The elephant in the room: ethical issues associated with rare and expensive medical conditions

2015 ◽  
Vol 25 (8) ◽  
pp. 1621-1625 ◽  
Author(s):  
Constantine D. Mavroudis ◽  
Constantine Mavroudis ◽  
Jeffrey P. Jacobs
Keyword(s):  
Resource Allocation ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Heart Surgery ◽  
Ethical Issues ◽  
Healthcare Resource ◽  
Congenital Heart Surgery ◽  
Medical Conditions ◽  
Economic Perspectives

AbstractThe treatment of rare and expensive medical conditions is one of the defining qualities of paediatric cardiology and congenital heart surgery. Increasing concerns over healthcare resource allocation are challenging the merits of treating more expensive forms of congenital heart disease, and this trend will almost certainly continue. In this manuscript, the problems of resource allocation for rare and expensive medical conditions are described from philosophical and economic perspectives. The argument is made that current economic models are limited in the ability to assess the value of treating expensive and rare forms of congenital heart disease. Further, multi-disciplinary approaches are necessary to best determine the merits of treating a patient population such as those with significant congenital heart disease that sometimes requires enormous healthcare resources.

scholarly journals Evaluation of Complications of Heart Surgery in Children With Congenital Heart Disease at Dena Hospital of Shiraz

2015 ◽  
Vol 8 (5) ◽  
pp. 33 ◽  
Author(s):  
Maryam Mirzaei ◽  
Samaneh Mirzaei ◽  
Elham Sepahvand ◽  
Afifeh Rahmanian Koshkaki ◽  
Marzieh Kargar Jahromi
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Heart Surgery ◽  
Open Heart Surgery ◽  
Vascular Complications ◽  
Congenital Heart Surgery ◽  
Morbidity And Mortality ◽  
High Morbidity ◽  
Cross Sectional

<p><strong>INTRODUCTION:</strong> Today, with progress in the field of congenital heart surgery, different complicated actions are done in children. These actions may be associated with several complications, especially open heart surgery in which the cardiopulmonary bypass (CPB) is used. Serious complications can be caused high morbidity and mortality rates. Present study has been performed to determine the incidence of morbidity and mortality in cardiac surgery in children.</p> <p><strong>METHOD:</strong> In a cross-sectional retrospective, records of 203 patients undergoing surgery for congenital heart disease in Dena hospital during 2013-2015 were reviewed for incidence of complications. Data was analyzed by using descriptive and analytical statistics and using SPSS version 18.</p> <p><strong>RESULTS:</strong> The mean age of samples was 3/65±4/47 years. The majority of samples (73/8%) were undergoing open surgery. The overall adverse cardiovascular complications were respectively, renal complications (44/3%), lung (40/3%), anemia (35/9%), heart (34/4%), gastrointestinal (17/2%), brain (14/2%), need for re-intubation of the trachea 11/3%), infection (7/8%) required reoperation (5/9%) and vascular complications (1/4%).</p> <p><strong>CONCLUSION:</strong> High incidence of complications after congenital heart surgery makes necessary attention to complications and their treatment after surgery. It is necessary to apply the measures and careful monitoring of patients to minimize these effects.</p>

Analysis of outcomes for congenital cardiac disease: can we do better?

2007 ◽  
Vol 17 (S4) ◽  
pp. 145-158 ◽  
Author(s):  
Jeffrey P. Jacobs ◽  
Gil Wernovsky ◽  
Martin J. Elliott
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Thoracic Surgery ◽  
Working Group ◽  
European Association ◽  
Congenital Heart ◽  
Heart Surgery ◽  
Congenital Heart Surgery ◽  
European Paediatric

AbstractThis review discusses the historical aspects, current state of the art, and potential future advances in the areas of nomenclature and databases for the analysis of outcomes of treatments for patients with congenitally malformed hearts. We will consider the current state of analysis of outcomes, lay out some principles which might make it possible to achieve life-long monitoring and follow-up using our databases, and describe the next steps those involved in the care of these patients need to take in order to achieve these objectives. In order to perform meaningful multi-institutional analyses, we suggest that any database must incorporate the following six essential elements: use of a common language and nomenclature, use of an established uniform core dataset for collection of information, incorporation of a mechanism of evaluating case complexity, availability of a mechanism to assure and verify the completeness and accuracy of the data collected, collaboration between medical and surgical subspecialties, and standardised protocols for life-long follow-up. During the 1990s, both The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons created databases to assess the outcomes of congenital cardiac surgery. Beginning in 1998, these two organizations collaborated to create the International Congenital Heart Surgery Nomenclature and Database Project. By 2000, a common nomenclature, along with a common core minimal dataset, were adopted by The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons, and published in the Annals of Thoracic Surgery. In 2000, The International Nomenclature Committee for Pediatric and Congenital Heart Disease was established. This committee eventually evolved into the International Society for Nomenclature of Paediatric and Congenital Heart Disease. The working component of this international nomenclature society has been The International Working Group for Mapping and Coding of Nomenclatures for Paediatric and Congenital Heart Disease, also known as the Nomenclature Working Group. By 2005, the Nomenclature Working Group crossmapped the nomenclature of the International Congenital Heart Surgery Nomenclature and Database Project of The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons with the European Paediatric Cardiac Code of the Association for European Paediatric Cardiology, and therefore created the International Paediatric and Congenital Cardiac Code, which is available for free download from the internet at [http://www.IPCCC.NET].This common nomenclature, the International Paediatric and Congenital Cardiac Code, and the common minimum database data set created by the International Congenital Heart Surgery Nomenclature and Database Project, are now utilized by both The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons. Between 1998 and 2007 inclusive, this nomenclature and database was used by both these two organizations to analyze outcomes of over 100,000 patients undergoing surgical treatment for congenital cardiac disease. Two major multi-institutional efforts that have attempted to measure the complexity of congenital heart surgery are the Risk Adjustment in Congenital Heart Surgery-1 system, and the Aristotle Complexity Score. Current efforts to unify the Risk Adjustment in Congenital Heart Surgery-1 system and the Aristotle Complexity Score are in their early stages, but encouraging. Collaborative efforts involving The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons are under way to develop mechanisms to verify the completeness and accuracy of the data in the databases. Under the leadership of The MultiSocietal Database Committee for Pediatric and Congenital Heart Disease, further collaborative efforts are ongoing between paediatric and congenital cardiac surgeons and other subspecialties, including paediatric cardiac anaesthesiologists, via The Congenital Cardiac Anesthesia Society, paediatric cardiac intensivists, via The Pediatric Cardiac Intensive Care Society, and paediatric cardiologists, via the Joint Council on Congenital Heart Disease and The Association for European Paediatric Cardiology.In finalising our review, we emphasise that analysis of outcomes must move beyond mortality, and encompass longer term follow-up, including cardiac and non cardiac morbidities, and importantly, those morbidities impacting health related quality of life. Methodologies must be implemented in these databases to allow uniform, protocol driven, and meaningful, long term follow-up.

Incidence, risk factors, and outcomes of acute kidney injury in adults undergoing surgery for congenital heart disease

2016 ◽  
Vol 27 (6) ◽  
pp. 1068-1075 ◽  
Author(s):  
David M. Kwiatkowski ◽  
Elizabeth Price ◽  
David M. Axelrod ◽  
Anitra W. Romfh ◽  
Brian S. Han ◽  
...  
Keyword(s):  
Risk Factors ◽  
Acute Kidney Injury ◽  
Congenital Heart Disease ◽  
Cardiac Surgery ◽  
Heart Disease ◽  
Congenital Heart ◽  
Heart Surgery ◽  
Kidney Injury ◽  
Congenital Heart Surgery ◽  
Left Ventricular

AbstractBackgroundAcute kidney injury after cardiac surgery is a frequent and serious complication among children with congenital heart disease (CHD) and adults with acquired heart disease; however, the significance of kidney injury in adults after congenital heart surgery is unknown. The primary objective of this study was to determine the incidence of acute kidney injury after surgery for adult CHD. Secondary objectives included determination of risk factors and associations with clinical outcomes.MethodsThis single-centre, retrospective cohort study was performed in a quaternary cardiovascular ICU in a paediatric hospital including all consecutive patients ⩾18 years between 2010 and 2013.ResultsData from 118 patients with a median age of 29 years undergoing cardiac surgery were analysed. Using Kidney Disease: Improving Global Outcome creatinine criteria, 36% of patients developed kidney injury, with 5% being moderate to severe (stage 2/3). Among higher-complexity surgeries, incidence was 59%. Age ⩾35 years, preoperative left ventricular dysfunction, preoperative arrhythmia, longer bypass time, higher Risk Adjustment for Congenital Heart Surgery-1 category, and perioperative vancomycin use were significant risk factors for kidney injury development. In multivariable analysis, age ⩾35 years and vancomycin use were significant predictors. Those with kidney injury were more likely to have prolonged duration of mechanical ventilation and cardiovascular ICU stay in the univariable regression analysis.ConclusionsWe demonstrated that acute kidney injury is a frequent complication in adults after surgery for CHD and is associated with poor outcomes. Risk factors for development were identified but largely not modifiable. Further investigation within this cohort is necessary to better understand the problem of kidney injury.

Nomenclature and databases for the surgical treatment of congenital cardiac disease – an updated primer and an analysis of opportunities for improvement

2008 ◽  
Vol 18 (S2) ◽  
pp. 38-62 ◽  
Author(s):  
Jeffrey Phillip Jacobs ◽  
Marshall Lewis Jacobs ◽  
Constantine Mavroudis ◽  
Carl Lewis Backer ◽  
Francois G. Lacour-Gayet ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Thoracic Surgery ◽  
Working Group ◽  
European Association ◽  
Congenital Heart ◽  
Heart Surgery ◽  
Congenital Heart Surgery ◽  
European Paediatric

AbstractThis review discusses the historical aspects, current state of the art, and potential future advances in the areas of nomenclature and databases for the analysis of outcomes of treatments for patients with congenitally malformed hearts. We will consider the current state of analysis of outcomes, lay out some principles which might make it possible to achieve life-long monitoring and follow-up using our databases, and describe the next steps those involved in the care of these patients need to take in order to achieve these objectives. In order to perform meaningful multi-institutional analyses, we suggest that any database must incorporate the following six essential elements: use of a common language and nomenclature, use of an established uniform core dataset for collection of information, incorporation of a mechanism of evaluating case complexity, availability of a mechanism to assure and verify the completeness and accuracy of the data collected, collaboration between medical and surgical subspecialties, and standardised protocols for life-long follow-up.During the 1990s, both The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons created databases to assess the outcomes of congenital cardiac surgery. Beginning in 1998, these two organizations collaborated to create the International Congenital Heart Surgery Nomenclature and Database Project. By 2000, a common nomenclature, along with a common core minimal dataset, were adopted by The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons, and published in the Annals of Thoracic Surgery. In 2000, The International Nomenclature Committee for Pediatric and Congenital Heart Disease was established. This committee eventually evolved into the International Society for Nomenclature of Paediatric and Congenital Heart Disease. The working component of this international nomenclature society has been The International Working Group for Mapping and Coding of Nomenclatures for Paediatric and Congenital Heart Disease, also known as the Nomenclature Working Group. By 2005, the Nomenclature Working Group crossmapped the nomenclature of the International Congenital Heart Surgery Nomenclature and Database Project of The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons with the European Paediatric Cardiac Code of the Association for European Paediatric Cardiology, and therefore created the International Paediatric and Congenital Cardiac Code, which is available for free download from the internet at [http://www.IPCCC.NET].This common nomenclature, the International Paediatric and Congenital Cardiac Code, and the common minimum database data set created by the International Congenital Heart Surgery Nomenclature and Database Project, are now utilized by both The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons. Between 1998 and 2007 inclusive, this nomenclature and database was used by both of these two organizations to analyze outcomes of over 150,000 operations involving patients undergoing surgical treatment for congenital cardiac disease.Two major multi-institutional efforts that have attempted to measure the complexity of congenital heart surgery are the Risk Adjustment in Congenital Heart Surgery-1 system, and the Aristotle Complexity Score. Current efforts to unify the Risk Adjustment in Congenital Heart Surgery-1 system and the Aristotle Complexity Score are in their early stages, but encouraging. Collaborative efforts involving The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons are under way to develop mechanisms to verify the completeness and accuracy of the data in the databases. Under the leadership of The MultiSocietal Database Committee for Pediatric and Congenital Heart Disease, further collaborative efforts are ongoing between congenital and paediatric cardiac surgeons and other subspecialties, including paediatric cardiac anaesthesiologists, via The Congenital Cardiac Anesthesia Society, paediatric cardiac intensivists, via The Pediatric Cardiac Intensive Care Society, and paediatric cardiologists, via the Joint Council on Congenital Heart Disease and The Association for European Paediatric Cardiology.In finalising our review, we emphasise that analysis of outcomes must move beyond mortality, and encompass longer term follow-up, including cardiac and non cardiac morbidities, and importantly, those morbidities impacting health related quality of life. Methodologies must be implemented in these databases to allow uniform, protocol driven, and meaningful, long term follow-up.

The World Database for Pediatric and Congenital Heart Surgery: The Dawn of a New Era of Global Communication and Quality Improvement in Congenital Heart Disease

2017 ◽  
Vol 8 (5) ◽  
pp. 597-599 ◽  
Author(s):  
James D. St. Louis ◽  
Hiromi Kurosawa ◽  
Richard A. Jonas ◽  
Nestor Sandoval ◽  
Jorge Cervantes ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Quality Improvement ◽  
Heart Disease ◽  
Information Exchange ◽  
Congenital Heart ◽  
Heart Surgery ◽  
Congenital Heart Surgery ◽  
Improvement Program ◽  
Global Improvement ◽  
The World

The World Society for Pediatric and Congenital Heart Surgery was founded with the mission to “promote the highest quality comprehensive cardiac care to all patients with congenital heart disease, from the fetus to the adult, regardless of the patient’s economic means, with an emphasis on excellence in teaching, research, and community service.” Early on, the Society’s members realized that a crucial step in meeting this goal was to establish a global database that would collect vital information, allowing cardiac surgical centers worldwide to benchmark their outcomes and improve the quality of congenital heart disease care. With tireless efforts from all corners of the globe and utilizing the vast experience and invaluable input of multiple international experts, such a platform of global information exchange was created: The World Database for Pediatric and Congenital Heart Disease went live on January 1, 2017. This database has been thoughtfully designed to produce meaningful performance and quality analyses of surgical outcomes extending beyond immediate hospital survival, allowing capture of important morbidities and mortalities for up to 1 year postoperatively. In order to advance the societal mission, this quality improvement program is available free of charge to WSPCHS members. In establishing the World Database, the Society has taken an essential step to further the process of global improvement in care for children with congenital heart disease.

scholarly journals Effects of Remifentanil and Sufentanil Anesthesia on Cardiac Function and Serological Parameters in Congenital Heart Surgery

2021 ◽  
Vol 2021 ◽  
pp. 1-5
Author(s):  
Zhigang Qin ◽  
Younian Xu
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Treatment Group ◽  
Cardiac Function ◽  
Congenital Heart ◽  
Heart Surgery ◽  
Congenital Heart Surgery ◽  
Control Group ◽  
Muscle Rigidity ◽  
Significant Difference

In this study, we have investigated feasibility of remifentanil and sufentanil anesthesia in children with congenital heart disease surgery and its effects on cardiac function and serological parameters. For this purpose, a retrospective study was conducted on 120 children with congenital heart disease who underwent repair of ventricular septum or atrial septum in our hospital, specifically from January 2016 to January 2018, and 60 patients in each group were randomly divided into the control and treatment groups, respectively. The control group was anesthetized with sufentanil, and the treatment group was anesthetized with remifentanil. The heart function, serological indexes, and adverse reactions were observed and compared. We have observed that there was no significant difference in HR levels between these groups ( P > 0.05 ), but SDP and DBP values of the two groups were decreased after anesthetic induction ( P < 0.05 ). ACH, cortisol, and lactic acid in the treatment group were significantly lower than those in the control group, and the difference was statistically significant ( P < 0.05 ). The incidence of bradycardia, nausea and vomiting, hypotension, muscle rigidity, and respiratory depression in the treatment group was 16.67% lower than that in the control group ( P < 0.05 ). Remifentanil has less influence on hemodynamics and a better analgesic effect than fentanyl in inhibiting stress response in congenital heart surgery, which provides reference and basis for children congenital heart surgery.

scholarly journals Risk Factors for Mortality in Reoperations for Pediatric and Congenital Heart Surgery in a Developing Country

2017 ◽  
Vol 8 (4) ◽  
pp. 435-439 ◽  
Author(s):  
Carlos A. Villa-Hincapie ◽  
Marisol Carreno-Jaimes ◽  
Carlos E. Obando-Lopez ◽  
Jaime Camacho-Mackenzie ◽  
Juan P. Umaña-Mallarino ◽  
...  
Keyword(s):  
Risk Factors ◽  
Congenital Heart Disease ◽  
Cardiac Surgery ◽  
Heart Disease ◽  
Congenital Heart ◽  
Heart Surgery ◽  
Operative Mortality ◽  
Congenital Heart Surgery ◽  
Pediatric Cardiac Surgery ◽  
Cross Clamp Time

Background: The survival of patients with congenital heart disease has increased in the recent years, because of enhanced diagnostic capabilities, better surgical techniques, and improved perioperative care. Many patients will require reoperation as part of staged procedures or to treat grafts deterioration and residual or recurrent lesions. Reoperations favor the formation of cardiac adhesions and consequently increase surgery time; however, the impact on morbidity and operative mortality is certain. The objective of the study was to describe the risk factors for mortality in pediatric patients undergoing a reoperation for congenital heart disease. Methods: Historic cohort of patients who underwent reoperation after pediatric cardiac surgery from January 2009 to December 2015. Operations with previous surgical approach different to sternotomy were excluded from the analysis. Results: In seven years, 3,086 surgeries were performed, 481 were reoperations, and 238 patients fulfilled the inclusion criteria. Mean number of prior surgeries was 1.4 ± 0.6. Median age at the time of reoperation was 6.4 years. The most common surgical procedures were staged palliation for functionally univentricular heart (17.6%). Median cross-clamp time was 66 minutes. Younger age at the moment of resternotomy, longer cross-clamp time, and Society of Thoracic Surgeons–European Association for Cardio-Thoracic Surgery Congenital Heart Surgery (STAT) Mortality Categories risk category greater than three were risk factors for mortality. The number of resternotomies was not associated with mortality. Mortality prior to hospital discharge was 4.6%, and mortality after discharge but prior to 30 days after surgery was 0.54%. Operative mortality was 5.1%. Conclusions: Resternotomy in pediatric cardiac surgery is a safe procedure in our center.

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