的更大变化，健康自我效能是衡量疾病自我管理的指标。我们还假设，与通常的护理控制相比，TAHLC将增加患者引导的医疗沟通，这是一种健康沟通和参与的衡量标准。我们的主要目标是开发和定制专门针对青少年慢性病患者(TAHLC)的慢性病管理行为干预措施，并确定与常规护理相比，这种干预措施对健康相关自我效能和患者进行的医疗沟通的影响。第二个目标是确定TAHLC和常规护理在8个月后对健康知识、依从性、自尊和生活质量的增加以及抑郁的减少的影响，以及参与干预的受试者、他们的家人和参与的临床工作人员的可用性和可接受性。干预措施的测试将通过在80名患有慢性病的青少年(14-20岁)中进行的小型试点随机对照试验(RCT)进行。RCT将把TAHLC与非干预性常规护理进行比较。疾病自我管理、医疗保健沟通、医疗保健利用、心理社会和生活质量测量将在基线、4个月和8个月进行。尚不清楚为这一高危人群开发的移动技术方法是否足以满足患有慢性病的青少年的独特医疗和心理社会需要。这项研究旨在填补这一空白。我们将开发基于短信技术的干预TAHLC(短信改善青少年健康关系和慢性病管理)，以提高患有慢性病的青少年的疾病自我管理和保健参与度。然后，我们将在一项为期8个月的随机对照试验中对患有慢性病的青少年进行干预评估。该项目将是首批解决基本研究问题的项目之一，即需要什么来改善疾病自我管理，以及医疗保健系统如何更好地吸引受慢性病影响的青年。

DESCRIPTION (provided by applicant): This application, entitled TAHLC (Texting to promote Adolescent Health Liaisons and Chronic disease management), addresses broad Challenge Area (06) Enabling Technologies and specific Challenge Topic, 06- MD-101* Development of Telehealth Tools to Promote Health and Connect At-Risk Youth to the Health System via Low-Cost, Mobile, and Wireless Technologies. The Committee on Adolescent Health Care Services, the National Research Council, and the Institute of Medicine have identified adolescents with chronic disease as one of the "most vulnerable" groups of adolescents. Studies to date demonstrate poor mental health and psychosocial outcomes among adolescents with chronic disease as well as negative effects on functional ability, psychiatric health and developmental milestone achievement. Currently, over 30% of adolescents have at least one chronic illness or disability. It is estimated that 1 in 5 adolescents do not get the healthcare they need, and adolescents with disabilities are at greater risk of foregoing health care as compared to well peers. We will develop and test the preliminary efficacy of a technology-based intervention TAHLC (Texting to improve Adolescent Health Liaisons and Chronic disease management) to increase health-related self-efficacy in regards to disease management and healthcare engagement among adolescents with chronic disease as they prepare for their transition to adult care. The TAHLC intervention will be tailored specifically for the target population, incorporate chronic disease patient input and feedback, and build upon prior successful work by the research team among adolescent youth and adults with chronic disease. We hypothesize that TAHLC will promote greater change in health-related self-efficacy, a metric of disease self-management, as compared to usual care controls. We also hypothesize that TAHLC will increase patient-conducted healthcare communications, a measure of health communication and engagement, as compared to usual care controls. Our primary aim is to develop and tailor a chronic disease management behavioral intervention specifically for adolescent patients with chronic disease (TAHLC) and to determine the impact of this intervention on health-related self-efficacy and patient-conducted healthcare communications as compared to usual care. Secondary aims are to determine the impact of TAHLC vs. usual care on gains in health knowledge, adherence, self-esteem, and quality of life and reduction in depression at 8 months, and usability and acceptability of the intervention by participating subjects, their families, and participating clinical staff. Testing of the intervention will be performed via a small, pilot, randomized, controlled trial (RCT) among 80 adolescent youth (14-20 years) with chronic disease. The RCT will compare TAHLC to non-intervention usual care. Disease self-management, healthcare communications, healthcare utilization, psychosocial, and quality of life measures will be conducted at baseline, 4 and 8 months. It is not yet known whether mobile technology approaches developed for this at-risk population will be sufficient to address the unique medical and psychosocial needs of adolescents with chronic disease. This study aims to fill this gap. We will develop a texting technology-based intervention TAHLC (Texting to improve Adolescent Health Liaisons and Chronic disease management) to increase disease self-management and healthcare engagement among adolescents with chronic disease. We will then evaluate the intervention in an 8-month randomized controlled trial among adolescents with chronic disease. This project will be among the first to address the essential research question of what is needed to improve disease self-management among and how healthcare systems can better engage youth affected by chronic disease.