Transitional Telehealth Home Care: REACH

描述（由申请人提供）：本提案请求继续支持nnr资助的一项研究，先天性心脏病婴儿的喂养行为和能量平衡（R01 NR002093）。在美国，每年大约有32000名婴儿出生时患有先天性心脏病（CHD），每1000个活产婴儿中就有2.3个在1岁之前需要某种形式的干预，否则婴儿将死亡。复杂冠心病的诊断，需要相关的姑息治疗或矫正手术，是父母最紧张的时刻之一。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。我们将进行一项随机对照试验（RCT），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远程医疗每日家庭监测模型的护理。这种远程保健每日家庭监测干预措施的成功实施有可能从根本上改变家庭监测方案向任何患有危及生命疾病的婴儿或儿童提供的方式。主要目的是比较远程保健每日家庭监测干预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，远程医疗每日家庭监测干预将通过以下方式改善患有复杂冠心病的婴儿及其家庭的结局：a)改善父母结局（减少父母压力，改善生活质量，减少社会孤立，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，以及坚持出院心脏科就诊计划的能力；c)降低卫生保健资源利用率（再住院次数和再住院天数减少，急诊科使用率和急症护理医师办公室使用率减少），但成本没有增加。

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. PUBLIC HEALTH RELEVANCE: 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.