Kristien Van Deyk

Quality of life and health status in adults with congenital heart disease: a direct comparison with healthy counterparts.

Introduction Despite having increased life expectancy, patients with congenital heart disease are sometimes presumed to have a diminished quality of life. This study therefore assessed the quality of life and perceived health of adults with congenital heart disease and compared these two measures with those reported by healthy control subjects. Methods Using a comparative study design, we examined quality of life and perceived health in 404 patients who were matched for age, sex, educational level, and employment status with 404 healthy counterparts. Quality of life was measured using a linear analog scale and the Satisfaction with Life Scale. Problems and concerns relevant to patients’ quality of life were assessed by the Congenital Heart Disease-TNO-AZL Adult Quality of Life scale. Perceived health was also assessed with a linear analog scale. Results Patients perceived their quality of life (median linear analog scale score 80; median Satisfaction with Life Scale score 28) and health status to be good (median linear analog scale 80). Quality of life was significantly better in patients with congenital heart disease than in healthy peers, with a mean standardized difference of 0.22 on the linear analog scale and 0.34 on the Satisfaction with Life Scale. No group difference was found for perceived health. Problems and concerns in adults with congenital heart disease overlapped to a large extent with those identified by control subjects. Patients reported significantly higher distress scores for 16 of 77 items, whereas control subjects perceived more distress for 20 items. Conclusion Adults with congenital heart disease perceived their quality of life to be better than did their healthy counterparts. This finding refutes the presumed lower quality of life in patients with cardiac anomalies. Eur J Cardiovasc Prev Rehabil 13:407-413

Prevalence of cardiovascular risk factors in adults with congenital heart disease

Background Empirical evidence indicates that patients with congenital cardiac anomalies may be prone to developing coronary heart disease. Although primary prevention of ischaemic heart disease in patients with congenital heart defects is important, data on the prevalence of cardiovascular risk factors in these patients are not available. The aims of this study are therefore to describe the prevalence of risk factors for coronary heart disease in a large sample of adults with congenital cardiac anomalies, and compare this with the prevalence in the general population. Design A retrospective analysis of computerized patient records. Methods At our outpatient clinic, all patients are examined by an advanced practice nurse and a congenital heart disease cardiologist. Data on smoking behaviour, sports participation, blood pressure, body mass index, and the diagnosis of diabetes are recorded systematically. Data on the general population were derived from national health surveys. Results In a 4-year period, we collected data on 1976 individual patients. Male patients had a significantly higher prevalence of smoking and elevated blood pressure, whereas women were less engaged in sports activities and were more often obese. In comparison with the general population, our patients reported less smoking and more participation in sports, but presented more often with hypertension or diabetes. Only 20.4% of men and 21.0% of women have a fully heart-healthy lifestyle, as they presented without any risk factor. Conclusion A substantial number of patients had one or more cardiovascular risk factors. Therefore, primary prevention by strengthening educational efforts becomes critically relevant in patients with congenital heart disease, to avoid the additional burden of coronary events in this growing population of patients.

Transfer of Adolescents With Congenital Heart Disease From Pediatric Cardiology to Adult Health Care An Analysis of Transfer Destinations

OBJECTIVES The transfer of adolescents with congenital heart disease from pediatric to adult care was examined. The aims were to investigate where these adolescents received adult-centered care, to determine the proportion of patients with no follow-up and with no appropriate follow-up after leaving pediatric cardiology, and to explore the determinants of no follow-up and no appropriate follow-up. BACKGROUND Even after successful treatment, many patients require lifelong cardiac surveillance by specialized practitioners. Although guidelines describe the most appropriate level of follow-up, this is not always implemented in practice. METHODS A descriptive, observational study was performed, including 794 patients with congenital heart disease examined and/or treated at a tertiary care center. RESULTS Overall, 58 of the 794 patients included (7.3%) were not in follow-up. Cessation of follow-up was found in 2 of 74 patients with complex (2.7%), 31 of 448 patients with moderate (6.9%), and 25 of 272 patients with simple (9.2%) heart defects. Moreover, 684 patients (86.1%) remained in specialized follow-up. According to international guidelines, 81 patients (10.2%) did not receive the minimal level of cardiac care. Multivariable logistic regression revealed that male sex and no prior heart surgery were associated with no follow-up. Male sex, no prior heart surgery, and greater complexity of congenital heart disease were associated with no appropriate level of cardiac follow-up. CONCLUSIONS The proportion of patients in this study lost to follow-up was substantially lower than in other Western countries. Because only patient-related factors were examined with respect to loss to follow-up, further examination of patient-related, hospital-related, and healthcare-related determinants of lack of follow-up is needed.

Percutaneous closure of a patent foramen ovale: single-centre experience using different types of devices and mid-term outcome.

Introduction — Patent foramen ovale (PFO) has been identified as a source of paradoxical embolism and cryptogenic stroke. Low recurrence rates of ischaemic stroke after percutaneous closure have been described.We report our single-centre experience using four different types of devices. Methods — All patients, who underwent a percutaneous PFO closure in the University Hospitals Leuven between February 1999 and December 2003, were included. The primary end point was defined as reoccurrence of stroke, transient ischaemic attack (TIA), or a peripheral thrombo-embolic event.The periprocedural and mid-term complications were reported. Results — One-hundred and twelve patients, mean age 52.1 ± 12.5 years (63 men/49 women), were included in the study. Indications for closure were cryptogenic stroke (91.9%), peripheral embolism (4.5%), obligate right-to-left shunt in Ebstein anomaly (1.8%), platypnoea syndrome or brain abscesses (both 0.9%).The Cardioseal/Starflex® was used in 12, the Amplatzer PFO occluder® in 35, the PFOStar/CardiaStar® in 64, and the Helex® in one patient.The primary end point occurred in 1.8% for stroke and 2.8% for TIA during a median follow-up of 1.9 years, range 4.9 years. Periprocedural complications were dislocation of the device (0.9%), transient arrhythmias (15.5%), aspiration pneumonia (0.9%), inguinal haematoma (3.6%), and an allergic reaction to medication (1.8%). Mid-term complications were perforation of the device (0.9%), persistent transient arrhythmias (6.3%) and thrombus formation on the device (0.9%). No significant differences in outcome or the occurrence of any type of complication could be documented between the different types of devices. Conclusion — Percutaneous PFO closure seems to be a highly efficient and relatively safe procedure, independent of the type of device used for closure.

Implementation of Transition Programs can Prevent Another Lost Generation of Patients with Congenital Heart Disease

Congenital heart disease is the most frequently occurring birth defect. To date, more than 90% of the children born with a heart defect reach adulthood. Since many patients are prone to residua and sequelae, lifelong specialized care is required. However, studies indicate that about one-half to three-quarters of the patients are lost to follow-up when they have grown up. This has resulted in a virtual lost generation. Lapse of care is associated with significant morbidity. Therefore, implementation of strategies to prevent patients from failing to continue regular follow-up is critical. It is argued that transition programs that inform patients about the rationale for ongoing follow-up and that teach them how to navigate the medical system can avoid another lost generation.

Profile of adults with congenital heart disease having a good, moderate, or poor quality of life: a cluster analytic study.

Aims: The purpose of the study was to assess the profile of adult patients with congenital heart disease who reported a good, moderate, or poor quality of life. Methods: We conducted a secondary analysis of data from a large-scale quality-of-life study that included 627 patients. Demographic and clinical variables were retrieved from the medical records and functional status from patient interviews. Overall quality of life was measured using a Linear Analogue Scale. Using K-means cluster analysis, we categorized subjects into a 3-cluster solution: good, moderate, or poor quality of life. Results: Four hundred ninety patients (78.1%) clustered into the good quality-of-life category; 126 patients (20.1%) clustered into the moderate quality-of-life category; and 11 patients (1.8%) clustered into the poor quality-of-life category. Poorer quality of life was associated with lower educational level, unemployment or disability, associated syndromes, instability of the heart disease, and a poorer functional status. Conclusion: Over three-quarters of the patients had a good quality of life, whereas only a small proportion had a poor quality of life. Specific demographic and clinical characteristics associated with a poor quality of life could assists in identifying patients at risk for developing a poor quality of life.

Patient knowledge of and adherence to oral anticoagulation therapy after mechanical heart-valve replacement for congenital or acquired valve defects

OBJECTIVE This study sought to determine (1) the level of knowledge that mechanical heart-valve patients (because of congenital heart disease or acquired heart-valve defects) have about oral anticoagulation therapy; and (2) to what extent these patients adhere to this therapy. METHODS This descriptive, cross-sectional study included 57 patients. Knowledge was measured using the Knowledge of Oral Anticoagulation Tool. Adherence was assessed with a visual analogue scale and the Swiss HIV Cohort Study Adherence Questionnaire. RESULTS Patients poorly understood symptoms relevant to over-anticoagulation and the effects of alcohol and vitamins on oral anticoagulants. The knowledge level of patients with congenital heart disease and acquired heart-valve defects did not differ significantly. Three-quarters of patients claimed to be 100% adherent to oral anticoagulant therapy. CONCLUSION Most patients lack knowledge about oral anticoagulants, and one fourth of patients do not fully adhere to therapy.

Effectiveness of structured patient education on the knowledge level of adolescents and adults with congenital heart disease

Background: Patients with congenital heart disease (CHD) have poor understanding of their heart condition, treatment and prevention of complications. To improve their level of health-related knowledge, a structured education program was implemented in the adult congenital heart disease program. This study aimed (a) to evaluate the level of knowledge of patients who received structured CHD education as compared to patients who did not receive this education; (b) to explore if the provision of structured education is an independent determinant of knowledge; and (c) to evaluate whether patients who received structured education reached the educational target (>80% correct answers). Methods and results: A total of 317 patients were included: 226 in the education group, and 91 in the comparison group. Knowledge was assessed using the ‘Leuven Knowledge Questionnaire for Congenital Heart Disease’. The mean total knowledge score in the education group (57%) was significantly higher as compared to the comparison group (43%) (p<0.001). However, only 24 patients (11%) in the education group reached the educational target of the program. After adjusting for patient’s age, educational level and disease complexity, hierarchical multivariable linear regression analysis showed that the provision of structured CHD education was an independent determinant of higher levels of knowledge. Conclusion: A structured education program was associated with a higher level of knowledge. However, the educational target for sufficient knowledge was reached in a very limited number of patients. Hence, continuous efforts in educating patients and developing alternative education methods are needed.

Percutaneous transcatheter ventricular septal defect closure in adults with Amplatzer septal occluders

Background — The interest in transcatheter ventricular septal defect (VSD) closure is continuously growing. Therefore, we report our experience in perimembranous (Pm) and postinfarction (Pi) VSD closure. Methods — All patients, older than 16 years, were selected from a data base, in which Pm and Pi VSDs were registered.The patients’ files were reviewed until the most recent follow-up date. Results — Nine (7 male, 37.4 ± 12.8 y) and 8 (6 male, 76.3 ± 6.2 y) patients underwent a Pm (group A) and Pi VSD (group B) closure, respectively. One female patient was treated for a posttraumatic VSD (26 y). In group A, 7 patients were closed with the Amplatzer perimembranous VSD occluder, one with the muscular VSD occluder, and one patient with the atrial septal defect occluder. All patients in group B were treated with the muscular VSD occluder. In the post-traumatic VSD an Amplatzer patent foramen ovale occluder was used. Device implantation was feasible in all, except in two patients with extremely large VSDs (one Pm and one Pi VSD).Total transcatheter closure or small residual leakage was achieved in 7/8 patients in group A, but one patient needed surgical VSD repair because of massive haemolysis, another patient died 9 months later. A small or moderate shunt was present immediately after the procedure in all patients of group B. No device-related complications were reported, but all, except one patient, died within 2 weeks after the procedure because of an extremely high co-morbidity (logistic Euroscore 70 ± 25%). Total closure was achieved in the post-traumatic VSD. Conclusion — Transcatheter closure of Pm and Pi VSD with Amplatzer septal occluders in adults is feasible and safe, but the post-procedural prognosis totally depends on the aetiology of the VSD and its co-morbidity.

Prevention of stroke by percutaneous left atrial appendage closure: Short term follow-up

Preliminary studies suggest that left atrial appendage (LAA) closure might be beneficial in the prevention of stroke in patients with atrial fibrillation (AF). We evaluated the preliminary clinical efficacy of percutaneous LAA closure using the PLAATO-device (ev3 Endovascular, Inc., North Plymouth, MN) and found that none of the patients suffered from thrombo-embolic events within a time period of 2 years after successful LAA closure. Therefore, we believe that percutaneous closure of the LAA might be a valuable technique for AF patients with contra-indications for or failure of oral anticoagulation to prevent thrombo-embolic events.