The Paradigm Shift Toward Surgical Intervention for Neonates With Hypoplastic Left Heart Syndrome

Wernovsky, Gil

doi:10.1001/archpedi.162.9.849

Cited by 64 publications

(40 citation statements)

References 42 publications

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“…1,2 As the outcomes of the staged procedures improve, an increasing number of children with complex heart conditions have survived into adulthood. [2][3][4][5] More patients are now undergoing staged procedures [6][7][8] but the trend in long-term inpatient cost and care needs for this population are unclear. Using hospital billing data associated with encounters, Keren et al (2012) have shown that the cumulative costs of the 10 most expensive pediatric conditions in the US accounted for approximately one third of the standardized costs for all pediatric visits to hospital, and single-ventricle congenital heart defects such as hypoplastic left heart syndrome (HLHS) ranked 7 th on the list.…”

Section: Accepted Manuscriptmentioning

confidence: 99%

Hospital Inpatient Costs for Single Ventricle Patients Surviving the Fontan Procedure

Huang

Schilling

Dalziel

et al. 2017

The American Journal of Cardiology

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We estimated the inpatient resource use for a Fontan patient from birth to adulthood and explored factors that might induce cost differences (2014 US dollar). Inpatient costing records from four hospitals with greatest numbers of Fontan patients in Australia and New Zealand were linked with the Fontan registry database. Inpatient records between July 1995 and September 2014 for 420 Fontan patients were linked, and the most frequent primary diagnoses were hypoplastic left heart syndrome (HLHS) (20.7%), tricuspid atresia (19.7%), and double inlet left ventricle (17.1%). The mean hospital cost for a Fontan patient from birth to 18 years of age was estimated to be $390,601 (95% confidence interval [CI] $264,703 to $516,499), corresponding to 164 (95% CI 98 to 231) inpatient days. The cost incurred from birth through to Fontan completion (the staged procedures period) was $219,482 (95% CI $202,410 to $236,553) and the cost thereafter over 15 years was $146,820 (95% CI $44,409 to $249,231), corresponding to 82 (95% CI 72 to 92) and 65 (95% CI 18 to 112) inpatient days respectively. Costs were higher in male and HLHS patients in the staged procedures period (P<0.001). Having fenestration was associated with higher costs in the staged procedures period (P<0.001) and lower cost post Fontan over 15 years (P=0.66). In conclusion, patients with single-ventricle congenital heart disease continue to demand considerable inpatient resources after the staged procedures period. Over 40% of the pediatric hospital costs for Fontan patients were estimated to occur after the last planned surgery.Key Words: Fontan patients, hospital cost, congenital heart disease, health serviceThe Fontan procedure is the final in a series of staged palliations for single-ventricle congenital heart disease, affecting approximately 1 in 2000 live births. 1, 2 As the outcomes of the staged procedures improve, an increasing number of children with complex heart conditions have survived into adulthood. [2][3][4][5] More patients are now undergoing staged procedures 6-8 but the trend in long-term inpatient cost and care needs for this population are unclear. Using hospital billing data associated with encounters, Keren et al. (2012) have shown that the cumulative costs of the 10 most expensive pediatric conditions in the US accounted for approximately one third of the standardized costs for all pediatric visits to hospital, and single-ventricle congenital heart defects such as hypoplastic left heart syndrome (HLHS) ranked 7 th on the list. 9 Previous studies also documented the costs of a single staged procedure 10, 11 , the costs of non-cardiac admissions to pediatric hospitals 12 , and the costs of admissions in adults for this patient group. 13 Nevertheless, the literature is limited by its focus on single encounters and knowledge regarding the long-term trend in hospital costs for single-ventricle patients is lacking. The purpose of this study was to assess the trend in longterm hospital costs for single-ventricle patients surviving the F...

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Section: Accepted Manuscriptmentioning

confidence: 99%

Hospital Inpatient Costs for Single Ventricle Patients Surviving the Fontan Procedure

Huang

Schilling

Dalziel

et al. 2017

The American Journal of Cardiology

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“…Although surgical survival rates have improved greatly in the past 20 years, there is still a high possibility that children with HLHS are at risk for mental and physical abnormalities (Connor & Thiagarajan, 2007). The oldest survivors of surgical reconstruction are in their late twenties, as techniques for survival were pioneered in the early 1980s (Wernovsky, 2008). Thus, life expectancy remains uncertain.…”

Section: Treatment Optionsmentioning

confidence: 99%

“…al., 2004). Some clinicians say that comfort care should no longer be presented as an option due to advances in medicine and surgery (Wernovsky, 2008). Physicians are faced with the ethical dilemma of recommending compassionate care as short-term outcomes are still evolving and long-term outcomes are still uncertain (Osiovich, Phillipos, Byrne, & Robertson, 2000).…”

Section: Decision Factorsmentioning

confidence: 99%

Hypoplastic Left Heart Syndrome: Parent Support for Early Decision Making

Toebbe

Yehle

Kirkpatrick

et al. 2013

Journal of Pediatric Nursing

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No extramural funding has been provided for this manuscript. No previous presentations of this manuscript have been made. No commercial financial support has been provided for this manuscript.Hypoplastic Left Heart Syndrome is a life threatening congenital cardiac anomaly. After a child has been diagnosed with hypoplastic left heart syndrome, parents must make life or death decisions within days of birth. Healthcare providers must provide appropriate education so that parents are able to make informed, timely decisions. Information regarding the diagnosis, treatment options, and parental decision making process for initial decision making for hypoplastic left heart syndrome are provided to guide nurses who work with these families. The challenging decision making process which parents must go through after diagnosis of hypoplastic left heart syndrome will be described.Rachel and Evan, a young couple expecting their first child, received unexpected and devastating news at the completion of a routine screening ultrasound at 20 weeks. The ultrasound revealed that their unborn son had a congenital heart defect. After further testing, the diagnosis of hypoplastic left heart syndrome (HLHS) was confirmed. Rachel and Evan received information about HLHS from several physicians, made an appointment with a pediatric cardiothoracic surgeon to discuss surgical options, and found information from pediatric hospitals and HLHS online support groups. Ultimately, Rachel and Evan had decisions to make. After several sleepless nights of reviewing information, statistics, options, and prognosis, they elected to continue with the pregnancy and give their son a chance at life.

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“…[21][22][23] Cardiac surgery for infants with hypoplastic leftheart syndrome has shifted, in the view of some physicians, from being ethically permissible to ethically obligatory, although this is not a universally held opinion. Similarly, extracorporeal membrane oxygenation is widely considered ethically permissible and is commonly included as a treatment option when counseling parents.…”

Section: Introductionmentioning

confidence: 99%

Ethics of emerging technologies and their transition to accepted practice: intestinal transplant for short bowel syndrome

Cummings,

Mercurio

2012

J Perinatol

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Parental counseling becomes complex when considering the use of emerging technologies, especially if it is unclear whether the level of evidence is sufficient to transform the proposed therapy into accepted practice. This paper addresses ethical issues underlying medical decisionmaking and counseling in the setting of emerging treatments, when longterm outcomes are still in the process of being fully validated. We argue that the ethical transition of emerging technologies, ideally from ethically impermissible to permissible, to obligatory, depends primarily on two factors: outcome data (or prognosis) and treatment feasibility. To illustrate these points, we will use intestinal transplant for short bowel syndrome (SBS) as a specific example. After reviewing the data, this paper will identify the ethical justifications for both comfort care only and intestinal transplant in patients with ultra SBS, and argue that both are ethically permissible, but neither is obligatory. The approach outlined will not only be valuable as ultra SBS outcomes data continue to change, but will also be applicable to other novel therapies as they emerge in perinatal medicine.

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The Paradigm Shift Toward Surgical Intervention for Neonates With Hypoplastic Left Heart Syndrome

Cited by 64 publications

References 42 publications

Hospital Inpatient Costs for Single Ventricle Patients Surviving the Fontan Procedure

Hospital Inpatient Costs for Single Ventricle Patients Surviving the Fontan Procedure

Hypoplastic Left Heart Syndrome: Parent Support for Early Decision Making

Ethics of emerging technologies and their transition to accepted practice: intestinal transplant for short bowel syndrome

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