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.
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