| 1. |
- Daelman, Bo, et al.
(author)
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Frailty and cognitive function in middle-aged and older adults with congenital heart disease
- 2024
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In: Journal of the American College of Cardiology. - : Elsevier. - 0735-1097 .- 1558-3597. ; 83:12, s. 1149-1159
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Journal article (peer-reviewed)abstract
- Background: Life expectancy of patients with congenital heart disease (CHD) has increased rapidly, resulting in a growing and aging population. Recent studies have shown that older people with CHD have higher morbidity, health care use, and mortality. To maintain longevity and quality of life, understanding their evolving medical and psychosocial challenges is essential.Objectives: The authors describe the frailty and cognitive profile of middle-aged and older adults with CHD to identify predictor variables and to explore the relationship with hospital admissions and outpatient visits.Methods: Using a cross-sectional, multicentric design, we included 814 patients aged ≥40 years from 11 countries. Frailty phenotype was determined using the Fried method. Cognitive function was assessed by the Montreal Cognitive Assessment.Results: In this sample, 52.3% of patients were assessed as robust, 41.9% as prefrail, and 5.8% as frail; 38.8% had cognitive dysfunction. Multinomial regression showed that frailty was associated with older age, female sex, higher physiologic class, and comorbidities. Counterintuitively, patients with mild heart defects were more likely than those with complex lesions to be prefrail. Patients from middle-income countries displayed more prefrailty than those from higher-income countries. Logistic regression demonstrated that cognitive dysfunction was related to older age, comorbidities, and lower country-level income.Conclusions: Approximately one-half of included patients were (pre-)frail, and more than one-third experienced cognitive impairment. Frailty and cognitive dysfunction were identified in patients with mild CHD, indicating that these concerns extend beyond severe CHD. Assessing frailty and cognition routinely could offer valuable insights into this aging population.
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| 2. |
- Arnaert, Stijn, et al.
(author)
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Heart failure related to adult congenital heart disease: prevalence, outcome and risk factors.
- 2021
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In: ESC heart failure. - : Wiley. - 2055-5822. ; 8:4, s. 2940-2950
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Journal article (peer-reviewed)abstract
- Information on the prevalence, outcome and factors associated with heart failure in patients with adult congenital heart disease (CHD) (ACHD-HF) is lacking. We aimed at assessing the prevalence and outcome of ACHD-HF, the variables associated with ACHD-HF, and the differences between major anatomical/pathophysiological ACHD subgroups.We included 3905 patients (age 35.4±13.2years) under active follow-up in our institution (last visit >2010). Outcome of ACHD-HF cases was compared with sex- and age-matched cases. Univariable and multivariable binary logistic regression with ACHD-HF diagnosis as a dependent variable was performed. Overall prevalence of ACHD-HF was 6.4% (mean age 49.5±16.7years), but was higher in patients with cyanotic CHD (41%), Fontan circulation (30%), and a systemic right ventricle (25%). All-cause mortality was higher in ACHD-HF cases when compared with controls (mortality rate ratio 4.67 (2.36-9.27); P=0.0001). In multivariable logistic regression analysis, age at latest follow-up [per 10years; odds ratio (OR) 1.52; 95% confidence interval (CI) 1.31-1.77], infective endocarditis (OR 4.11; 95%CI 1.80-9.38), history of atrial arrhythmia (OR 3.52; 95%CI 2.17-5.74), pacemaker implantation (OR 2.66; 95% CI 1.50-4.72), end-organ dysfunction (OR 2.41; 95% CI 1.03-5.63), New York Heart Association class (OR 9.28; 95% CI 6.04-14.25), heart rate (per 10bpm; OR 1.27; 95% CI 1.08-1.50), ventricular dysfunction (OR 3.62; 95% CI 2.54-5.17), and pulmonary hypertension severity (OR 1.66; 95% CI 1.21-2.30) were independently related to the presence of ACHD-HF. Some variables (age, atrial arrhythmia, pacemaker, New York Heart Association, and ventricular dysfunction) were related to ACHD-HF in all anatomical/physiological subgroups, whereas others were not.ACHD-HF is prevalent especially in complex CHD and is associated with poor prognosis. Our data provide insight in the factors related to ACHD-HF including differences between specific anatomical and physiological subgroups.
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| 3. |
- Denayer, Nathalie, et al.
(author)
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Comparison of risk stratification models for pregnancy in congenital heart disease.
- 2021
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In: International journal of cardiology. - : Elsevier BV. - 1874-1754 .- 0167-5273. ; 323, s. 54-60
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Journal article (peer-reviewed)abstract
- Pregnancy in women with congenital heart disease (CHD) is associated with increased risk for maternal cardiac complications. Several risk stratification models are used to predict adverse cardiac outcome in women with CHD who become pregnant. This study was set up as an exploratory study to provide a head-to-head comparison of the 4 most commonly used models: CARPREG, CARPREG II and ZAHARA risk scores and mWHO risk classification.We randomly selected 100 women from the database of paediatric and congenital heart disease of the University Hospitals Leuven. Individual pregnancy risk scores were retrospectively calculated and summarized in a weighted average risk for each risk stratification model. To evaluate accuracy of each model, the weighted average risk was plotted against the actual observed number of "cardiac events" as defined in the respective risk models. Maternal adverse cardiac events occurred in 8% of our study population. Weighted average risks were plotted versus the observed number of events for each model: 10.1% versus 4.0% for CARPREG, 8.6% versus 5.0% for CARPREG II, 11.1% versus 8.0% for ZAHARA and 12.4% versus 8.0% for the mWHO classification.All risk models overestimated maternal cardiac risk. The ZAHARA risk model appeared to be a closer reflection of maternal risk in our cohort of CHD patients. More research on a larger study population is needed.
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| 4. |
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| 5. |
- Van Bulck, Liesbet, et al.
(author)
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Rationale, design and methodology of APPROACH-IS II: International study of patient-reported outcomes and frailty phenotyping in adults with congenital heart disease.
- 2022
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In: International journal of cardiology. - : Elsevier BV. - 1874-1754 .- 0167-5273. ; 363, s. 30-39
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Journal article (peer-reviewed)abstract
- In recent years, patient-reported outcomes (PROs) have received increasing prominence in cardiovascular research and clinical care. An understanding of the variability and global experience of PROs in adults with congenital heart disease (CHD), however, is still lacking. Moreover, information on epidemiological characteristics and the frailty phenotype of older adults with CHD is minimal. The APPROACH-IS II study was established to address these knowledge gaps. This paper presents the design and methodology of APPROACH-IS II.APPROACH-IS II is a cross-sectional global multicentric study that includes Part 1 (assessing PROs) and Part 2 (investigating the frailty phenotype of older adults). With 53 participating centers, located in 32 countries across six continents, the aim is to enroll 8000 patients with CHD. In Part 1, self-report surveys are used to collect data on PROs (e.g., quality of life, perceived health, depressive symptoms, autonomy support), and explanatory variables (e.g., social support, stigma, illness identity, empowerment). In Part 2, the cognitive functioning and frailty phenotype of older adults are measured using validated assessments.APPROACH-IS II will generate a rich dataset representing the international experience of individuals in adult CHD care. The results of this project will provide a global view of PROs and the frailty phenotype of adults with CHD and will thereby address important knowledge gaps. Undoubtedly, the project will contribute to the overarching aim of improving optimal living and care provision for adults with CHD.
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| 6. |
- Conings, Nele, et al.
(author)
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Biomarkers in transposition of the great arteries after arterial switch operation: A pilot trial with deep phenotyping
- 2024
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In: International Journal of Cardiology. - 0167-5273 .- 1874-1754. ; 397
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Journal article (peer-reviewed)abstract
- Introduction: Transposition of the great arteries (TGA) is a cyanotic congenital heart defect for which the arterial switch operation (ASO) is the preferred surgical repair. This study wanted to investigate whether a panel of biomarkers could identify morphologic as well as hemodynamic changes obtained by cardiac magnetic resonance (CMR). Methods: Forty-four adult patients were included. Blood samples were collected to measure a broad range of biomarkers (galectin-3, ST2, GDF-15, PINP, ICTP, PIIINP, IGF-1, NT-proBNP, and hs-Tn). CMR was performed at rest and during exercise to assess cardiac function and morphology. Explorative statistics were performed between biomarker levels and CMR findings. Results: All patients were asymptomatic. While galectin-3, GDF-15, and NT-proBNP levels were within normal ranges, increased ST2, PINP, PIIINP, and ICTP levels were found in 20.5%, 34.1%, 45.5%, and 27.3% of patients, respectively. Moreover, 3 and 2 patients, respectively, showed elevated IGF-1 and hs-Tn levels. Although the ejection fraction of both ventricles was within normal limits, impaired cardiac reserve was found in 20 and 25% of patients for left and right ventricle, respectively. CMR revealed no evidence of diffuse interstitial fibrosis, while 4 patients showed focal ischemic scarring. However, no significant associations between serum biomarkers and CMR data could be detected. Conclusion: The results suggest that in asymptomatic ASO-repaired TGA patients serum level biomarkers are elevated and that this increase is not associated with morphological changes nor with a decreased cardiac reserve. Further study with larger sample sizes is required to draw conclusions with greater confidence.
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| 7. |
- Daene, M, et al.
(author)
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Outcome of Down patients with repaired versus unrepaired atrioventricular septal defect
- 2023
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In: International Journal of Cardiology Congenital Heart Disease. - : Elsevier BV. - 2666-6685. ; 12
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Journal article (peer-reviewed)abstract
- Background and aims Patients with Down Syndrome (DS) are frequently born with an atrioventricular septal defect (AVSD). Surgical repair of the defect aims to minimize mortality and morbidity. However, a surgical intervention, specifically in DS patients, is not without risk and a subgroup of patients underwent only conservative non-surgical treatment. Outcome data of these different approaches are scarce. The aim of this retrospective study was to compare the long-term outcome of DS patients with and without surgery for AVSD. Methods DS patients registered with AVSD in the hospital's database from January 1980 till December 2020 were selected. Patient characteristics, peri-operative if appropriate, and follow-up data were obtained from the medical files. Results In total, 72 unrepaired (36 male, 50%) and 134 repaired patients (61 male, 46%) were included. After a maximum of 60 years of follow-up, the all-cause mortality was 45.8% and 17.1%, respectively. Thirty-six percent and 13%, respectively, were labeled as non-cardiovascular death. Mean survival time for unrepaired AVSD was 40.7 years (95% CI 36.1–45.2) and for repaired AVSD 38.5 years (95% CI 35.3–41.6) (Log rank p = 0.465). However, the survival rate 35 years after birth was 62.1% for unrepaired patients versus 81.7% for repaired patients. Mortality rates were the highest the first months after surgical repair. Conclusions The mean survival rate of Down patients, born with an AVSD, did not differ between repair or not. However, long-term survival rate was higher in patients who underwent surgical repair. Mortality was highest the first months after surgery.
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| 8. |
- Erard, Margot, et al.
(author)
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Left atrial strain in patients after arterial switch operation for transposition of the great arteries
- 2023
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In: Acta Cardiologica. - 0001-5385 .- 0373-7934.
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Journal article (peer-reviewed)abstract
- Background: Left atrial (LA) strain, comprising LA reservoir, conduit and contractile function could add mechanistic information of patients after arterial switch operation (ASO) for transposition of the great arteries (TGA). ASO patients might have abnormal ventriculoarterial coupling, which makes them vulnerable to left ventricle (LV) dysfunction and results in reduced exercise capacity. This explorative study aimed to evaluate the relation between LA strain, atrial size, ventricular function, and exercise data obtained by cardiopulmonary exercise testing (CPET). Methods: In a cohort of 44 patients (71% male, mean age 25 ± 4 years) LA strain was measured using transthoracic speckle-tracking echocardiography. Further assessment involved standard echocardiography, CPET evaluation, and blood sampling. LA strain values were compared to normal values. Correlations were calculated. Regression analysis with all strain variables to the CPET data was performed. Results: LA reservoir, conduit and contractile strain were normal in 30%, 89% and 50% of the patients, respectively. LA reservoir/contractile strain correlated to LV ejection fraction (ρ 0.310/−0.159, respectively) and LA reservoir/conduit strain correlated to the LA volume index (ρ 0.336/−0.357, respectively). None of the individual LA strain parameters were associated with the CPET variables. In multivariate regression analysis, LA contractile strain was significantly associated with the percentage of predicted maximal heart rate (β − 2.555). Conclusions: These data suggest that in TGA patients after ASO repair LA strain is impaired and correlates with LA size and LV function. However, impaired LA strain wasn’t associated with the standard CPET parameters. As such, clinical significance needs to be further unravelled.
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| 9. |
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| 10. |
- Gabriels, Charlien, et al.
(author)
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Serial pulmonary vascular resistance assessment in patients late after ventricular septal defect repair.
- 2019
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In: International journal of cardiology. - : Elsevier BV. - 1874-1754 .- 0167-5273. ; 282, s. 38-43
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Journal article (peer-reviewed)abstract
- The long-term evolution of pulmonary vascular resistance (PVR) after ventricular septal defect (VSD) repair is unknown. This study serially evaluated resting and exercise PVR after VSD repair in childhood.Patients were enrolled from the outpatient Adult Congenital Heart Disease clinic of the University Hospitals Leuven and compared to age- and gender-matched controls. Participants underwent resting and exercise echocardiography and cardiopulmonary exercise testing at baseline and follow-up. Total PVR was calculated as the ratio of mean pulmonary artery pressure (mPAP) to cardiac output (CO). The slope of the mPAP-CO curve (exercise PVR) was obtained using linear regression analysis.Twenty-seven patients (mean age 31±7years, 70% male) and 18 controls were included. At baseline, patients had larger right ventricular (RV) end-diastolic areas (10±2 vs 9±1cm2/m2, p=0.001) and lower tricuspid annular plane systolic excursion (TAPSE) (17 (17-19) vs 26 (22-28) mm, p<0.001). After 1.1 (1.0-1.5) years follow-up, similar differences in RV areas and TAPSE were found. Patients reached lower peak workload and cardiac index compared to controls at each time point. Peak total PVR was higher (Baseline: 2.7±0.8 vs 2.2±0.3mmHg/L/min, p=0.005; Follow-up: 2.9±0.9 vs 2.1±0.3mmHg/L/min, p<0.001) and the mPAP-CO slope was steeper (Baseline: 2.2±0.8 vs 1.7±0.3mmHg/L/min, p=0.008; Follow-up: 2.5±0.9 vs 1.6±0.3mmHg/L/min, p<0.001) in patients. The mPAP-CO slope in patients correlated inversely with peak oxygen uptake (R=-0.41 and-0.45, p=0.036 and 0.022, baseline and follow-up, respectively).Despite repair, VSD patients seem to show altered pulmonary hemodynamics and RV impairment at rest and exercise, supporting life-long follow-up.
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| 11. |
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| 12. |
- Maessen, Lenn, et al.
(author)
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Short-term Prognostic Value of Heart Failure Diagnosis in a Contemporary Cohort of Patients With Adult Congenital Heart Disease.
- 2023
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In: The Canadian journal of cardiology. - : Elsevier BV. - 0828-282X .- 1916-7075. ; 39:3, s. 292-301
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Journal article (peer-reviewed)abstract
- Heart failure (HF) is the primary cause of premature death in adult congenital heart disease (ACHD). This study aimed to describe the impact of a HF diagnosis on short-term prognosis and to investigate the added prognostic value of an HF diagnosis to the ACHD Anatomic and Physiologic classification (ACHD-AP).This study included 3995 patients followed in a tertiary care centre (last follow-up after January 1, 2010). Survival curves were plotted, and predictors of the primary end point (death, heart transplantation, or ventricular assist device [VAD]) were identified with the use of Cox proportional hazard models and compared with the use of Harrell's C-statistic.Mean age at baseline was 35.7 ± 13.3 years. The prevalence of ACHD-HF was 6.4%. During a median follow-up of 3.1 years (IQR 2.1-3.6 years), 27.3% of ACHD-HF patients reached the primary end point, compared with 1.4% of ACHD patients without HF. Event-free survivals were 78.3%, 61.9%, and 57.5% at 1, 3, and 5 years in ACHD-HF patients, compared with 99.3%, 98.3%, and 98.0% in ACHD patients without HF (P < 0.001). An HF diagnosis (HR 6.9, 95% CI 4.3-11.2) and the physiologic classification (HR 2.6, 95% CI 1.9-3.7) were independently associated with the primary end point. The addition of HF to the ACHD-AP classification yielded a Harrell's C-index of 0.8631, providing a significant improvement over the ACHD-AP classification alone (P= 0.0003).The risk of mortality, transplantation, or VAD is increased in ACHD-HF patients. An HF diagnosis appears to be a valuable prognostic marker in addition to the ACHD-AP classification.
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| 13. |
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| 14. |
- Moons, Philip, 1968, et al.
(author)
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The COVID-19 pandemic as experienced by adults with congenital heart disease from Belgium, Norway, and South Korea: impact on life domains, patient-reported outcomes, and experiences with care.
- 2022
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In: European journal of cardiovascular nursing. - : Oxford University Press (OUP). - 1873-1953 .- 1474-5151. ; 21:6, s. 620-629
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Journal article (peer-reviewed)abstract
- The coronavirus disease-2019 (COVID-19) pandemic poses significant challenges to many groups within societies, and especially for people with chronic health conditions. It is, however, unknown whether and how the pandemic has thus far affected the physical and mental health of patient populations. Therefore, we investigated how the pandemic affected the lives of adults with congenital heart disease (CHD), compared pre- and peri-pandemic patient-reported outcome measures (PROMs) and a patient-reported experience measure (PREM), and investigated whether having had COVID-19 impacted pre-/peri-pandemic differences of the PROMs and PREM.As part of the ongoing APPROACH-IS II project, we longitudinally surveyed 716 adults with CHD from Belgium, Norway, and South Korea. Pre-pandemic measures were administered from August 2019 to February 2020 and the peri-pandemic surveys were completed September 2020-April 2021. The majority of patients indicated that their social lives (80%), mental health (58%), and professional lives/education (51%) were negatively impacted by the pandemic. Patients felt worried (65%), were afraid (55%), reported the pandemic felt 'close' to them (53%), and were stressed (52%). However, differences between pre- and peri-pandemic scores on the PROMs and PREM were negligibly small (Cohen's d < 0.20). Across measures, 5.8-15.8% of patients demonstrated changes (improved or worsened scores) that exceeded the minimal clinically important difference. There were no difference-in-differences for PROMs and PREM between patients who did vs. did not have COVID-19.Although the COVID-19 pandemic has been disruptive in many ways, pre- to peri-pandemic changes in PROMs and PREM of adults with CHD were negligibly small.
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| 15. |
- Na, Inwon, et al.
(author)
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Absence from work or school in young adults with congenital heart disease: is illness identity associated with absenteeism?
- 2022
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In: European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology. - : Oxford University Press (OUP). - 1873-1953. ; 21:5, s. 491-498
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Journal article (peer-reviewed)abstract
- Absence from work or school in patients with congenital heart disease (CHD) is an understudied domain. Illness identity, which is the degree to which a chronic illness is integrated into one's identity, could be hypothesized to be a predictor for absenteeism. This study determined the proportion of young adults with CHD absent from work or school and examined if illness identity dimensions were related to absenteeism.In a cross-sectional study, we included 255 patients with CHD. Data on absence from work or school over the past 12 months were obtained using self-report. The Illness Identity Questionnaire was used, which comprises four illness identity dimensions: rejection, engulfment, acceptance, and enrichment. Linear models with doubly robust estimations were computed after groups were balanced using propensity weighting. Absence from work/school occurred in 69% of young adults with CHD. Absence because of CHD specifically was present in 15% of the patients. Engulfment was significantly related to both all-cause absence and absence for CHD reasons.Patients who strongly define themselves in terms of their heart disease were more likely to be absent from work or school than those who did not. If this finding can be confirmed in future research, it has the potential to be a target for intervention to influence work/school absence.
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| 16. |
- Santens, Béatrice, et al.
(author)
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Adverse functional remodelling of the subpulmonary left ventricle in patients with a systemic right ventricle is associated with clinical outcome.
- 2022
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In: European heart journal. Cardiovascular Imaging. - : Oxford University Press (OUP). - 2047-2412 .- 2047-2404. ; 23:5, s. 680-688
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Journal article (peer-reviewed)abstract
- Early recognition of adverse remodelling is important since outcome is unfavorable once patients with a systemic right ventricle (sRV) become symptomatic. We aimed assessing prognostic markers linked to short-term clinical evolution in this population.Thirty-three patients (76% male) with sRV (atrial switch repair for D-transposition of the great arteries and congenitally corrected transposition of the great arteries) underwent detailed phenotyping including exercise cardiac magnetic resonance and were followed over mean follow-up time of 3years. Mean age was 40±8 (range 26-57) years at latest follow-up. Adverse outcome was a composite of heart failure (HF) and tachyarrhythmia. Descriptive statistics and univariate cox regression analyses were performed. When compared with baseline: (i) most patients remained in New York Heart Association functional class I (76%), (ii) the degree of severity of the systemic atrioventricular valve regurgitation rose, and (iii) more electrical instability was documented at latest follow-up. Six (18%) of a total of 9 events were counted as first cardiovascular events (9% HF and 9% arrhythmia). NT-proBNP, oxygen pulse, left ventricle end-diastolic volume index (LVEDVi), and stroke volume index (SVi) of the subpulmonary left ventricle (LV) both in rest and at peak exercise were significantly associated with the first cardiovascular event.NT-proBNP was by far the best prognostic marker for clinical outcome. Adverse remodelling with increase of LVEDVi and SVi of the subpulmonary LV at rest and during exercise were associated with worse clinical outcome. We theorize that remodelling of the subpulmonary ventricle might be an early sign of a failing sRV circulation.
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| 17. |
- Santens, Béatrice, et al.
(author)
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Decreased cardiac reserve in asymptomatic patients after arterial switch operation for transposition of the great arteries.
- 2023
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In: International journal of cardiology. - 1874-1754. ; 388
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Journal article (peer-reviewed)abstract
- Exercise capacity is impaired in patients after arterial switch operation (ASO) for complete transposition of the great arteries. Maximal oxygen consumption is related with outcome.This study assessed ventricular function by advanced echocardiography and cardiac magnetic resonance (CMR) imaging at rest and during exercise, to determine exercise capacity in ASO patients, and to correlate exercise capacity with ventricular function as potential early marker of subclinical impairment.Forty-four patients (71% male, mean age 25±4years - range 18-40years) were included during routine clinical follow-up. Assessment involved physical examination, 12‑lead ECG, echocardiography, and cardiopulmonary exercise test (CPET) (day 1). On day 2 CMR imaging at rest and during exercise was performed. Blood was sampled for biomarkers.All patients reported New York Heart Association class I, the overall cohort had an impaired exercise capacity (80±14% of predicted peak oxygen consumption). Fragmented QRS was present in 27%. Exercise CMR showed that 20% of patients had abnormal contractile reserve (CR) of the left ventricle (LV) and 25% had reduced CR of the right ventricle (RV). CR LV and CR RV were significantly associated with impaired exercise capacity. Pathological patterns on myocardial delayed enhancement and hinge point fibrosis were detected. Biomarkers were normal.This study found that in some asymptomatic ASO patients electrical, LV and RV changes at rest, and signs of fibrosis are present. Maximal exercise capacity is impaired and seems to be linearly related to the CR of the LV and the RV. Therefore, exercise CMR might play a role in detecting subclinical deterioration of ASO patients.
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| 18. |
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| 19. |
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| 20. |
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| 21. |
- Stassen, Jan, et al.
(author)
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Covered stent placement for treatment of coarctation of the aorta: immediate and long-term results.
- 2021
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In: Acta cardiologica. - : Informa UK Limited. - 1784-973X .- 0001-5385 .- 0373-7934. ; 76:5, s. 464-472
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Journal article (peer-reviewed)abstract
- This study aimed to describe the safety and efficacy of covered stents in patients with coarctation of aorta (CoA) for immediate and long-term follow-up.Covered stents are increasingly being used in (re)CoA, mainly to reduce the risk of aortic wall injuries (AWI). However, limited data are available on intermediate and long-term outcome.In 89 patients (67.4% male) with a mean age of 23.9±15.8 (min max range 5.1-71.6) years were 102 covered stents implanted (January 2003 - December 2017). Short-term pre/post-implant hemodynamics and angiographic data were reported. Changes in blood pressure, the use of antihypertensive drugs and complications were recorded during follow-up.The procedural success rate was 100%. The mean invasive ascending-to-descending aorta systolic gradient under general anaesthesia decreased from 25±16mmHg to 4±7mmHg (p<0.001). After a mean follow-up time of 6.6±3.7years, there was a persistent improvement of the mean systolic blood pressure gradient between right arm and leg (-7±18 vs 38±24mmHg; p<0.001). A larger proportion of patients required antihypertensive medication (33.7% vs 50.0%, p=0.017) and needed ≥ 2 drugs (20.2% vs 27.4%, p=0.066) to control blood pressure. Long-term adverse events were found in 4.5% of patients [covered stent fracture (n=3), aneurysm formation (n=2)].Covered stent implantation for CoA is highly successful, safe and results in a persistent hemodynamic improvement in the immediate and long-term outcome. Lifelong follow-up with additional antihypertensive drug treatment is mandatory to maintain favourable hemodynamic results after stenting.Long-term follow-up data on covered stents in patients with coarctation of the aorta are scarce. A cohort of 89 patients was reviewed. The procedural implantation success rate was 100%. The invasive gradient decreased from 25±16mmHg to 4±7mmHg (p<0.001). After follow-up of 6.6±3.7years, there was a persistent improvement of the clinical systolic blood pressure gradient (-7±18 vs 38±24mmHg; p<0.001). However, a larger proportion of patients required antihypertensive medication (33.7% vs 50.0%, p=0.017). Covered stent implantation results in favourable hemodynamic effects, but lifelong follow-up with additional antihypertensive drug treatment is mandatory to maintain these results.
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| 22. |
- Troost, Els, et al.
(author)
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Advanced care planning in adult congenital heart disease: Transitioning from repair to palliation and end-of-life care.
- 2019
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In: International journal of cardiology. - : Elsevier BV. - 1874-1754 .- 0167-5273. ; 279, s. 57-61
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Journal article (peer-reviewed)abstract
- As a result of advances in pediatric care, the majority of patients born with congenital heart disease (CHD) survive into adulthood [1]. Effective transfer and transition programs assure that patients with CHD remain in follow-up and receive continuous holistic care. Unfortunately, adult patients with CHD carry residual lesions and sequelae putting them at risk for premature death related to re-interventions or complications; most commonly heart failure and arrhythmia [2]. The scientific adult CHD (ACHD) community has been working hard to identify variables related to worse outcomes, modifying those where possible in order to improve survival. Indeed, survival in adults with CHD has increased, but consequently, on top of CHD-related complications, patients are increasingly exposed to the standard cardiovascular risk factors. Therefore, a program for lifelong coaching on health behavior and life style management becomes indispensable. More emerging is that a substantial number of patients, in particular those with complex heart defects, will eventually end up in a stage with hardly any medical or interventional options left. Our healthcare provision has to be prepared to organize care for this specific group of patients who will die prematurely and require the timely development and establishment of advanced care planning. Advanced care planning should preferentially be set-up in expert CHD centers. The long-lasting relationship in ACHD care with healthcare providers offers an excellent basis with regards to prognosis, advanced care planning and end-of-life issues.
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| 23. |
- Lu, Chun-Wei, et al.
(author)
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Heart Failure and Patient-Reported Outcomes in Adults With Congenital Heart Disease from 15 Countries
- 2022
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In: Journal of the American Heart Association. - : American Heart Association. - 2047-9980 .- 2047-9980. ; 11:9
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Journal article (peer-reviewed)abstract
- Background: Heart failure (HF) is the leading cause of mortality and associated with significant morbidity in adults with congenital heart disease. We sought to assess the association between HF and patient-report outcomes in adults with congenital heart disease.Methods and Results: As part of the APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease-International Study), we collected data on HF status and patient-reported outcomes in 3959 patients from 15 countries across 5 continents. Patient-report outcomes were: perceived health status (12-item Short Form Health Survey), quality of life (Linear Analogue Scale and Satisfaction with Life Scale), sense of coherence-13, psychological distress (Hospital Anxiety and Depression Scale), and illness perception (Brief Illness Perception Questionnaire). In this sample, 137 (3.5%) had HF at the time of investigation, 298 (7.5%) had a history of HF, and 3524 (89.0%) had no current or past episode of HF. Patients with current or past HF were older and had a higher prevalence of complex congenital heart disease, arrhythmias, implantable cardioverter-defibrillators, other clinical comorbidities, and mood disorders than those who never had HF. Patients with HF had worse physical functioning, mental functioning, quality of life, satisfaction with life, sense of coherence, depressive symptoms, and illness perception scores. Magnitudes of differences were large for physical functioning and illness perception and moderate for mental functioning, quality of life, and depressive symptoms.Conclusions: HF in adults with congenital heart disease is associated with poorer patient-reported outcomes, with large effect sizes for physical functioning and illness perception.
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| 24. |
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| 25. |
- Ombelet, Fouke, et al.
(author)
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Newly Developed Adult Congenital Heart Disease Anatomic and Physiological Classification: First Predictive Validity Evaluation.
- 2020
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In: Journal of the American Heart Association. - 2047-9980. ; 9:5
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Journal article (peer-reviewed)abstract
- 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.
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