Transitional Telehealth Home Care: REACH

描述(由申请人提供)：本提案请求继续支持NINR资助的一项研究，即先天性心脏病婴儿的喂养行为和能量平衡(R01NR002093)。在美国，每年大约有3.2万名婴儿出生时患有先天性心脏病(CHD)，每1000名活产中有2.3名需要某种形式的干预才能达到一岁，否则婴儿就会死亡。复杂的CHD的诊断需要相关的姑息或矫正手术，这是父母面临的最大压力之一。照顾这些婴儿增加的压力是无情的，持续数周、数月甚至数年，使父母面临患上创伤后应激障碍(PTSD)以及生活质量(QOL)急剧下降的风险。我们将对来自两个主要儿科心脏中心的250名患有复杂冠心病的婴儿进行TeleHealth每日家庭监测模式的随机对照试验(RCT)。这项TeleHealth每日家庭监测干预措施的成功实施，有可能从根本上改变向任何患有危及生命的疾病的婴儿或儿童提供家庭监测计划的方式。主要目的是比较每日远程健康家庭监测干预措施对新生儿心脏手术后婴儿出院护理标准的影响。我们假设，与标准护理相比，TeleHealth每日家庭监测干预将通过以下方式改善患有复杂CHD的婴儿及其家人的结局：a)改善父母结局(减少父母压力、改善生活质量、减少社交隔离、减少创伤后应激障碍症状)；b)改善婴儿稳定性：体重增加、喂养行为和遵守出院心脏病就诊时间表的能力；以及c)减少医疗资源利用(再次住院和再次住院天数减少，急诊科使用减少，急性护理医生办公室使用减少)，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.