Remotely Delivered Cardiac Rehabilitation for Adolescents with Congenital Heart Disease

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PROJECT SUMMARY/ABSTRACT Adolescents with congenital heart disease [CHD], including repair of tetralogy of Fallot [TOF], dextro-transposi- tion of the great vessels [d-TGA], or functionally univentricular heart physiology [Fontan], have lower cardiorespir- atory fitness [FIT] compared with healthy peers. FIT is a well-established predictor of morbidity, quality of life [QOL], and heart transplantation and is among the strongest predictors of mortality in this population. However, adolescents with CHD have significantly lower FIT when compared to cardio-typical peers, due to abnormal hemodynamics as well as low durations and intensities of physical activity [PA] and exercise. Pediatric cardiac rehabilitation [CR] programs which prescribe aerobic and resistance exercise over 12-wks. have demonstrated improvements in FIT for patients with CHD which persist months after completion of the program. Unfortunately, few hospitals/clinics offer CR programming for children and adolescents due to the financial costs of building and maintaining a CR facility, as well as the travel cost, time requirement, and burden for parents/caregivers to transport their child to/from a hospital for CR exercise sessions multiple times per week. In-home CR reduces barriers related to patient access and the financial burden for hospitals, though data supporting the effectiveness of in-home CR for youth is limited. The use of group video conferencing technology via tablet computer repre- sents a novel and potentially transformational strategy for delivering real-time, live, supervised CR to groups of adolescents with CHD in their homes. The goal of this K23 research plan is to evaluate the effectiveness of video conferencing for the delivery of real-time CR to groups of adolescents with CHD in their homes. We propose a 12-wk. randomized-controlled clinical trial assigning 74 adolescents [12-19 years old] with 1 of 3 CHD diagnoses [Fontan, TOF, or d-TGA] to Remote CR [RCR] [in-home, live, remote group exercise, 3-45-min sessions/week.] or Active control [in-home, self-directed exercise]. Our aims will assess the effectiveness of the RCR approach by comparing between-group changes [0-12 weeks] in: FIT, cardiac function, lean body mass, and frailty. Ex- ploratory aims will assess between group differences [0-12 weeks] in physical function, QOL, PA self-efficacy, and will evaluate the impact of demographic characteristics on program participation and satisfaction, and daily PA. We hypothesize the RCR intervention will elicit greater improvements in each outcome compared to the control group. The PI’s short term career development goal of enhancing knowledge, skills, and experiences in clinical trials research, CHD physiology, and implementation and dissemination [I&D] outcomes research in youth with CHD will be accomplished through a multidisciplinary team of mentors, formal programming/coursework, independent study, and scientific meetings. Career development training and experiences and data from the research plan will prepare the PI to accomplish his long-term career goals to 1] establish an independently funded research program conducting clinical trials to evaluate the impact of exercise, FIT on physical and psy- chosocial function in youth with CHD; and 2] I&D of CR programs across multiple sites.