International Journal of Cardiology, 36 (1992) 23-29 0 1992 Elsevier Science Publishers B.V. All rights resewed 0167-5273/92/$05.00


CARD10 01478

Social adaptation of young adults with congenital heart disease Jorma Kokkonen

and Terho


Department of Paediatrics, University of Oulu, Oh,


(Received 12 June 1991; revision accepted 8 February 1992)

Kokkonen J, Paavilainen T. Social adaptation of young adults with congenital heart disease. Int J Cardiol 1992;36:23-29. The social status of 71 young adults (30 females, 41 males, aged 22.9 k 1.9 yr) with congenital heart disease was compared with that of 211 (106 females, 105 males, mean age 23.2 f 1.4 yr) randomly selected controls. The clinical examinations included clinical study with ultrasonic visualization, electrocardiography, X-ray and measurement of exercise capacity. In the study group 87% had completed school at the secondary level and another 21% at high school level, while the corresponding figures in the control group were 98% and 51%. About half of both groups continued to vocational training and a fifth to a higher level. Those without any vocational education made up 32% of the study group (95% confidence interval 21-43%) and 11% of the controls (95% confidence interval 7-15%). State benefits were the main source of income for 13% of the study group as compared to 2% among the controls. The employment status of the actual labour force showed no significant difference between the groups. Among patients with congenital heart disease there were significantly more of those who had developed a dependent life style, living with their parents without a marital or quasi-marital relationship. A cyanotic type of severe heart defect is one of the factors predisposing to poor success at school and a dependent lifestyle. Congenital heart disease, even when treated, is a significant factor which influences adult life. The results call for more practical support to assist psychosocial maturation, especially in patients with residual defects. Key words: Congenital heart defect; Social outcome

Introduction Since the 1940s when the first operation methods were developed, long-term management of patients with congenital heart diseases has come Correspondence to: J. Kokkonen, M.D., Dept. of Paediatrics, University of Oulu, SF-90220 Oulu, Finland. Tel. + 358 + 81+ 3152011 (/5126X

to include increasing numbers of postoperative patients. The survival figures have increased from some lo-15% to 70-90%. Physical outcome depends on the residual defect and functional disorders of the heart, but in some patients it may be affected by other disorders, for instance associated malformations and mental retardation, which are more common in children with congenital heart disease than in healthy ones [l].


Because of the defect the environment of social growth may be changed, owing to the attitude of parents, peers and teachers. The patients are easily overprotected and separation from the parents in adolescence may therefore be delayed. This deviation in social relations may also be influenced by the emotional trauma described in children with congenital heart disease [2-41. To find out whether these factors still affect the lives of patients with congenital heart disease even as adults, we re-examined 71 epidemiologitally selected young adults with congenital heart disease and evaluated their social outcome.

tricular septal defect 15, coarctation of the aorta 7, Fallot’s anomaly 6, aortic stenosis/insufficiency 5, pulmonary stenosis 5, transposition of the great arteries 2, partially anomalous pulmonary venous connection with dextrocardia 2, tricuspid atresia 1, and congestive cardiomyopathy 1. In 61 (86%) of the final study group a definitive repair and in 4 only a palliative shunt operation had been performed and the remaining 6 were not operated. The last mentioned included patients with dextrocardia (21, mild aortic stenosis (2), cardiomyopathy (1) and ventricular septal defect (1 refused). Corrective surgery had taken place at an average age of 7.1 yr (range O-15 yr). A control group for the sociodemographic data of the study consisted of 211 age-matched young adults (106 females, 105 males, average age 23.2 yr) selected at random from the population registry of the area. The social outcome was systematically reviewed in the re-examination with information concerning elementary and high school education, vocational training and education, present and previous employment, separation from home and social integration to the society. A paediatric cardiologist (T.P.) made an echocardiographic examination and checked their electrocardiography

Patients and Methods The series included all the patients with congenital heart disease confirmed with heart catheterization born 1963-1968 in the area of Oulu University Central Hospital. From the 87 patients selected 6 (7%) had died and 2 (2%) were institutionalized for profound mental retardation. Out of 79 invited 71 (31 females and 40 males, average age 22.1 yr, range 19-25 yr) attended re-examination in the outpatient clinic. Nine of the patients had originally had a cyanotic type of congenital heart disease. The definition of the main defect was: atria1 septal defect 25, ven-

TABLE 1 Basic and vocational education of young adults with congenital heart disease. Patients with congenital heart disease Cyanotic (N=9)

Controls (N = 211)

Not cyanotic tN=62)







Elementary school normal auxiliary

I 2

(78) (22)

55 7

(89) (11)

207 4

(98) (2)

High school







Vocational education basic level mid-level or university no vocational training

5 0 4

(56) (-1 (44)

27 16 19

(44) (25) (31) *

114 73 24

(54) (35) (11) **

* CI,, for the whole group with congenital heart disease 21-43% ** CI, for the controls 7-15%


fidence interval 4-U%) of the controls did not succeed in completing professional education or were left wholly without it. One fifth of both groups continued to mid-level vocational education with no difference in the range of fields of study. Three percent of the patients with congenital heart disease and 17% of the controls studied at university level.

and chest X-ray findings. All the patients and 18 of the controls selected at random attended the exercise test. The results were analyzed with an [email protected] using confidence intervals and conventional statistical methods in testing the differences between the groups. Results

Employment Education State benefits were the main source of income for 9 patients (13%) in the study group and also for 4 (2%) controls. One subject from the patients with congenital heart disease applied for a cessation of his pension and joined the labour force. As one-fifth of the study group and onethird of the controls continued their studies, the remaining 47 (66%) from the patients with congenital heart disease and 137 (65%) from the controls formed the actual labour force. Their present and previous state of employment as well as their experiences of unemployment are expressed in Table 2, showing that the patients in the study group had experienced no more unemployment than the controls. The range of working fields or employers were not significantly different between the groups. Patients with congenital heart disease were not more likely to work in the public services than the controls.

Nine of the subjects in the study group were unable to finish the normal elementary school course of 9 yr, whereas only 4 among the controls failed to do so (Table 1). Fifteen (21%) out of the patients with congenital heart disease succeeded also in completing high school, the figure being twice as high among the controls. About half of both groups had selected vocational education and training after the third year of secondary school. The subjects of the study group had selected commercial fields more often than the controls but otherwise the range of fields did not differ between the groups. The cessation rate among the patients with congenital heart disease in vocational education was twice as high as among the controls. Finally, up to 32% (95% confidence interval 21-43%) of the patients with congenital heart disease and 11% (95% con-




and pension

of young


with congenital



Patients with congenital (N= 71)

Controls (N=211)

Not cyanotic (N=62)

Cyanotic (N=9) N

heart disease






On pension














Labour force employed home. other status unemployed experienced unemployment

1 1 _

(11) (100)

48 40 3 5 8

(77) (83) (6) (11) (17)

137 118 8 II 21

(65) (86) (6) (8) (15)

> 12 mth



Social status

and type of living. Patients with congenital (N= 71) Cyanotic (N=9)


heart disease

Controls (N = 211)

Not cyanotic (N = 621







6 3

(67) (331

47 15

(761 (24)

115 96

(55) (45)

5 1 3

(56) (11) (33)

32 15 15

(521 (24) (24)

75 40 96

(36) (19) (45)


single married/cohabiting Type of living with parents alone with husband/wife

Marital status and type of living

The patients in the study group were significantly more often unmarried and not cohabiting than the controls. The difference between the groups is also statistically significant (Table 3). Patients with congenital heart disease also continued more often to live with their parents at the time of the study, but they had been living outside their homes for shorter periods of time as often as the controls because of studies or for other reasons. Up to 41% of the patient group were considered to have delayed in their normal social maturation to grow up adults (Table 4). As the respective figure among the controls was 11% the difference between the groups was significant. Clinical

valve leakage in eight (11%). None of these were considered significant enough to endorse further procedures. Sixteen subjects (23%) in the study group had a submaximal exercise capacity of less than 90% of the value predicted according to sex and height, whereas none of the controls did so (Table 5). The worst exercise test results were found, as expected, in the “blue” ones, out of whom five remained below 60%. Disability

As evaluated on the basis of the clinical findings, including the exercise test results, altogether 19 (27%) patients showed disability still as adults. Eight received a disability percentage over 40,

findings TABLE

Major extracardiac findings in the patients of the study group were mental retardation (5), scoliosis (31, epilepsy (1) and deafness (1). Clinically significant electrocardiographic findings were found in 11 (15%) patients in all. Arrhythmias numbered proportionally most in patients with operated ventricular septal defect. An enlarged heart according to the chest X-ray was found in 20 cases (30%). A residual shunt or recoarctation was found in 12 (17%) patients and a separate aortic or mitral


Evaluated social heart disease. Social maturation


Patients with congenital disease (N = 71) N=71

Normal Immature * CI,, ** Cl,,

of young








42 29

(59) (41) *

114 14

(89) (11) **

30-52%. 7-15%.

with congenital

Controls (N = 211)





Maximal exercise % of predicted



and disability


Patients (N=71)

< 60 60-90

in different with congenital

adults with congenital

heart disease


5 11

(7) (15)


(-) (-)


Relative risk ratios for poor social maturation with congenital heart disease.

in young adults

CI,, of the relative risk ratios

Significance of the difference

1.3-4.1 1.3-3.6 1.0-2.2 0.9-2.8

p < 0.01 p < 0.01 I, < 0.05 NS






Controls (N= 2111


The patients selected in this series represent a selected group of congenital heart disease. They were treated with the facilities of our hospital in the 60s and 70s and generally at a later stage in life than is normal today. This is why the residual defects were as numerous as seen in the results. However, the series was socially unselected and certain conclusions about the social adaptation in the adolescence can reliably be drawn. On the other hand, our experience continues to be rele-

Disability for congenital heart disease Poor success at school Male sex No vocational education Low social class of the parents

of young






most of them “blue” patients but also one with cardiomyopathy. As evaluated by a logistic regression analysis patients with symptoms of heart failure or restricted physical capacity showed significantly more often difficulties in social maturation (Table 6). This deviation was found to be explained also by such factors as impaired progress at school, lack of vocational education and male sex but not on parents’ social class.



vant, as more infants with combined and severe defects survive to reach adulthood. There have been few patient series of young people with congenital heart disease followed until they reach adulthood, and re-examined for their social progress through adolescence. As the youngest of our patients were at least 19 yr of age, they should all have reached the stage of early adulthood, the most important developmental tasks of which are getting employed or having a vocational education, estabhshing social maturity and getting married, separating from the parents and choosing a life style [5]. In this series 41% of patients on the verge of adulthood still showed problems in the achievement of the developmental cascade of the adolescence. Difficulties in social life were three times higher than among the controls. The reasons for this seemed to be a variety of developmental processes both inside the personality and in the attitude of the family and the environment. Residual symptoms also correlated with deviating social progress. Progress at school in the study group was not wholly unsatisfactory. When taking into account those with mental deficiency, well known to be associated with congenital heart disease in some patients, the success was moderate up to the mid-level. Besides, part of the deviation seen thereafter can be considered to be due to the excessive number of males ip the study group. One problem was a fairly high drop out in vocational education, which together with those not even starting vocational training lead to a significantly increased number of vocational untrained subjects. We saw this phenomenon also in other series of chronic diseases, for instance diabetes, and have considered it to be due to ambivalence about life goals just after school. It may be influ-


enced by the lack of the future image described in adolescents with chronic diseases [6]. Four patients were on disability pension because of mental deficiency, four because of congenital heart disease and one because of both. Loneliness, lack of self-esteem and a restricted life style were the problems of the pension recipients, as also experienced by other groups with chronic diseases. Of these nine patients only two continued to study, one was employed part-time and another worked in a centre. Judged by their physical or mental capacity, all could have been trained with an early rehabilitation program to work at least part time or in sheltered workshops. Work should not be considered only in terms of earnings but also as a source of motivation to live, self esteem and as a basic value of life as well as a source of social contacts [7]. On the other hand, as compared to the controls, those among the subjects who belonged to the labour force succeeded well. Their types of posts or experiences of unemployment were not different from those observed among the controls. Only two worked in highly physical activities, although their physical capacity was restricted. The deviation in the social contacts seen in a dependent, home-based life style in patients with congenital heart disease was one of the main findings of the study. Even the group with a normal mental capacity was more tied to their parents and home, lived more often at home and their sexual maturation was delayed as compared to the controls. This deviation did not show a good correlation to the degree of the disability, but was influenced by the social environment. The results in this respect may reflect the earlier observations that children and adolescents with congenital heart disease are overprotected in the family and form easily a dependent style of life if they are not pushed forwards by the parents and later by the society [4]. The main issue is of course that the parents themselves have actively formed the close relationship during childhood. This seems to modify the social progress after the adolescence more than the defect itself. In contrast to the home-dependent patients, many of those with a still impaired state of health with residual defects lived a harmonious adult life.

It is suggested that congenital heart disease, even when treated, is a significant factor which influences adult life. The patients who had been treated for congenital heart disease had more often developed a dependent life style. Our results call for more practical information to the parents about the possible social consequences of congenital heart disease and their influence on social functioning. Handling of the developmental processes in the adolescence should be a part of the treatment of congenital heart disease in adulthood so that this social deviation can be avoided as much as possible. This task is best achieved in centres taking care of children with congenital heart disease over puberty into adulthood [81. Concerning the physical outcome, more than 70% of the patients with congenital heart disease could have been made symptomless and free from physical restrictions even with the facilities used in the 60s and 70s. The wide range of the problems encountered in the rest give rise to the question where and how often these patients should be followed. In some 15-20% of the cases repeated cardiological consultations with advanced facilities were considered necessary. Better timing of the operations and neonatal surgery in particular have improved the outcome of congenital heart disease since then. It is important to minimize residual defects but it is equally important to take care of the rest who suffer still in their adulthood from different degrees of cardiac symptoms. This combined with the problems in social growth described earlier calls for special clinics to take care of the young adults with congenital heart disease. References Meberg A, Otterstad JE, Frdland G, Sorland S. Barn med medfiidt hjertefeil i Vestfold 1982- 1988. Tidskr Nor Laegeforen 1990;110:354-357. 2 Garson A, Williams R, Reckless J. Long term follow-up of patients with tetralogy of Fallot: physical health and psychopathology. J Pediatr 1974;85:429-433. 3 Linde L, Rasof B, Dunn 0. Longitudinal studies of intellectual and behavioral development in children with congenital heart disease. Acta Paediatr Stand 1970;59:169-76. 4 March JE. The child becomes an adult: a study of adults

who had cardiac surgery in childhood. In: Langford Kidd BS, Rowe RD, eds. The child with congenital heart disease after surgery. Mount Kisco: Futura, 1976. 5 Newman BM, Newman PR. Development through life: a psychosocial approach, 3rd ed. Dorsey: Homewaad, III, 1984. 6 Johanson E. Larsson Y. Ludvigson J. Social adaptation in

juvenile diabetes. Acta Paediatr Stand 1979;suppl 275:8587. 7 Wallace C. For richer for poorer. Growing up in and out of work. London and New York: Tavistock Publications, 1987. 8 Somerville J. Congenital heart disease in adults and adolescents (Editorial). Br Heart J 1986;56:395-397.

Social adaptation of young adults with congenital heart disease.

The social status of 71 young adults (30 females, 41 males, aged 22.9 +/- 1.9 yr) with congenital heart disease was compared with that of 211 (106 fem...
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