ORCID Profile
0000-0003-1530-0869
Current Organisation
KU Leuven
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Publisher: Oxford University Press (OUP)
Date: 10-2022
DOI: 10.1093/EURHEARTJ/EHAC544.1841
Abstract: Although many adults with congenital heart disease (CHD) still die prematurely, end-of-life care for these patients receives limited attention. There are indications that current care provision at the end of life is burdensome, expensive, and not in line with patients' needs and preferences. We sought to analyse end-of-life care in adult CHD patients to determine whether health services need to be optimized. This study aimed to describe patterns of healthcare consumption of adults with CHD who died in the last year of life. This retrospective mortality follow-back study used data of the BELgian COngenital heart disease Database combining Administrative and Clinical data (BELCODAC), including in idually linked healthcare claims, death certificates and clinical data from adults with CHD in Flanders (Belgium). For this study, adults with CHD who died between 2007 and 2016 from any cause except sudden death, accident or violence, were selected for inclusion. Accidental, violent, and sudden deaths were identified based on causes of death and healthcare use in the last 3 months of life. Healthcare consumption was based on nomenclature codes derived from healthcare claims data. A total of 327 eligible patients (median age: 58 y 54% women 43% mild CHD 45% moderate CHD 11% complex CHD 49% cardiovascular cause of death) were identified. During the last year of life, healthcare use increased substantially (Fig. 1). During the last month of life, 54% of patients were hospitalised, 55% visited the emergency department, and 15% were admitted to an intensive care unit at least once (Fig. 2). A total of 8% and 5% of patients underwent heart surgery or catherization in the last month of life, respectively. Furthermore, 70% of patients had at least one encounter with a general practitioner and 11% with a CHD specialist in the last month of life. Specialist palliative care was provided to 13% of patients in the last month of life. When looking at the subgroup of patients with CHD that died due to a cardiovascular cause, proportions of patients that were hospitalised or had visits at the emergency department or intensive care unit in the last month of life were similar (Fig. 2). However, these patients underwent more heart surgeries (11%) and catherizations (8%), had more encounters with CHD specialists (15%), and received remarkably less specialized palliative care (4%) in the last month of life. Resource utilization increased substantially during the last year of life, resulting in high acute healthcare consumption in the last month of life. It is remarkable that only a minority of patients received palliative care, especially when looking at patients who died due to a cardiovascular cause. Our findings motivate the need to assess if and how end-of-life is planned for adults with CHD. Future studies using qualitative analyses and survey methodology are needed to optimize the management of end-of-life care. Type of funding sources: Public grant(s) – EU funding. Main funding source(s): Research Foundation Flanders, European Society of Cardiology, Koning Boudewijnstichting, National Foundation on Research in Pediatric Cardiology, Swedish Research Council for Health, Working Life and Welfare-FORTE
Publisher: Elsevier BV
Date: 10-2020
Publisher: Elsevier BV
Date: 02-2021
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 03-03-2020
Abstract: 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. 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). 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.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 04-12-2017
Publisher: MDPI AG
Date: 18-03-2023
Abstract: Amyotrophic lateral sclerosis (ALS) is characterized by progressive loss of upper and lower motor neurons. In 10% of patients, the disorder runs in the family. Our aim was to study the impact of ALS-causing gene mutations on cerebral glucose metabolism. Between October 2010 and October 2022, 538 patients underwent genetic testing for mutations with strong evidence of causality for ALS and 18F-2-fluoro-2-deoxy-D-glucose-PET (FDG PET), at University Hospitals Leuven. We identified 48 C9orf72-ALS and 22 SOD1-ALS patients. After propensity score matching, two cohorts of 48 and 21 matched sporadic ALS patients, as well as 20 healthy controls were included. FDG PET images were assessed using a voxel-based and volume-of-interest approach. We observed widespread frontotemporal involvement in all ALS groups, in comparison to healthy controls. The degree of relative glucose metabolism in SOD1-ALS in motor and extra-motor regions did not differ significantly from matched sporadic ALS patients. In C9orf72-ALS, we found more pronounced hypometabolism in the peri-rolandic region and thalamus, and hypermetabolism in the medulla extending to the pons, in comparison to matched sporadic ALS patients. Our study revealed C9orf72-dependent differences in glucose metabolism in the peri-rolandic region, thalamus, and brainstem (i.e., medulla, extending to the pons) in relation to matched sporadic ALS patients.
Publisher: Oxford University Press (OUP)
Date: 07-2022
DOI: 10.1093/EURJCN/ZVAC060.028
Abstract: Type of funding sources: Foundation. Main funding source(s): Research Foundation Flanders (to PM, EG, and LVB) European Society of Cardiology (Nursing Training Grant to LVB) Heart failure (HF) is a common cause of morbidity and mortality in patients with congenital heart disease (CHD). Although limited in scope, previous studies suggest that patients with heart failure follow a specific end-of-life trajectory with episodes of serious complications, which may impact the patterns of care as death approaches. The study aims to identify differences in characteristics and patterns of care in the last year of life in deceased CHD patients with and without HF. This retrospective study used data of deceased adult patients included in the BELgian COngenital heart disease Database combining Administrative and Clinical data (BELCODAC). To describe patterns of care in the last year of life, we captured information about hospitalisations, emergency department visits, and visits to the general practitioner using nomenclature codes. Heart failure was identified as having HF as cause of death and/or at least one prescription of a loop diuretic in the last year of life. Sensitivity analyses with a stricter definition for HF (HF as cause of death or ≥ 1 prescription of a loop diuretic combined with a prescription of digoxin, dopamine, dobutamine, other non-glycoside stimulants, metoprolol, bisoprolol, carvedilol, aldosterone antagonists, ACE inhibitors or ARBs) were performed as well. During the period 2007–2016, 390 adults with CHD died, of which 170 patients with HF (44%). Patients with HF were older, died more often due to a cardiovascular cause of death, and had more complex heart lesions, compared to patients without HF (Table 1). While the number of emergency department visits and hospitalisations in the last year was similar, patients with HF had almost twice as much monthly visits at the general practitioner in their last year of life (Table 1). As shown in Figure 1, the mean number of hospitalisations and emergency department visits increased in a similar fashion throughout the last year of life, but the pattern of general practitioner visits was substantially different for patients with and without HF. The sensitivity analyses, in which a stricter definition for HF was used, yield very similar results. In these analyses, the difference in mean monthly hospitalisations was also significant between the two groups. This study shows clinically important differences in characteristics and patterns of care of deceased patients with CHD with and without heart failure. Patients with HFhave different needs and should receive a tailored approach at the end of life. Future research is needed to understand these differences and investigate these patients' end-of-life care needs in more detail. Funding acknowledgments: This work was supported by Research Foundation Flanders European Society of Cardiology the King Baudouin Foundation the National Foundation on Research in Pediatric Cardiology and the Swedish Research Council for Health, Working Life and Welfare-FORTE.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 17-05-2017
DOI: 10.1212/WNL.0000000000004028
Abstract: 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. 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. 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 (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 R 2 = 0.77). We found no significant difference between the accuracy of CT perfusion and ASPECTS to predict hyperacute MRI lesion volume in ischemic stroke.
Publisher: Oxford University Press (OUP)
Date: 07-2021
DOI: 10.1093/EURJCN/ZVAB060.029
Abstract: Type of funding sources: Public grant(s) – National budget only. Main funding source(s): This work was supported by Research Foundation Flanders [grant numbers G097516N to PM, 12E9816N to EG and 1154719N to LVB] the King Baudouin Foundation (Fund Joseph Oscar Waldmann-Berteau & Fund Walckiers Van Dessel) the National Foundation on Research in Pediatric Cardiology and the Swedish Research Council for Health, Working Life and Welfare -FORTE (grant number STYA-2018/0004). BELCODAC consortium Although recent position papers have discussed and advocated for the integration of palliative care in the treatment course of adults with congenital heart defects (CHD), empirical studies reporting to what extent palliative care is currently provided, are still lacking. (1) To explore the current provision of palliative care to adults with CHD in the last 6 months of their life and (2) to describe the profile of patients who received palliative care. In this retrospective study, data of deceased adult patients included in the BELgian COngenital heart disease Database combining Administrative and Clinical data (BELCODAC) were analysed. Palliative care provision (i.e., admission to palliative care ward, or palliative care at home) was identified using nomenclature codes. The level of anatomical complexity was based on the Bethesda classification. Descriptive analyses were performed. During the period 2006-2016, 480 adults with CHD died (mean age: 54.4y 45% simple CHD, 43% moderate CHD, 12% complex CHD). We identified that 75 patients (16%) had at least one nomenclature code linked to palliative care in the last 6 months of their life. More specifically, 16 patients were admitted to an inpatient palliative care service and 67 patients received palliative care at home. Of the patients who received palliative care at home, 40 patients were cared for by a multidisciplinary team specialized in palliative care provision and 59 patients received care from nurses and/or general practitioners while being recognized as a palliative patient. A total of 8 patients received palliative care both at the inpatient palliative care service and at home. Of the 75 patients receiving palliative care, 44 (59%) had a neoplasm as the primary cause of death and a cardiac cause of death was reported for 10 patients (13%) (see Figure 1). The mean age of patients receiving palliative care was 57.9 years. Most patients receiving palliative care had a simple CHD (n = 40 53%), 29 patients (39%) had a moderate lesion, and 6 patients (8%) had a complex lesion. That means that, respectively, 19%, 14%, and 11% of all deceased patients with a simple, moderate, and complex heart lesion received palliative care. This is the first exploratory study on palliative care in adults with CHD. About one in six patients who died received palliative care. Of those who received palliative care, the cause of death was in most cases of a non-cardiac nature. Further research is needed to investigate the care trajectories and care needs of adults with CHD in the last months of life. Figure 1. Causes of death of adults with CHD who received palliative care in the last 6 months of life (n = 75).
Publisher: Elsevier BV
Date: 07-2019
DOI: 10.1016/J.CJCA.2019.04.018
Abstract: 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. 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. 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). 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.
Publisher: Elsevier BV
Date: 09-2021
Publisher: Computers, Materials and Continua (Tech Science Press)
Date: 2020
Publisher: Springer Science and Business Media LLC
Date: 09-04-2021
Publisher: Oxford University Press (OUP)
Date: 28-08-2022
DOI: 10.1093/EURHEARTJ/EHAC484
Abstract: Although life expectancy in adults with congenital heart diseases (CHD) has increased dramatically over the past five decades, still a substantial number of patients dies prematurely. To gain understanding in the trajectories of dying in adults with CHD, the last year of life warrants further investigation. Therefore, our study aimed to (i) define the causes of death and (ii) describe the patterns of healthcare utilization in the last year of life of adults with CHD. This retrospective mortality follow-back study used healthcare claims and clinical data from BELCODAC, which includes patients with CHD from Belgium. Healthcare utilization comprises cardiovascular procedures, CHD physician contacts, general practitioner visits, hospitalizations, emergency department (ED) visits, intensive care unit (ICU) admissions, and specialist palliative care, and was identified using nomenclature codes. Of the 390 included patients, almost half of the study population (45%) died from a cardiovascular cause. In the last year of life, 87% of patients were hospitalized, 78% of patients had an ED visit, and 19% of patients had an ICU admission. Specialist palliative care was provided to 17% of patients, and to only 4% when looking at the patients with cardiovascular causes of death. There is a high use of intensive and potentially avoidable care at the end of life. This may imply that end-of-life care provision can be improved. Future studies should further examine end-of-life care provision in the light of patient’s needs and preferences, and how the healthcare system can adequately respond.
No related grants have been discovered for Fouke Ombelet.