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（发短信促进青少年健康联络和慢性病管理），涉及广泛的挑战领域（06）使能技术和具体的挑战主题，06- MD-101* 开发远程保健工具，通过低成本、移动的和无线技术促进健康并将高危青年与卫生系统联系起来。青少年保健服务委员会、国家研究理事会和医学研究所将患有慢性病的青少年确定为“最脆弱”的青少年群体之一。迄今为止的研究表明，患有慢性病的青少年的心理健康和心理社会结果较差，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%的青少年至少有一种慢性疾病或残疾。据估计，五分之一的青少年得不到他们所需的医疗保健，与健康的同龄人相比，残疾青少年面临更大的医疗保健风险。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联络和慢性病管理）的初步疗效，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医疗保健参与方面的健康相关自我效能。TAHLC干预措施将专门针对目标人群，纳入慢性病患者的输入和反馈，并建立在研究团队在青少年和慢性病成人中的先前成功工作的基础上。我们假设，TAHLC将促进更大的变化，在健康相关的自我效能感，疾病自我管理的度量，相比，通常的护理控制。我们还假设，与常规护理对照相比，TAHLC将增加患者进行的医疗保健沟通，这是一种健康沟通和参与的衡量标准。我们的主要目的是开发和定制一种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的自我效能和患者进行的医疗保健沟通的影响。次要目的是确定TAHLC与常规护理相比对健康知识、依从性、自尊和生活质量的影响，以及8个月时抑郁症的减少，以及参与受试者、其家属和参与临床工作人员对干预的可用性和可接受性。干预措施的测试将通过一项小型、试点、随机、对照试验（RCT）在80名患有慢性疾病的青少年（14-20岁）中进行。RCT将比较TAHLC与非干预性常规治疗。将在基线、4个月和8个月时进行疾病自我管理、医疗保健沟通、医疗保健利用、心理社会和生活质量测量。目前尚不清楚为这一高危人群开发的移动的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需求。本研究旨在填补这一空白。我们将开发一种基于短信技术的干预措施TAHLC（短信改善青少年健康联络和慢性病管理），以增加患有慢性病的青少年的疾病自我管理和医疗保健参与。然后，我们将在青少年慢性病患者中进行为期8个月的随机对照试验，评估干预措施。该项目将是第一个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.