Planning the specialized care of adult congenital heart disease patients: from numbers to guidelines
Humans; Adult; Guidelines as Topic; Adolescent Transitions; Heart Diseases/congenital/epidemiology/therapy; Hospital Planning/statistics & numerical data
Guidelines published in 2001 recommended 1 regional adult congenital heart disease (ACHD) center per 3 to 10 million population. Our objective was to determine if published guidelines on the numbers of regional ACHD centers are sufficient to meet the needs of adults with congenital heart disease in the general population. Population data were examined to evaluate the recommendations for the number of regional centers. We extrapolated a population prevalence of 4.09 per 1,000 adults corresponding to 847,896 and 87,375 patients with ACHD in the United States and Canada, respectively. We reviewed the information currently available on the numbers of ACHD facilities of any kind indexed to continental populations. We examined the distribution of disease and health services in pediatric and adult populations and examined the evidence for pressure points during the transition process. Published data on 6 of the largest regional ACHD centers were used to model regional center care. We reviewed determinants and recommendations for follow-up in regional centers. We explore 3 scenarios of referral patterns to regional centers, examining their impact of the number of centers required per country population. In conclusion, we demonstrate that 1 regional ACHD center for a population of 2.0 million adults appears to be closer to what is required for improving access to specialized care for patients with ACHD in the United States and Canada.
Marelli AJ; Therrien J; Mackie AS; Ionescu-Ittu R; Pilote L
American Heart Journal
2009
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.ahj.2008.08.029" target="_blank" rel="noreferrer">10.1016/j.ahj.2008.08.029</a>
Health care resource utilization in adults with congenital heart disease
Female; Humans; Male; Adult; Aged; Middle Aged; Length of Stay; Outcome Assessment (Health Care); Severity of Illness Index; Emergency Service; adolescent; Hospital/utilization; Adolescent Transitions; Patient Acceptance of Health Care/statistics & numerical data; Hospitalization/statistics & numerical data; Heart Defects; Age Distribution; Databases; Factual; Ambulatory Care/utilization; Congenital/epidemiology/etiology/pathology/therapy; Health Resources/utilization; Quebec/epidemiology
The number of adults with congenital heart disease (CHD) is increasing. However, rates of health care resource utilization in this population are unknown. The objectives of this study were to describe the use of general health care resources in adults with CHD and to examine the impact of CHD severity on resource utilization. The study consisted of adults alive in 1996 who had > or = 1 diagnosis of a CHD lesion conforming to the International Classification of Disease, Ninth Revision, in the physician's claims database of the province of Quebec from 1983 to 2000. From 1996 to 2000, rates of health care utilization were measured. The impact of the severity of CHD on the use of health care resources was determined using multivariate models to adjust for age, gender, Charlson co-morbidity score, and duration of follow-up. The study population consisted of 22,096 adults with CHD (42% men). From 1996 to 2000, 87% received outpatient care from specialists, 68% visited emergency rooms, 51% were hospitalized, and 16% were admitted to critical care units. Patients with severe CHD had higher adjusted rates of outpatient cardiologist care (rate ratio [RR] 2.24, 95% confidence interval [CI] 2.06 to 2.45), emergency department utilization (RR 1.09, 95% CI 1.03 to 1.17), hospitalization (RR 1.30, 95% CI 1.19 to 1.43), and days in critical care (RR 2.12, 95% CI 1.80 to 2.50) than patients with other congenital cardiac lesions. Hospitalization rates were higher than in the general Quebec adult population (RR 2.08, 95% CI 2.00 to 2.17). In conclusion, adults with CHD have high rates of health care resource utilization, particularly those with severe lesions. Appropriate resource allocation is required to serve this growing population.
2007
Mackie AS; Pilote L; Ionescu-Ittu R; Rahme E; Marelli AJ
The American Journal Of Cardiology
2007
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.amjcard.2006.10.054" target="_blank" rel="noreferrer">10.1016/j.amjcard.2006.10.054</a>
Changing mortality in congenital heart disease
Child; Female; Humans; infant; Male; Young Adult; Cohort Studies; Prognosis; Aged; Middle Aged; Age Factors; Survival Analysis; Sex Factors; Quebec; adolescent; Preschool; infant; Adolescent Transitions; Newborn; retrospective studies; cause of death; Heart Defects; Congenital/diagnosis/mortality/surgery; Cardiac Surgical Procedures/methods/mortality
OBJECTIVES: This study sought to characterize temporal trends in all-cause mortality in patients with congenital heart disease (CHD). BACKGROUND: Historically, most deaths in patients with CHD occurred in early childhood. Notable advances have since been achieved that may impact on mortality trends. METHODS: We conducted a population-based cohort study of patients with CHD in Quebec, Canada, from July 1987 to June 2005. A total of 8,561 deaths occurred in 71,686 patients with CHD followed for 982,363 patient-years. RESULTS: The proportion of infant and childhood deaths markedly declined from 1987 to 2005, with a reduction in mortality that exceeded that of the general population. Distribution of age at death transitioned from a bimodal to unimodal, albeit skewed, pattern, more closely approximating the general population. Overall, mortality decreased by 31% (mortality rate ratio: 0.69, 95% confidence interval [CI]: 0.61 to 0.79) in the last (2002 to 2005) relative to the first (1987 to 1990) period of observation. Mortality rates decreased in all age groups below 65 years, with the largest reduction in infants (mortality rate ratio: 0.23, 95% CI: 0.12 to 0.47). In adults 18 to 64 years, the mortality reduction (mortality rate ratio: 0.84, 95% CI: 0.73 to 0.97) paralleled the general population. Gains in survival were mostly driven by reduced mortality in severe forms of CHD, particularly in children (mortality rate ratio: 0.33, 95% CI: 0.19 to 0.60), and were consistent across most subtypes. CONCLUSIONS: Deaths in CHD have shifted away from infants and towards adults, with a steady increase in age at death and decreasing mortality.
2010
Khairy P; Ionescu-Ittu R; Mackie AS; Abrahamowicz M; Pilote L; Marelli AJ
Journal Of The American College Of Cardiology
2010
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Journal Article
<a href="http://doi.org/10.1016/j.jacc.2010.03.085" target="_blank" rel="noreferrer">10.1016/j.jacc.2010.03.085</a>
Congenital heart disease in the general population: changing prevalence and age distribution
Child; Female; Humans; Male; Cohort Studies; Adult; Prevalence; Middle Aged; Quebec; adolescent; Preschool; Adolescent Transitions; Heart Defects; Age Distribution; Databases; Congenital/epidemiology; Population; Factual/trends
BACKGROUND: Empirical data on the changing epidemiology of congenital heart disease (CHD) are scant. We determined the prevalence, age distribution, and proportion of adults and children with severe and other forms of CHD in the general population from 1985 to 2000. METHODS AND RESULTS: Where healthcare access is universal, we used administrative databases that systematically recorded all diagnoses and claims. Diagnostic codes conformed to the International Classification of Disease, ninth revision. Severe CHD was defined as tetralogy of Fallot, truncus arteriosus, transposition complexes, endocardial cushion defects, and univentricular heart. Prevalence of severe and other CHD lesions was determined in 1985, 1990, 1995, and 2000 using population numbers in Quebec. Children were subjects <18 years of age. The prevalence was 4.09 per 1000 adults in the year 2000 for all CHD and 0.38 per 1000 (9%) for those with severe lesions. Female subjects accounted for 57% of the adult CHD population. The median age of all patients with severe CHD was 11 years (interquartile range, 4 to 22 years) in 1985 and 17 years (interquartile range, 10 to 28 years) in 2000 (P<0.0001). The prevalence of severe CHD increased from 1985 to 2000, but the increase in adults was significantly higher than that observed in children. In the year 2000, 49% of those alive with severe CHD were adults. CONCLUSIONS: The prevalence in adults and median age of patients with severe CHD increased in the general population from 1985 to 2000. In 2000, there were nearly equal numbers of adults and children with severe CHD.
2007
Marelli AJ; Mackie AS; Ionescu-Ittu R; Rahme E; Pilote L
Circulation
2007
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1161/CIRCULATIONAHA.106.627224" target="_blank" rel="noreferrer">10.1161/CIRCULATIONAHA.106.627224</a>