Background Pediatric heart transplant recipients have high‐risk cardiovascular profiles that can affect their long‐term outcomes; however, promoting exercise and healthy diet has not been a major focus in the field. The objective of this study was to test the feasibility and impact of a supervised exercise and diet intervention delivered via live videoconferencing in this population. Methods and Results Patients 8 to 19 years of age at least 1 year post heart transplantation were enrolled. The 12‐ to 16‐week intervention phase included live video–supervised exercise (×3/week) and nutrition (×1/week) sessions. The 12‐ to 16‐week maintenance phase included ×1/week live video–supervised exercise and nutrition sessions and ×2/week self‐directed exercise sessions. Cardiac, vascular, nutritional, and functional health indices were obtained at baseline, after intervention, and after maintenance. Fourteen patients (median age, 15.2; interquartile range, 14.3–16.7 years) at a median of 3.3 (interquartile range, 1.5–9.7) years after heart transplant completed the intervention. Patients attended 89.6±11% of exercise and 88.4±10% of nutrition sessions during the intervention and 93.4±11% of exercise and 92.3±11% of nutrition sessions during maintenance. After intervention, body mass index percentile (median, −27%; P =0.02), endothelial function (median, +0.29; P =0.04), maximum oxygen consumption (median, +2 mL/kg per minute; P =0.002). Functional Movement Screening total score (median, +2.5; P =0.002) and daily consumption of saturated fat (median, −6 g; P =0.02) improved significantly. After maintenance, improvements in maximum oxygen consumption (median, +3.2 mL/kg per minute; P =0.02) and Functional Movement Screening total score (median, +5; P =0.002) were sustained. Conclusions In pediatric heart transplant recipients, a live video–supervised exercise and diet intervention is feasible. Our results demonstrate excellent adherence with significant improvements in cardiovascular and functional health. Clinical Trial Registration URL : http://www.clinicaltrials.gov . Unique identifier: NCT 02519946.

BackgroundPersonal health records (PHR) may improve patients' health by providing access to and context for health information. Among patients receiving care at a safety-net HIV/AIDS clinic, we examined the hypothesis that a mental health (MH) or substance use (SU) condition represents a barrier to engagement with web-based health information, as measured by consent to participate in a trial that provided access to personal (PHR) or general (non-PHR) health information portals and by completion of baseline study surveys posted there.MethodsParticipants were individually trained to access and navigate individualized online accounts and to complete study surveys. In response to need, during accrual months 4 to 12 we enhanced participant training to encourage survey completion with the help of staff. Using logistic regression models, we estimated odds ratios for study participation and for survey completion by combined MH/SU status, adjusted for levels of computer competency, on-study training, and demographics.ResultsAmong 2,871 clinic patients, 70% had MH/SU conditions, with depression (38%) and methamphetamine use (17%) most commonly documented. Middle-aged patients and those with a MH/SU condition were over-represented among study participants (N = 338). Survey completion was statistically independent of MH/SU status (OR, 1.85 [95% CI, 0.93–3.66]) but tended to be higher among those with MH/SU conditions. Completion rates were low among beginner computer users, regardless of training level (<50%), but adequate among advanced users (>70%).ConclusionsAmong patients attending a safety-net clinic, MH/SU conditions were not barriers to engagement with web-based health information. Instead, level of computer competency was useful for identifying individuals requiring substantial computer training in order to fully participate in the study. Intensive on-study training was insufficient to enable beginner computer users to complete study surveys.

Death in children after Htx often occurs in the inpatient setting, particularly the intensive care unit. Medical interventions, including attempted resuscitation, are common at the end of life. Given the difficulty in anticipating life-threatening events, earlier discussions with patients regarding end-of-life wishes are appropriate, even in those with normal graft function.

Background: Pediatric heart transplant (PedHtx) patients have increased cardiovascular risk profiles that affect their long-term outcomes and quality of life. We designed a 12-to 16-week diet and exercise intervention delivered via live video conferencing to improve cardiovascular health. Our methodology and baseline assessment of the first 13 enrolled patients are reported. Methods: Inclusion criteria are as follows: (a) 8-19 years old; (b) heart transplant >12 months; (c) ability to fast overnight; (d) cardiac clearance by cardiologist; and (e) presence of an adult at home during exercise sessions for patients <14 years old. Exclusion criteria are as follows: (a) acute illness; (b) latex allergy; (c) transplant rejection <3 months ago; and (d) multi-organ transplantation. The intervention consists of one diet and three exercise sessions weekly via live video conferencing. Study visits are conducted at baseline, intervention completion, and end of maintenance period. Results: A total of 13 participants (15.2 [2.3] years) have been enrolled. Median percent-predicted VO 2 max was 56.8 [20.7]% (10 patients <70%). Ten patients had abnormal endothelial function (reactive hyperemia index <1.9; 1.4 [0.325]) and 11 patients had stiff arteries (pulse wave velocity ≧5.5 m/s for 15-19 years, ≧4.5 m/s for 8-14 years; 5.6 [0.7] m/s). Patients had suboptimal diets (saturated fat: 22.7 [23.8] g/d, sodium: 2771 [1557] mg/d) and were sedentary at a median of 67.5 [13.8]% of their time. Conclusions: Baseline assessment confirms that PedHtx patients have abnormal cardiac, vascular, and functional health indices, poor dietary habits, and are sedentary.These results support the rationale to test the feasibility and impact of a non-pharmacologic lifestyle intervention in this patient population.

Methods: Retrospective review of all deaths occurring in pHtx patients between 3/14/2009-7/9/2015 at a single center. The causes, location, and level of support at the time of death were analyzed, as was the incidence of sudden cardiac arrest occurring out of hospital or in the emergency department (ED). Deaths that occurred prior to transplant hospitalization discharge were excluded. Results: Twenty-two patient deaths were analyzed. The median age of death was 12 (IQR 6,18) years. 18/22 (82%) died of cardiac causes, 3 (14%) died of infection, and 1 (5%) died of primary pulmonary disease. Of those who died of cardiac causes, 12 (67%) had no evidence of graft dysfunction or coronary vasculopathy at their most recent assessments, which occurred a median of 54 (IQR 24, 119) days before death. Fifteen (68%) of patients died in an ICU, 17 (77%) were intubated, and 8 (36%) died on mechanical support (VAD or ECMO). 11/22 (50%) patients suffered sudden cardiac arrest at home or in the ED prior to hospital admission. Conclusion: Most deaths following pHtx occur in the ICU while receiving advanced life-sustaining therapies. This may be due in part to the rapid evolution of life-threatening cardiac complications that manifest despite little evidence of preceding cardiac disease and often result in sudden death or outof-hospital/ED resuscitations. As a result, families may be left unprepared for end-of-life decision-making. These findings suggest the need for advanced care directives and ongoing discussions regarding resuscitative wishes for all pHtx patients, even in the absence of graft dysfunction.

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PurposeWe sought to determine whether the presence of a systemic SA with potential complicating factors affects waitlist and post–HT outcomes in pediatric patients.MethodsThis is a single‐center retrospective review of pediatric patients listed for HT between January 1, 2009, and July 1, 2018. Patients were selected based on the presence of any underlying syndromes, which included chromosomal anomalies, skeletal myopathies, connective tissue disorders, mitochondrial disease,and other systemic disorders. Waitlist and post–HT outcomes were compared to those without SA.ResultsA total of 243 patients were listed for HT, of which 21 (9%) patients had associated SA. Of those, 16 (76%) survived to transplant, 3 (14%) died while on the waitlist, 1 (5%) improved and was removed from the waitlist, and 1 (5%) patient is currently listed. Waitlist survival was not different between those with/without an associated syndrome (P = 1.0). Among those who survived to HT, there was no difference in listing days (70 vs 90, P = .8), survival to hospital discharge [14 (93%) vs 150 (95%), P = .6], post‐HT intubation days (2 vs 2 days, P = .6), or post‐HT hospital length of stay (18 vs 18 days, P = .8). Overall survival during the study period post‐HT was not different between groups (P = .8).ConclusionA SA was present in 9% of pediatric patients wait‐listed for HT, but was not associated with an increased waitlist mortality or post‐HT hospital morbidity or long‐term survival. For several anomalies, HT is safe and feasible.

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