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

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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.