Creating the BELgian COngenital heart disease database combining administrative and clinical data (BELCODAC) : rationale, design and methodology

Background: Congenital heart disease (CHD) entails a broad spectrum of malformations with various degrees of severity and prognosis. Consequently, new and specific healthcare needs are emerging, requiring responsive healthcare provision. Research on this matter is predominantly performed on population-based databases, to inform clinicians, researchers and policy-makers on health outcomes and economic burden of CHD. Most databases contain data either from administrative sources or from clinical systems. We describe the methodological design of the BELgian COngenital Heart Disease Database combining Administrative and Clinical data (BELCODAC), to investigate patients with CHD. Methods: Data on clinical characteristics from three university hospitals in Belgium (Leuven, Ghent and Brussels) were merged with mortality and socio-economic data from the official Belgian statistical office (StatBel), and with healthcare use data from the InterMutualistic Agency, an overarching national organization that collects data from the seven sickness funds for all Belgian citizens. Over 60 variables with multiple entries over time are included in the database. Results: BELCODAC contains data on 18,510 patients, of which 8926 patients (48%) have a mild, 7490 (41%) a moderately complex and 2094 (11%) a complex anatomical heart defect. The most prevalent diagnosis is Ventricular Septal Defect in 3879 patients (21%), followed by Atrial Septal Defect in 2565 patients (14%). Conclusions: BELCODAC comprises longitudinal data on patients with CHD in Belgium. This will help build evidence-based provision of care to the changing CHD population

Physical functioning, mental health, and quality of life in different congenital heart defects : comparative analysis in 3538 patients from 15 countries

Background: We compared physical functioning, mental health, and quality of life (QoL) of patients with different subtypes of congenital heart disease (CHD) in a large international sample and investigated the role of functional class in explaining the variance in outcomes across heart defects. Methods: In the cross-sectional Assessment of Patterns of Patient-Reported Outcome in Adults with Congenital Heart Disease-International Study (APPROACH-IS), we enrolled 4028 adult patients with CHD from 15 countries. Diagnostic groups with at least 50 patients were included in these analyses, yielding a sample of 3538 patients (median age: 32 years; 52% women). Physical functioning, mental health, and QoL were measured with the SF-12 health status survey, Hospital Anxiety and Depression Scale (HADS), linear analog scale (LAS) and Satisfaction with Life Scale, respectively. Functional class was assessed using the patient-reported New York Heart Association (NYHA) class. Multivariable general linear mixed models were applied to assess the relationship between the type of CHD and patient-reported outcomes, adjusted for patient characteristics, and with country as random effect. Results: Patients with coarctation of the aorta and those with isolated aortic valve disease reported the best physical functioning, mental health, and QoL. Patients with cyanotic heart disease or Eisenmenger syndrome had worst outcomes. The differences were statistically significant, above and beyond other patient characteristics. However, the explained variances were small (0.6% to 4.1%) and decreased further when functional status was added to the models (0.4% to 0.9%). Conclusions: Some types of CHD predict worse patient-reported outcomes. However, it appears that it is the functional status associated with the heart defect rather than the heart defect itself that shapes the outcomes.peer-reviewe

Exploring classification systems and level of care in relation to outcomes in adults with congenital heart disease

The researchgroup led by Prof. dr.Philip Moons has expertise in conducting research on the organization of carefor adolescents and young adults with congenital heart disease. This multidisciplinary research group examines how the care for these individuals can be improved so that optimal health outcomes are achieved. In this project,we investigate whether the care setting (primary, secondary or tertiary care) for people with congenital heart disease (ConHD) has an impact on mortality, morbidity and health care utilization. More precisely, this study will examine which care setting is most appropriate to guarantee optimal results. This PhD project aims to study the possibilities of subsidiarity in the care of patients with ConHD. For this PhD, we will use clinical and administrative databases. Data collection will be conducted in academic hospitals and in collaboration with Health Insurance Organizations and the National Institute of Statistics.status: publishe

Prediction of 10-year mortality in adults with congenital heart disease using disease severity and functional indices

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Predicting 15-Year Mortality in Adults With Congenital Heart Disease Using Disease Severity and Functional Indices

BACKGROUND: Disease severity and functional indices are widely used for risk stratification of patients with congenital heart disease (CHD). The predictive value of these classification systems for assessing long-term mortality is unknown. We aimed to determine and compare the predictive value of disease severity and functional indices for 15-year mortality in adults with CHD. METHODS: Between 2000 and 2002, we categorized 629 patients with CHD (median age, 24 years; 60% were men) on 5 indices: disease complexity scores based on criteria of Task Force 1 of the 32nd Bethesda Conference; Disease Severity Index; New York Heart Association functional class; Ability Index; and Congenital Heart Disease Functional Index (CHDFI). Harrell's concordance statistics index (C-index) was calculated for each classification system through Cox hazard regression analysis to evaluate their performance on predicting all-cause and cardiac mortality over the subsequent 15 years. RESULTS: Over the 15-year follow-up period, 40 patients died, resulting in a mortality rate of 4.56 per 1000 person-years. The CHDFI showed the highest discrimination ability for all-cause mortality (C-index = 0.74; P < 0.001) and cardiac mortality (C-index = 0.76; P < 0.001). The C-index for the other classifications ranged from 0.58 to 0.71 for all-cause mortality and 0.55 to 0.67 for cardiac mortality. The CHDFI showed statistical superiority toward the Disease Severity Index (P < 0.01). CONCLUSIONS: These results suggest that the Task Force 1 of the 32nd Bethesda Conference, New York Heart Association functional class, Ability Index, and CHDFI could aid in predicting long-term mortality. The CHDFI demonstrated the highest discrimination ability and emphasizes the importance to integrate both anatomic and physiological variables to predict long-term mortality.status: publishe

The newly developed Adult Congenital Heart Disease Anatomic and Physiological classification: first predictive validity evaluation.

Background Risk stratification for adults with congenital heart disease is usually based on the anatomic complexity of the patients' defect. The 2018 American Heart Association/American College of Cardiology guidelines for the management of adults with congenital heart disease proposed a new classification scheme, combining anatomic complexity and current physiological stage of the patient. We aimed to investigate the capacity of the Adult Congenital Heart Disease Anatomic and Physiological classification to predict 15-year mortality. Methods and Results Data on 5 classification systems were collected for 629 patients at the outpatient clinic for a previous study. After 15 years, data on mortality were obtained through medical record review. For this assessment, we additionally collected information on physiological state to determine the Adult Congenital Heart Disease Anatomic and Physiological classification. Harrell's concordance statistics index, obtained through a univariate Cox proportional hazards regression, was 0.71 (95% CI, 0.63-0.78) for the Adult Congenital Heart Disease Anatomic and Physiological classification. Harrell's concordance statistics index of the congenital heart disease anatomic component only was 0.67 (95% CI, 0.60-0.74). The highest Harrell's concordance statistics index was obtained for the anatomic complexity in combination with the Congenital Heart Disease Functional Index (0.79; 95% CI, 0.73-0.84). Conclusions This first investigation of the Adult Congenital Heart Disease Anatomic and Physiological classification system provides empirical support for adding the physiological component to the anatomic complexity in the prediction of 15-year cardiac mortality.status: publishe

Evaluation of hyperacute infarct volume using ASPECTS and brain CT perfusion core volume

OBJECTIVE: To compare the accuracy of Alberta Stroke Program Early Computed Tomography Score (ASPECTS) and CT perfusion to detect established infarction in acute anterior circulation stroke. METHODS: We performed an observational study in 59 acute anterior circulation ischemic stroke patients who underwent brain noncontrast CT, CT perfusion, and MRI within 100 minutes from CT imaging. ASPECTS scores were calculated by 4 blinded vascular neurologists. The accuracy of ASPECTS and CT perfusion core volume to detect an acute MRI diffusion lesion of ≥70 mL was evaluated using receiver operating characteristics analysis and optimum cutoff values were calculated using Youden J. RESULTS: Median ASPECTS score was 8 (interquartile range [IQR] 5-9). Median CT perfusion core volume was 22 mL (IQR 10.4-71.9). Median MRI diffusion lesion volume was 24.5 mL (IQR 10-63.9). No significant difference was found between the accuracy of CT perfusion and ASPECTS (c statistic 0.95 vs 0.87, p value for difference = 0.17). The optimum ASPECTS cutoff score to detect a diffusion-weighted imaging lesion ≥70 mL was <7 (sensitivity 0.74, specificity 0.86, Youden J = 0.60) and the optimum CT perfusion core volume cutoff was ≥50 mL (sensitivity 0.86, specificity 0.97, Youden J = 0.84). The CT perfusion core lesion covered a median of 100% (IQR 86%-100%) of the acute MRI lesion volume (Pearson R = 0.88; R2 = 0.77). CONCLUSIONS: We found no significant difference between the accuracy of CT perfusion and ASPECTS to predict hyperacute MRI lesion volume in ischemic stroke.status: publishe

Evaluation of hyperacute infarct volume using ASPECTS and brain CT perfusion core volume

OBJECTIVE: To compare the accuracy of Alberta Stroke Program Early Computed Tomography Score (ASPECTS) and CT perfusion to detect established infarction in acute anterior circulation stroke. METHODS: We performed an observational study in 59 acute anterior circulation ischemic stroke patients who underwent brain noncontrast CT, CT perfusion, and MRI within 100 minutes from CT imaging. ASPECTS scores were calculated by 4 blinded vascular neurologists. The accuracy of ASPECTS and CT perfusion core volume to detect an acute MRI diffusion lesion of ≥70 mL was evaluated using receiver operating characteristics analysis and optimum cutoff values were calculated using Youden J. RESULTS: Median ASPECTS score was 8 (interquartile range [IQR] 5-9). Median CT perfusion core volume was 22 mL (IQR 10.4-71.9). Median MRI diffusion lesion volume was 24.5 mL (IQR 10-63.9). No significant difference was found between the accuracy of CT perfusion and ASPECTS (c statistic 0.95 vs 0.87, p value for difference = 0.17). The optimum ASPECTS cutoff score to detect a diffusion-weighted imaging lesion ≥70 mL was <7 (sensitivity 0.74, specificity 0.86, Youden J = 0.60) and the optimum CT perfusion core volume cutoff was ≥50 mL (sensitivity 0.86, specificity 0.97, Youden J = 0.84). The CT perfusion core lesion covered a median of 100% (IQR 86%-100%) of the acute MRI lesion volume (Pearson R = 0.88; R2 = 0.77). CONCLUSIONS: We found no significant difference between the accuracy of CT perfusion and ASPECTS to predict hyperacute MRI lesion volume in ischemic stroke

Creating the BELgian COngenital heart disease database combining administrative and clinical data (BELCODAC): Rationale, design and methodology

BACKGROUND: Congenital heart disease (CHD) entails a broad spectrum of malformations with various degrees of severity and prognosis. Consequently, new and specific healthcare needs are emerging, requiring responsive healthcare provision. Research on this matter is predominantly performed on population-based databases, to inform clinicians, researchers and policy-makers on health outcomes and economic burden of CHD. Most databases contain data either from administrative sources or from clinical systems. We describe the methodological design of the BELgian COngenital Heart Disease Database combining Administrative and Clinical data (BELCODAC), to investigate patients with CHD. METHODS: Data on clinical characteristics from three university hospitals in Belgium (Leuven, Ghent and Brussels) were merged with mortality and socio-economic data from the official Belgian statistical office (StatBel), and with healthcare use data from the InterMutualistic Agency, an overarching national organization that collects data from the seven sickness funds for all Belgian citizens. Over 60 variables with multiple entries over time are included in the database. RESULTS: BELCODAC contains data on 18,510 patients, of which 8926 patients (48%) have a mild, 7490 (41%) a moderately complex and 2094 (11%) a complex anatomical heart defect. The most prevalent diagnosis is Ventricular Septal Defect in 3879 patients (21%), followed by Atrial Septal Defect in 2565 patients (14%). CONCLUSIONS: BELCODAC comprises longitudinal data on patients with CHD in Belgium. This will help build evidence-based provision of care to the changing CHD population.status: publishe