Attitudes and Practices of Cardiologists and Surgeons Who Manage HLHS

Prša, Milan; Holly, Crystal; Carnevale, Franco A.; Justino, Henri; Rohlicek, Charles V.

doi:10.1542/peds.2009-1678

Cited by 54 publications

(37 citation statements)

References 19 publications

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“…Variation in patient cohorts, variable length of patient-clinician relationships, and a breakdown in interdisciplinary communication may all contribute to discordance among clinicians of different specialties. [35][36][37] Less than one-third of clinicians believed that ACD typically happen at the right time in the course of illness. More than 90% responded that discussions of overall goals of care should happen either during diagnosis or during a time of stability.…”

Section: Discussionmentioning

confidence: 99%

Barriers to Conducting Advance Care Discussions for Children With Life-Threatening Conditions

Zurakowski²,

2012

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Section: Discussionmentioning

confidence: 99%

Barriers to Conducting Advance Care Discussions for Children With Life-Threatening Conditions

Zurakowski²,

2012

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“…The identification of the critically important HLHS has been particularly successful, allowing extensive counseling of families, planning of surgeries and even in rare cases fetal interventions. According to a study by Prsa et al [14] in the case of antenatal diagnosis of HLHS allowing for prenatal counseling by cardiologist and cardiothoracic surgeons, 98.8% discussed continuation of pregnancy with staged palliative surgery after birth, 56.9% discussed continuation of pregnancy with compassionate care after birth, and 74.3% discussed termination of pregnancy. Due to the poor prognosis of this lesion and the variety of approaches, being able to counsel families prenatally becomes particularly important.…”

Section: Discussionmentioning

confidence: 99%

Improvement in Antenatal Diagnosis of Critical Congenital Heart Disease Implications for Postnatal Care and Screening

Israel¹,

Roofe²,

Saville³

et al. 2011

Fetal Diagn Ther

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Objective: This observational study was performed to examine the current timing and mode of diagnosis of critical congenital heart disease (CCHD), since early detection of cardiac lesions can significantly improve morbidity and mortality. Method: Ninety cases of CCHD in infants born in Middle Tennessee in 2009 were identified by weekly review of admissions to a single cardiac referral center. CCHD is defined as lesions requiring admission or re-admission for surgical or medical intervention within 1 month of life. Results: Overall, the observed antenatal detection rate of 49% is significantly greater than published values of 25%. Hypoplastic left heart syndrome was detected in 11/11, but only 5/16 coarctations were detected. Conclusion: Compared to earlier reports, our study showed a doubling of the antenatal detection rate. Perhaps efforts to improve early diagnosis of CCHD could focus on antenatal ultrasound screening techniques for lesions that are missed most often as well as on postnatal screening.

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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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Attitudes and Practices of Cardiologists and Surgeons Who Manage HLHS

Cited by 54 publications

References 19 publications

Barriers to Conducting Advance Care Discussions for Children With Life-Threatening Conditions

Barriers to Conducting Advance Care Discussions for Children With Life-Threatening Conditions

Improvement in Antenatal Diagnosis of Critical Congenital Heart Disease Implications for Postnatal Care and Screening

Hospital Inpatient Costs for Single Ventricle Patients Surviving the Fontan Procedure

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