Psychosocial functioning of the adult with congenital heart disease: a 20–33 years follow-up

E.H.M van Rijena,*, E.M.W.J Utensa, J.W Roos-Hesselinkb, F.J Meijboomb, R.T van Domburgb, J.R.T.C Roelandtb, A.J.J.C Bogersc and F.C Verhulsta

a The Department of Child and Adolescent Psychiatry, Sophia Children's Hospital, Erasmus MC – University Medical Center Rotterdam, P.O. Box 2060, 3000 CB Rotterdam, The Netherlands
b The Department of Cardiology, Thoraxcenter, Erasmus MC – University Medical Center Rotterdam, P.O. Box 2040, 3000 CA Rotterdam, The Netherlands
c The Department of Cardiothoracic Surgery, Thoraxcenter, Erasmus MC – University Medical Center Rotterdam, P.O. Box 2040, 3000 CA Rotterdam, The Netherlands

* Corresponding author. Tel.: +31-10-463-6671; fax: 31-10-463-6803
E-mail address: vanrijen{at}psys.azr.nl

Received 26 August 2002; revised 8 October 2002; accepted 9 October 2002


    Abstract
 Top
 Abstract
 1. Introduction
 2. Methods
 3. Results
 4. Discussion
 References
 
Aims Since knowledge about the psychosocial function of adult patients with congenital heart disease is limited, we compared biographical characteristics, and emotional and social functioning of these patients with that of the reference groups.

Methods and results Patients with congenital heart disease (, aged 20–46 years), belonging to five diagnostic groups, were subjected to extensive medical and psychological examination, 20–33 years after their first open heart surgery. All the patients were seen by the same psychologist, who examined their psychosocial functioning using a structured interview and questionnaires. The majority (78%)was living independently and showed favourable outcome regarding the marital status. Among married/cohabitant patients, 25–39-year-olds showed normal offspring rates. None of the 20–24-year-old patients had any children. The offspring rate dropped after the age of 40. The proportion of adult patients with a history of special education was high (27%). Accordingly, patients showed lower educational and occupational levels compared to reference groups. As regard to the emotional and social functioning (leisure-time activities), the sample showed favourable results.

Conclusions Overall, this sample of patients with congenital heart disease seemed capable of leading normal lives and seemed motivated to make good use of their abilities.

Key Words: Congenital heart disease • Congenital heart defect • Adult • Psychosocial • Psychological • Emotional


    1. Introduction
 Top
 Abstract
 1. Introduction
 2. Methods
 3. Results
 4. Discussion
 References
 
With the improvement of surgical techniquesover the last decades, increasing survival rates of patients with congenital heart disease are resulting in a new and growing patient population: adults with operated congenital heart disease. Medical professionals not only encounter specific medical needs of these patients, but also deal with unique psychosocial characteristics of adults with congenital heart disease. So far, however, little is known about the specific psychosocial problems of these patients when they enter adulthood, or the extent to which they succeed in having a normal life. This might impede medical professionals in tailoring treatment to the specific needs of the adultpatients with congenital heart disease, since these patients differ in many aspects from the well-known adult population with acquired cardiac diseases. The purpose of this study was to provide a clear and solid view on the biographical characteristics and current emotional and social functioning of the adults with congenital heart disease.

Both positive and negative outcomes have been documented regarding the educational and occupational functioning,1–6 living conditions, maritalstatus and offspring3–6 and emotional and social functioning.1,2,5,6 Deriving a complete picture of the adult patient with congenital heart disease from the existing studies is hampered by several factors, including small sample size, heterogeneous sample composition with regard to the type of congenital heart disease, different age ranges,low-response rate, non-standardised assessment procedures and variation in methods across various studies.

This study is part of a multidisciplinary cohort study of the patients with congenital heart disease, 20–33 years after their first heart surgery. This work concerns the second follow-up of the cohort and offers the unique possibility to study its current psychosocial functioning with a larger sample size and age range in adulthood compared to the previous works. It has been suggested that patients rate the negative impact of the congenital heart disease on their functioning as more serious as they grow older.6 However, very little information is available about how these patients function later in adulthood.

Therefore, the aims of the present study were: (1) to compare the biographical characteristics and emotional and social functioning of adults with operated congenital heart disease with that of reference groups; (2) to determine the relationship between cardiac diagnosis and the biographical characteristics and emotional and social functioning of the patients; and (3) to determine the effects of sex and age on biographical characteristics and on emotional and social functioning.


    2. Methods
 Top
 Abstract
 1. Introduction
 2. Methods
 3. Results
 4. Discussion
 References
 
2.1. Inclusion criteria
During the first follow-up of this study, which took place between 1989 and 1991, all consecutivepatients who underwent their first open heart surgery for congenital heart disease between 1968 and 1980 in the Erasmus MC, and who were younger than 15 years at the time of surgery, were eligible. This population is described in detail elsewhere.5

The target population of the second follow-up (2000–2001) consisted of 498 patients of the first follow-up. From the 498 patients, we excluded: 11 deceased patients (one with atrial septal defect, four with ventricular septal defect, two with tetralogy of Fallot, two with transposition of the great arteries and two with pulmonary stenosis), 26 untraceable patients and one patient who had undergone heart transplantation; 61 patients were also excluded because they belonged to a miscellaneous diagnostic group, consisting of a small number of patients with a variety of congenital heartdefects.

2.2. Patient sample
Of the remaining 399 eligible patients, 37 refused to participate. The present patient sample consisted of the remaining 362 adult patients (mean age: 30.2 years, age range 20–46 years), of which 194 were males and 168 were females. For biographical characteristics, data were available for all the patients, but not on all the topics. For emotional functioning, data were missing for 11 patients (eight were mentally retarded, one had a linguistic problem, two did not complete the questionnaire). For social functioning, data were missing for two persons (one was mentally retarded, one did not complete the questionnaire). The total number of patients answering each question(naire) are indicated in Tables 1–5. The overall response rate, corrected for deceased patients and persons lost to follow-up, was 90.7%.


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Table 1 Biographical characteristics of the patient sample

 
The total number of patients belonging todifferent diagnostic groups was: atrial septaldefect (ASD, ), ventricular septal defect (VSD, ), tetralogy of Fallot (ToF, ), transposition of the great arteries (TGA, ) and pulmonary stenosis (PS, ). The mean ages in these diagnostic groups were 32.8, 29.5, 30.2, 26.0 and 31.3 years, respectively. Medical history and physical condition of these patients at the time of the first follow-up are described elsewhere.7–10

For the biographical characteristics and social functioning, recent normative data were derived from the Netherlands Central Bureau of Statistics and, wherever available, were specified by age and sex.11 These recent reference data were derived from a variety of normative samples. Since these concerned very large samples, the representativeness for the average Dutch situation was warranted. Sample sizes of multiple and very large reference groups were not indicated in the Tables 1–5 to prevent confusion. For emotional functioning, the reference group consisted of 5686 adults (mean age, 34.6 years; age range 15–65 years;2730 males and 2956 females), derived from an extensive Dutch population study.12

2.3. Instruments
2.3.1. Biographical characteristics
A structured interview was designed to assess biographical variables, such as living conditions, offspring, education and marital and occupational status. Special education included schools for learning-disabled, mentally handicapped and chronically ill children.

2.3.2. Emotional functioning
From the Dutch Personality Questionnaire (DPQ),12 derived from the California Psychological Inventory,13 three scales were used, namely hostility (19 items), self-esteem (19 items) and neuroticism (21 items). Hostility measures the extent of criticism, distrust and intolerance towards other people. Self-esteem measures a positive attitude towards work, flexibility and being energetic and self-controlled. Neuroticism measures feelings of stress, depression, instability and insecurity. The response possibilities of the DPQ are: yes = 2, do not know = 1, and no = 0. A high score of self-esteem indicates a high self-esteem. On the other scales, the higher the scores, the poorer the social adjustment. The internal consistency, stability and validity of the DPQ can be considered favourable.12,14 The psychometric qualities of the DPQ are describedelsewhere in more detail.5

2.3.3. Social functioning
Leisure-time activities were assessed with standardised items derived from the Netherlands Central Bureau of Statistics.15,16

2.4. Assessment procedure
During their visit to the Erasmus Medical Centre, patients were interviewed and tested by a psychologist (EvR) and medically examined by acardiologist. For patients with low intellectual functioning, the question(naire)s were verballyadministered, if possible. Of the 362 patients, 28 patients preferred to complete the questionnaires at home. In these cases, the structured interview was done by telephone, except for five patients who refused to have such an interview.

2.5. Statistical analyses
For biographical characteristics, proportions ofpatients are presented in percentages and actual numbers. Levels of significance were calculated only when the patient sample was comparable to reference groups with regard to age and gender. In order to correct for multiple comparisons, only the differences in biographical characteristics with a level of significance lower than 0.01 were considered significant. As to the emotional and social functioning, for the both patient sample and for the reference groups, 95% confidence intervals (CI) were calculated, respectively, around the group means of the DPQ scales and the proportions on leisure-time activities. If the 95% CI of the patient sample did not overlap with those of the reference group, the differences between the group meansor the participating proportions were considered significant. Comparisons between diagnosticcategories were also performed based on 95% CI. Owing to small cell sizes, statistical differences between diagnostic categories could not always be proven. For the DPQ, Cohen's Ds17 were computed to assess the magnitude of differences in mean scores between the patient sample and the reference groups. According to Cohen's17 criteria, a standardised difference of 0.20 can be considered as small, 0.50 as medium, and 0.90 as high.


    3. Results
 Top
 Abstract
 1. Introduction
 2. Methods
 3. Results
 4. Discussion
 References
 
3.1. Biographical characteristics
The main biographical characteristics are outlined in Table 1. The majority of the patient sample(78%) was living on their own (defined as living independently), while a total of 18% was not living independently, but with parents or another caretaker. When specified for age and sex categories, the living conditions of the patient sample showed high similarities with those of the reference group. The 25–29-year-old females from the patientsample were living on their own, significantly more often compared to the reference group . Patients appeared to be living in (or under supervision of) institutions for mentally handicapped significantly more often than the reference group (4 vs. 1%; ), with no significant differences between diagnostic categories.

With respect to the marital status of the patient sample, at least 72% was in some sort of relationship at the time of the interview. For persons living independently , no significant differences in marital status were found between the patient sample and the reference group.

Regarding offspring, a total of 34% of the patient sample had one ore more child(ren). Amongmarried persons or cohabitants , none of the 20–24-year-old patients had any children, in contrast to 14% in the reference group. Within the age range of 25–39 years, no significant differences in offspring were found between the patient sample and the reference group. The proportion of patients with congenital heart disease with offspring drops after the age of 40. Based on median split age groups, no significant differences between thediagnostic categories were found.

Table 1 shows that 27% of the patient sample had followed some sort of special education in the past. Of these patients, 85% attended schools for learning-disabled or mentally handicapped children and 15% for chronically ill children. The proportions of patients with a history of special education were significantly higher in the diagnostic categoriestetralogy of Fallot (33% (22–44)) and transposition of the great arteries (40% (27–53)) than in the atrial septal defect group (13% (6–20)).

The educational attainments of the patientsample were evaluated excluding those living in institutions for mentally handicapped. For thepatient sample, the highest educational level completed was significantly more often a lower level incomparison to the reference group (47 vs. 39%,). No significant differences in educational attainments were found between the diagnostic categories.

Regarding the daily activities of the patientsample, at least 85% had a paid job (persons on long-term sick leave and working in labour institutions for mentally handicapped included), 7%received some sort of social security benefit and 8% were either attending school or doing full-time household work. Normative data on daily activities were not available. Although no significant differences between diagnostic categories were found, social security benefits were received most often in the diagnostic categories tetralogy of Fallot and transposition of the great arteries (12 and 13%, respectively).

The occupational status of the patient sample is further outlined in Table 2. The patient sample appeared to be significantly overrepresented in the lower level occupations, and underrepresented in the scientific occupations, compared to the reference group. No significant differences in occupational status were found between the diagnostic categories. As to the duration of employment, the patient sample did not differ from the reference group, nor were there any significant differences between diagnostic categories. In the decision to work part-time, the congenital heart disease played a role in 21% of the cases. Although no statistical differences between diagnostic groups were revealed, the congenital heart disease was mentioned as a reason to work part-time most often in the diagnostic categories, transpositionof the great arteries, pulmonary stenosis andtetralogy of Fallot (40, 36 and 29%, respectively). Besides specific cardiac problems, weariness was often mentioned as another reason. The estimation of the gross income in the patient sample exceeded that of the reference group to some extent. The congenital heart disease sick-leave percentage was higher than that of the reference group. This was not in accordance with their own perception, since the majority of the patient sample reported to have a lower sick leave than colleagues. Although no statistical differences were revealed, the sick-leave percentage was highest in the diagnosticcategories, tetralogy of Fallot and transposition of the great arteries (10.7 and 10.1%, respectively). The congenital heart disease was mentioned as a reason for sick leave in 8% of the cases. Among the diagnostic categories, this was the case most often within the category, transposition of the greatarteries (18%). The patients' estimation of career possibilities seemed favourable and equal for all the diagnostic categories. Table 3 provides anoverview of the main, more objective, occupational variables for the five different diagnostic categories.


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Table 2 Occupational status of persons with paid work in the patient sample and reference group (persons in labour institutions included)

 

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Table 3 Summary of main variables concerning occupational status for different cardiac diagnostic groups

 
3.2. Emotional functioning
On the DPQ, the patient sample obtained significantly more favourable results on hostility, self-esteem and neuroticism than the reference group (Table 4). The differences in mean scores could all be considered as medium, according to Cohen's17 criteria, except for the effects, for females, on neuroticism, which could be considered as small.


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Table 4 Mean scores, 95% CI, standard deviations and Cohen's D on the DPQafor patient sample and reference group and DPQ-EX.bgroup

 
Of the 351 patients who completed the DPQ, 18 patients fulfilled their daily activities in either a labour institution or an activity centre for mentally handicapped and 25 patients completed it at home (one patient belonged to both of these groups). It was assumed that the DPQ reference group did not contain any mentally handicapped. Furthermore, possible bias from home-completed questionnaires should be excluded. Therefore, DPQ scores for the patient sample, after excluding those visitinglabour institutions or activity centres for mentally handicapped and patients who completed the DPQ at home (DPQ-Excluded), were calculated. Theresults of the DPQ-Excluded group were only slightly different from those of the original 351 patient-respondents (Table 3). The DPQ-Excluded group also obtained significantly more favourable results on hostility, self-esteem and neuroticism than the reference group.7

Effects of diagnostic category, sex and age on emotional functioning of the patients were computed on the DPQ scales. No significant differences were found between the diagnostic categories. As for the sex effects, females scored significantlyless favourable on self-esteem compared to males(females: mean = 29.9 (29.0–30.8); males: mean = 32.0 (31.3–32.7)). Furthermore, in accordance with the reference group, females reported significantly more complaints on neuroticism than males (females: mean = 10.3 (9.2–11.5); males: mean = 6.5 (5.6–7.4)). To assess age effects, two categories (20–29 years and 30–46 years), based on the median split of the patient sample, were formed. No significant age effect was found.

Since the number of male vs. female and younger vs. older patients differed across the diagnostic categories on all DPQ scales, sex and age effects were next tested when adjusted to diagnostic category. For each diagnostic category, 95% CI around the mean scores on the DPQ scales of male vs. female, and younger vs. older patients werecompared. No significant sex or age effects were found.

3.3. Social functioning
Table 5 presents significant differences in participation in leisure-time activities between thepatient sample and reference group for different age- and sex-based groups. For all of these differences, participation was higher in the patientsample than in the reference group. Higher participation in leisure-time activities was reported for outgoing activities like going to the movies, visiting clubs and discos and shopping, as well as for domestic activities like playing games and watching TV.


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Table 5 Significant differences in leisure-time activities (proportions of participation and 95% CI) between patient sample and reference group

 
When total sport participation (≥1h a week) between the diagnostic categories was compared, no significant differences were found. More intensive sport participation (≥5h a week), however, was found significantly more often in the diagnostic category, ventricular septal defect than in the transposition of the great arteries group (19%(11–27) and 4% (0–9), respectively). Apart from the brain-teasers, which were performed significantly more often by patients with ventricular septaldefect and transposition of the great arteriesthan by the patients with tetralogy of Fallotand pulmonary stenosis, no further significantdifferences, between the diagnostic categories, inparticipation in leisure-time activities were found.


    4. Discussion
 Top
 Abstract
 1. Introduction
 2. Methods
 3. Results
 4. Discussion
 References
 
4.1. Biographical, emotional and social features of the patient sample
Overall, living conditions, marital status and offspring of the patient sample in the present study showed high similarity with the reference groups. Regarding living conditions, Ternestedt et al.6 also found similarities between patients with congenital heart disease and a normative sample. Kokkonen and Paavilainen3 and Utens et al.,5 however, did find differences: especially the young patients with congenital heart disease were living with theirparents more often than reference groups. The higher mean age and larger age range in adulthood, in the present patient sample, compared to the relative young samples of the previous studies3,5 provide a possible explanation for these diverging findings. The previously found arrears in living conditions might be equalised later on in adulthood.As to marital status, the results of the presentstudy confirm to those of Ternestedt et al.,6 butare in contrast with the results of Kokkonen and Paavilainen3 and Gersony et al.4 The latter found patients with congenital heart disease to bemarried less often, or get married at a later age compared to the reference groups. It should,however, be mentioned that in the present study, marital status was scrutinised for a selection ofthe patient sample, namely those already living independently. Offspring was examined only for married persons or cohabitants. Furthermore, in this study, both sexes were included, instead of only females, which might explain the favourable outcome in offspring in contrast to the study of Gersony et al.,4 who found elevated childlessness among congenital heart disease women. It should be noted that decreased rates of offspring for the youngest (20–24 years) and oldest (above 40 years) patients of the sample could not be proven significantly different because of empty and small cells.

In the present study, the proportion of patients with a history of special education can be considered as high. For 15% of those the impact of the congenital heart disease on their school career (hospitalisation, restrictions) seemed to be the main reason for attendance of special education, since they had been in schools for chronically ill children. In the remaining 85%, some sort of learning disability or mental retardation seemed apparent, considering the type of special education they had attended. Additionally, within the patientsample, the highest educational level completed was more often a lower level compared to the reference group. Although it is well known that congenital heart disease patients encounter different barriers in their educational course during childhood, such as absence from school due to illness, treatment or recovery18,19 and learning-disabilities,19–21 the high number of adult patients with congenital heart disease with a history of special education never appeared so clearly as in this study. This high attendance of special education in the past might have resulted in lower educational attainments in adulthood: a finding, which is highly in contrast with the findings of Brandhagen et al.2 and Ternestedt et al.,6 who found an even higher educational level in theadults with congenital heart disease compared to the normative groups.

In accordance with the educational attainments, this patient sample had lower level of occupations significantly more often than the reference group. The duration of employment of the patient sample, however, did not differ from the reference group. The gross income of the patient sample seemed somewhat higher than the reference group. However, it should be mentioned that most patients could only give a rough indication of their income and, owing to social desirability, they might have exaggerated their estimations. The sick-leave percentage of the patient sample was higher than that of the reference group, although most patients estimated that their sick leave was less thancolleagues. This might indicate possible denial.Accordingly, patients with congenital heart disease seemed to have a positive perception of theircareer possibilities. Overall, it can be stated that, despite a somewhat lower occupational level and higher sick leave, the present patient sample showed favourable results regarding the durationof employment, income and perception of career possibilities. Broadly speaking, this confirms the positive findings of previous studies1,3,4 withrespect to employment.

Regarding emotional functioning, Brandhagenet al.2 found an increased level of psychological stress in adults with congenital heart disease. Shampaine et al.1 found both positive and negative emotional outcomes. Ternestedt et al.6 foundmore favourable emotional outcomes in patients with tetralogy of Fallot compared to patients with atrial septal defect. The present patient sample showed more favourable scores than the reference group on hostility, self-esteem and neuroticism. These findings are similar to those of Utens et al.5, who studied the same cohort with the same instrument regarding emotional functioning 10 yearsearlier. In this study,5 it was suggested that denial mechanisms and high achievement motivationpossibly lead congenital heart disease patientsto overrate their emotional states. Recently,perseverance has been put forward as acoping mechanism in congenital heart diseasepatients.6

Social functioning of the patient sample canbe considered favourable. If significant differences were found in participation in leisure-time activities, the congenital heart disease patients obtained more positive scores than the reference group. These overall favourable results on social functioning confirm earlier favourablefindings.4,5

4.2. Effect of cardiac diagnosis
Regarding biographical characteristics, no significant differences between the diagnostic categories were found for living in institutions, having offspring, educational attainments, receiving social security benefits, occupational level and duration of employment. Regarding social functioning,participation in leisure-time activities was highly similar among the different diagnostic categories, except for intensive sport participation.

Overall, it can be stated that individuals within the diagnostic categories transposition of the great arteries and tetralogy of Fallot showed someresidual effects from the congenital heart defectas to participation in education, occupation and intensive sport, but further were able to live normal lives. This finding is supported by the fact that no significant differences in emotional functioning were found between the diagnostic categories.

4.3. Effects of sex and age
As to living conditions, the 25–29-year-old female patients were living on their own significantly more often than the reference group. Regarding the offspring, the patients seemed to raise families somewhat later, in their 20s, when compared with the reference group. Remarkably, there was a drop of patients with offspring after the age of 40. This is probably due to a cohort effect since for the eldest of the patient sample, the cardiac surgery was not yet available when they were born. Therefore, patients were more likely to be operated at an older age and treated with less advanced techniques compared to the youngest patients in this sample. Also, they were the first congenital heart disease patients to enter adulthood and experience uncertainties regarding having offspring. Theimpact of the congenital heart disease on having offspring may, therefore, be greater for the older patients in the sample, compared to the younger ones.

With respect to emotional functioning, female patients scored significantly less favourable onneuroticism (in accordance with the reference group) and self-esteem than male patients. This is consistent with previous findings,22 which showed that females with congenital heart disease report more somatic complaints than males withcongenital heart disease.

4.4. Limitations
It should be noted that the present patient sample contains a selection of five frequent diagnostic categories and may, therefore, not be completely representative of all the congenital heart disease anomalies. The present patient sample concerns a generation of congenital heart disease patients who were treated with different techniques than the ones used at present. Since major advances took place in surgical techniques and psychosocialneeds could have changed, the results of this study might not fully apply to young patients with congenital heart disease operated upon these days. Biographical characteristics and social functioning of the present study's sample might not be directlyapplicable to other countries and cultures, since life styles or aspects, for example, availability ofsocial security or educational systems, might differ considerably. Therefore, caution should be takenin generalising the psychosocial functioning ofpatients with congenital heart disease as described in this study.

For biographical variables, normative data were not always available. Some biographical variables were only looked at under selected conditions (marital status of independently living persons and offspring of cohabitants or married persons). This might be attributed to the favourable results on these variables for the patient sample. Furthermore, some diagnostic categories had relatively small sample sizes, which implied larger 95% CI for these groups. This may have hampered finding differences between the diagnostic groups. Taking into account the large amount of comparisonsthat were made in this study, the amount of differences in psychosocial functioning between thepatient sample and reference group can be considered limited. This strengthens the overall positive outcome for this sample of adult patients with congenital heart disease on biographical characteristics, and emotional and social functioning.

4.5. Implications
The present study shows that this sample of adult patients with congenital heart disease has residual problems regarding its educational and occupational status, which seems a reflection of disadvantaged positions in childhood as can beconcluded from the high attendance of specialeducation in the past. However, patients seem to make good use of their abilities as can be concluded from their favourable outcomes on duration of employment and income, and their optimistic outlook on career possibilities. The diagnostic category transposition of the great arteries seems to be hampered by the congenital heart disease most often in their employment, since they mentioned it most often as a reason for part-time working or sick leave.

Taking in consideration further results on biographical characteristics, emotional and social functioning, these adult patients seem capable of leading normal lives. However, some precaution must be taken into account. Some of these positive outcomes, for example regarding sick leave, might be influenced by a tendency in these adult patients to give social desirable answers. Whether this should be explained by denial of restrictions or a coping strategy to keep an optimistic view on their possibilities is unclear. Future research should therefore aim at coping strategies in adult congenital heart disease patients, in order to get a better understanding of how they experience theirabilities. Further, the longitudinal development of psychosocial functioning of these patients as well as the influence of medical variables (not yet systematically available) should also be the focus of future research.


    Acknowledgments
 
We gratefully acknowledge the kind co-operation of all the patients, who participated in the study; without them this study would not have been possible. Also we acknowledge Mrs W. van der Bent for her support in the data collection. This study was financially supported by the Netherlands Heart Foundation (No. 99.033).


    References
 Top
 Abstract
 1. Introduction
 2. Methods
 3. Results
 4. Discussion
 References
 

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