Burden Of Congenital Heart Disease Research Articles

Paediatric and congenital heart disease in South America: an overview

Congenital heart diseases are one of the most common structural defects present at birth, with an approximate incidence of 8 per 1000 live births. As most countries in South America...

The Burden of Congenital Heart Disease in Libya

The Burden of Congenital Heart Disease in Libya

The Burden of Congenital Heart Disease in Libya

Congenital Heart Disease (CHD) is defined as a gross structural abnormality of the heart or intrathoracic great vessels that is actually or potentially of functional significance. It is the most common congenital problem that accounts for up to 25% of all congenital malformations presenting in the neonatal period [1]. The cause of CHD is multifactorial. Early diagnosis and proper and early medical or surgical intervention for most of the CHD could provide anatomical correction and a normal life expectancy. Patients born with severe forms of CHD are at approximately 12 times higher risk of mortality in the first year of life, particularly if they are missed in the neonatal period. Mortality in the first year of life was 18% for all CHD that are diagnosed in infancy [2]. Cardiac surgery with poor setup could have a higher mortality than not performing surgery. Hoffman et al reported that, given the causes of variation, there is no evidence for differences in incidence between different countries or times. The general worldwide incidence of CHD is 12–15/1000 live births [3]. Due to lack of reported national epidemiological studies in Libya, it is wise to make some statistical calculations for the incidence and prevalence of CHD. The birth rate in Libya is 27.6 live births/1000 populations [4]. The total estimated number of live births with CHD is about 2000 per year, which is added every year to the already existing pool. For the details of the different types, incidence and the mathematically calculated actual number of CHD in Libyan population, see table 1. The incidence of moderate to severe forms of CHD, which require urgent cardiac management, is about 4–5/1,000 live births [3]. In Libya there is a total number of at least 400 – 600 live births/year with moderate to severe forms of CHD, who need surgical or medical intervention in the first year of life. Table 1 Types, incidence and number of newly diagnosed CHDs per vearin Libya* Surgery is the treatment of choice for most of CHD, but cardiac catheterization and intervention are becoming a routine treatment for many of CHD such as closure of patent ductus arteriosus, atrial septal defect and ventricular septal defect and balloon dilatation of pulmonary and aortic valve stenosis. Centralization of the paediatric cardiac service improves the results of the treatment of CHD. Sweden and the United Kingdom have turned towards centralization of paediatric cardiac surgery to achieve the best results. In Sweden, the overall 30-days mortality for open-heart surgery was reduced from 9.5% before centralization (1988–1991) to 1.9% (1995–1997) after centralization [5]. In 2002 the total mortality for both closed and open heart surgery was 0.0% (personal communication).

69 Economic Burden of Congenital Heart Disease on Families

Objective: The economic burden of pediatric illness and its social impact on families has not been described in the area of congenital heart disease (CHD). The purpose of this study was to describe the economic burden of CHD as experienced by families.Methods: An exploratory inquiry using semi-structured interviews was conducted. A pruposive sampling technique was use to identify parents of children with varying CHD complexity and socioeconomic status (SES) admitted for congenital heart surgery at a tertiary care center. Complexity of CHD was approximated using the Risk Adjustment for Congenital Heart Surgery Method (RACHS-1). SES was estimated using Hollingshead's Four Factor Index Scale. Structured interviews guided by 6 questions focusing on the meaning of cost and the impact on social functioning on the family were conducted. Interviews lasted 45 minutes to 1 hour. All interviews were auditaped and transcribed verbatim. Data were numbered, sorted, and coded using NVIVO software. Three researchers independently examined the data to identify thematic categories.Results: Of the 20 interviews, the meaning of cost resulted in the emergence of two themes, uncertainty and lifestyle change. Data could be further sorted into 3 underlying categories of financial, emotional and family burden. Inter-rater reliability was 91%. As a result of increased disease complexity, families seem to experience a high level of stress in terms of finances, emotional drain, and family member burden. Families who received a prenatal diagnosis verbalized economic burden as an early stressor and altered personal spending prior to birth. Perception of the economic impact of the child's condition was dependent on baseline SES.Conclusion: Although the complexity of disease seems to increase economic burden, timing of diagnosis and baseline SES were also noted to contribute to economic stress.

Epidemiology of congenital heart disease in the United States

Data from the National Center for Health Statistics were examined to aid in assessing the burden of congenital heart disease in the United States. In 1979 through 1988 combined, 46,450 deaths were attributed to CHD, 26,319 occurring in the first year of life. Another 14,283 deaths were attributed to other congenital anomalies of the circulatory system. In 1988 through 1990 combined, there were >300,000 hospital discharges with any diagnosis of CHD, with 2.7 million days of care provided. For infants aged <1 year, the rate was 13.7 per 1000 live births per year. Another 242,049 discharges had any diagnosis of other congenital circulatory anomalies. In 1983 through 1985, >700,000 persons reported a history of CHD. In 1989, heart malformations were reported on the birth certificate of 4621 live births in 45 states and the District of Columbia. In 1988 through 1990 there were an estimated 37,445 repairs of atrial and ventricular septa. In addition, 45,635 cardiac catheterizations were performed in patients aged <5. Average annual percentage declines in infant mortality rates for the period 1979 through 1988 were consistent with an effect of improvements in surgical technique and intensive care. The average annual infant mortality rate for hypoplastic left heart syndrome increased 1.3%, and rates for five causes amenable to treatment such as transposition of great vessels declined. Infant mortality rates in nonmetropolitan areas were higher than in metropolitan areas, suggesting that limited access to care might be associated with mortality. Congenital heart disease is a significant cause of mortality and morbidity and health care costs in children and adults in the United States. Continued efforts are needed to develop and apply strategies to prevent the occurrence of congenital heart disease.