Illness perceptions of adults with congenital heart disease and their predictive value for quality of life two years later.

BACKGROUND: To improve patients' quality of life (QoL) we need to identify modifiable determinants, such as illness perceptions. Patients' illness perceptions are known to regulate emotional responses and health-behaviour. Illness perceptions comprise several components: consequences, control, coherence, changeability and emotional representations. AIMS: To examine (a) the relation between patient characteristics and illness perceptions, and (b) the independent predictive value of illness perceptions for future QoL. METHODS: A longitudinal study in 845 patients with congenital heart disease was conducted. Patients completed three questionnaires: the IPQ-R (illness perceptions) and two years later the SF-36 and TAAQOL-CHD (QoL). Linear regression analyses were performed relating illness perceptions to patient characteristics (sex, age, disease complexity and functional status) and QoL. RESULTS: Patients with a complex defect or poor functional status reported poor illness perceptions. Independent of patient characteristics, poor illness perceptions (i.e. a strong belief that the illness has severe consequences; a weak belief that you have a coherent illness understanding and that the illness can be controlled by treatment; and a strong belief that the illness is changeable and causes negative emotions) were predictive of future QoL. CONCLUSION: Illness perceptions independently predict QoL, suggesting that QoL may be improved by altering patients' beliefs about their illness. For example, increasing patients' knowledge regarding their disease and informing them about treatment opportunities may enhance their QoL.

The perspective of patients with congenital heart disease: does health care meet their needs?

OBJECTIVE: A first step in the delivery of tailored care is answering the following question: does health care meet the needs of patients? Therefore patients' perspective on health care use and their needs was examined. The design used was cross-sectional questionnaire study. PATIENTS: A total of 1109 adult congenital heart defect (CHD) patients attending one of eight Dutch hospitals were randomly selected from a national database (10% of all registered patients). MAIN OUTCOME MEASURES: Patient reported questionnaires on in- and outpatient health care use during the past year and need for additional care. RESULTS: A total of 66% and 40% of patients had contact with their cardiologist and general practitioner, respectively. Six to 10 percent were hospitalized, operated upon, or visited the emergency room. For the majority, the amount of contact was sufficient. Most patients indicated that the communication skills and expertise of the cardiologist and general practitioner were sufficient, and health care improvements were not necessary. Frequent health care users had a poor functional status and frequent contact with their cardiologist and general practitioner. Patients who want more contact with their cardiologist rated the communication skills of the cardiologist as insufficient. CONCLUSIONS: For most patients, the amount and quality of care are both sufficient. Patients who rate the communication skills of the cardiologist as insufficient have need more contact. In addition to the recommended training program as described in the American College of Cardiology/American Heart Association (ACC/AHA) and European Society of Cardiology (ESC) guidelines, we recommend the incorporation of communication training. This is the first study to provide insight into health care use and needs of CHD patients in countries with a compulsory health insurance system from the patient perspective.

Percutaneous transcatheter closure of atrial septal defects: initial single-centre experience and follow-up results. Initial experience with three-dimensional echocardiography.

OBJECTIVE: Registry to report our single-centre experience in closing defects of the atrial septum. METHODS: Between 1996 and 2001, transcatheter device closure of significant atrial septal defects was performed in 32 adults (mean age 45.1 years, range from 15 to 76 years), using different device types. Six patients had a patent foramen ovale (PFO) and 26 patients had a secundum atrial septal defect (ASD II). Defects were selected by means of two-dimensional transoesophageal echocardiography (2D TOE). For 12 defects additional three-dimensional transoesophageal echocardiography (3D TOE) was performed. RESULTS: Mean balloon-stretched diameter was 19.3 mm (range from 11 to 24 mm). A device was successfully placed in all PFO patients (100%) without complications at follow-up. Successful immediate device placement occurred in 24 out of 26 ASD patients. Two immediate placement failures, 1 device embolisation and 1 device non-fixation, occurred and required urgent surgery. There was 1 patient with pericardial effusion after the intervention, requiring pericardiocentesis. Three late placement failures occurred: 2 device embolisations and 1 device dislocation. Clinical success after 3 to 6 months follow-up, defined as the absence of shunt or small shunt, was achieved in all 6 PFO patients and in 21 out of 23 ASD patients (1 device embolisation, requiring surgery, occurred before follow-up was completed). Two patients with significant shunt, 1 late device dislocation and 1 late device embolisation, underwent elective surgery. For patient selection, 3D TOE proved useful in the evaluation of large and/or complex defects. CONCLUSION: Transcatheter device closure of carefully selected atrial septal defects is an alternative to surgery. Although the results are promising, surgical back-up is often needed.

Angioplasty for coarctation in different aged patients.

BACKGROUND: Differences in the indication and outcome of balloon angioplasty for coarctation in children and adults have not been elucidated sufficiently. The results of balloon angioplasty for coarctation are compared between pediatric and adult age groups. METHODS: Balloon angioplasty for coarctation of the aorta was performed in 85 patients who were classified according to age and native coarctation/recoarctation. Groups A (patients aged <16 years, n = 32) and B (patients aged > or =16 years, n = 17) included patients with native coarctations. Groups rCoA A (patients aged <16 years, n = 33) and rCoA B (patients aged > or =16 years, n = 3) included patients with recoarctations. Follow-up included 2-dimensional Doppler scanning echocardiography and additional angiography or magnetic resonance imaging. Gradient reductions in groups were compared by use of the independent-samples t test. Kaplan-Meier and log-rank analyses were performed as a means of comparing long-term outcome. RESULTS: No mortality occurred. Immediate success was equal in groups A, B, and rCoA A (94%). Dilatation was unsuccessful in 2 patients in group rCoA B. Pressure gradients decreased 23 mm Hg in group A, 31 mm Hg in group B, 18 mm Hg in group rCoA A, and 11 mm Hg in group rCoA B. Pressure gradient drops, compared between groups A and B, showed a significant difference (P <.001). The length of hospital stay ranged from 12 to 48 hours. The period of follow-up ranged from 6 months to 12 years (mean, 4.9 years). Kaplan-Meier curves of groups A and B are not different, as determined by means of log-rank analysis. No aneurysm formation was encountered. CONCLUSIONS: The results of balloon angioplasty for native coarctation in both selected children and adults are excellent. In recoarctation, we recommend balloon angioplasty in the pediatric patients.