This proposal requests continued support for an NINR-funded study, Feeding Behaviors and Energy Balance in Infants with Congenital Heart Disease (R01 NR002093). Approximately 32,000 babies are born with congenital heart disease (CHD) each year in the US and 2.3 of every 1000 live births will require some form of intervention before age one or the infant will die. The diagnosis of complex CHD, requiring associated palliative or corrective surgery, is one of the most stressful times parents will experience. The increased stress of caring for these infants is unrelenting, lasting weeks, months, and often years, placing parents at risk for developing Post Traumatic Stress Disorder (PTSD) as well as a drastic decrease in quality of life (QOL). We will conduct a randomized controlled trial (RCT) of the Telehealth daily home monitoring model of care for 250 infants with complex CHD from two major pediatric cardiac centers. The successful implementation of this Telehealth daily home monitoring intervention has the potential to radically change the way home monitoring programs are delivered to any infant or child with life threatening illnesses. The primary aim is to compare the effects of a Telehealth daily home monitoring intervention to discharge standard of care for infants following neonatal cardiac surgery. We hypothesize that when compared to standard of care, a Telehealth daily home monitoring intervention will improve outcomes for infants and their families with complex CHD by: a) improving: parent outcomes (decreased parental stress, improved QOL, decreased social isolation, decreased symptoms of PTSD);b) improving infant stability: weight gain, feeding behaviors, and ability to adhere to discharge cardiology visit schedule;and c) decrease health care resource utilization (lower numbers of re-hospitalizations and re-hospitalization days, decreased emergency department use, and acute care physician office use) and no increase in cost.
The proposed intervention will use parent education, daily communication and a clinical information system that harnesses the power of speech and video technology to create a virtual home monitoring system using any telephone in combination with a web-based educational system. The results of this study will mostly benefit society by helping to improve the support provided to parents of infants with complex congenital heart disease. Improved parental support will improve infant outcomes and decrease parental stress.
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