Transitional Telehealth Home Care: REACH

描述（由申请人提供）：本提案要求继续支持NINR资助的研究，先天性心脏病婴儿的喂养行为和能量平衡（R 01 NR 002093）。在美国，每年约有32，000名婴儿出生时患有先天性心脏病（CHD），每1000名活产婴儿中有2.3名需要在一岁之前进行某种形式的干预，否则婴儿将死亡。复杂CHD的诊断，需要相关的姑息或矫正手术，是父母将经历的最紧张的时期之一。照顾这些婴儿的压力不断增加，持续数周，数月甚至数年，使父母面临患创伤后应激障碍（PTSD）的风险，以及生活质量（QOL）的急剧下降。我们将对来自两个主要儿科心脏中心的250名患有复杂CHD的婴儿进行远程健康每日家庭监测护理模式的随机对照试验（RCT）。成功实施这种远程保健每日家庭监测干预措施有可能从根本上改变向任何患有危及生命疾病的婴儿或儿童提供家庭监测方案的方式。本研究的主要目的是比较远程健康每日家庭监护干预与新生儿心脏手术后出院护理标准的效果。我们假设，与标准护理相比，远程健康每日家庭监测干预将通过以下方式改善患有复杂CHD的婴儿及其家庭的结局：a）改善：（减少父母压力，改善QOL，减少社会隔离，减少PTSD症状）; B）改善婴儿稳定性：体重增加，喂养行为，和坚持出院心脏病学访视时间表的能力;以及c）减少卫生保健资源利用（减少再住院次数和再住院天数、减少急诊室使用和急性护理医生办公室使用）并且不增加成本。

DESCRIPTION (provided by applicant): 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.