InternationalJournal of Cardiology, 9 (1985) 493-495 Elsevier

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News and Views

IJC 00330

The pediatric cardiologist and adolescents with congenital heart disease

Ellyn Donovan University of Pittsburgh, Cardiology Division of Childrens Hospital of Pittsburgh, Pittsburgh, Pennq~kanra

(Received and accepted 21 June 1985)

The Cardiology Division of The Childrens Hospital of Pittsburgh has designed a format for dealing with adolescent patients with ongoing cardiac disease. At this stage, when the patients are neither children nor adults, the integration of ongoing disease is particularly difficult. They are already more vulnerable because of the complex psychosocial demands of normal adoles- cent growth and development. The issues of understanding and addressing all of their needs are of upmost importance if they are to be given total medical care.

(Key words: congenital heart disease; adolescence; psychosocial development; counseling)

Introduction

With advances in cardiovascular surgical techniques, more children with complex cardiac anomalies are reaching adolescence and beyond. Even as this is written, heart-lung transplan- tation in the pediatric group is being explored and may improve survival in individuals with hitherto untreatable pulmonary vascular disease. Pediatric cardiologists are now faced with a unique set of problems as they become care providers for adolescent and young adult patients. Trained as pediatricians whose main concerns are disease amelioration and parent counseling, pediatric cardiologists suddenly find themselves confronted by burgeoning adults with conflicts and concerns apart from family and medical staff. One of the most important of these concerns is the social and emotional impact of ongoing cardiac disease.

Chronic illness, whether benign or mahgnant, brings with it complex questions for the adolescent and seriously challenges his opportunity for adult competency. A recent study [l] describes an adverse impact on the psychosocial functioning of adolescents who have continuing physical impairments. The article states that while normal psychosocial function- ing follows resolution of disease, anxiety, depression, and unhappiness occur if the disease process continues. They conclude that these youths experience a less healthy psychologic state than those who do not have health impairment. Denhoff and Feldman [2] are less specific in their description of disease residue but state that chronic illness has unpredictable behavioral effects that require attention and rearrangement.

Reprint requests to: Ellyn Donovan, Ph.D.. Cardiology Division, Childrens Hospital of Pittsburgh, 125 DeSoto Street, Pittsburgh, PA 15213, U.S.A.

0167-5273/85/$03.30 0 1985 Elsevier Science Publishers B.V. (Biomedical Division)

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The Effect of Disease on the Patient

With adequate parents, most babies and toddlers with cardiac disease find themselves integrated into the family and experience at least some success with both physical and emotional growth. The issues that school, friendship, and participation in the world present to the child with cardiac disease, however, are often couched in experiences of failure and ostracism. With growth to adolescence these negative experiences are confirmed and the adolescent with ongoing disease experiences confusion, copes poorly when confronted with problems and exhibits self-destructive tendencies, sadness, depression, and loneliness. A psychosocial outcome chart for this situation compared to normally healthy children/adoles- cents is shown in Table 1.

Some important problems this situation brings can be classified under internal issues and disclosure issues. There are several internal issues. One df the most important is the complex child-rearing patterns that are established at diagnosis and maintained throughout the illness. While parents feel increasingly ambivalent and burdened with continued need of caretaking, the adolescent patient experiencing guilt and rage, engages in more than usual acting out behavior and withdrawal. Another internal issue is the grave concern that adolescents have about an inheritance factor. They are universally afraid they will pass the condition to their own children. The adolescent is also confused and angry over why he had to be born with heart disease. Both they and their families have a constant fear of sudden and early death. An overwhelming number of these adolescents fear they will not live past 35. They develop a poor body concept highlighted by inferiority and vulnerability and evolve a preoccupation with and over-interpretation of body sensations.

Disclosure issues include the conflicts that occur for the adolescent when potential employers ask for a health history or when they are unable to compete for a good job because of physical limits. Rejection by the military is experienced by all adolescents with even mild cardiac disease. More than normal concerns and conflicts occur when the adolescent with cardiac disease begins to pursue courtship and marriage. After finding a partner who accepts them, problems of in-law rejection often occur. This is compounded with concerns about contraception and conception for girls and or arousal/intercourse for boys. Acceptance of physical limits and coping with this is especially difficult for boys. For the most part adolescents with ongoing cardiac disease find themselves either ineligible for health and life insurance or find the financial rates much higher (unaffordable) than for their normally healthy peers.

The most compromised of the cardiac adolescents frequently find themselves largely house-bound, dependent on parents and/or spouse and receiving social security payments

TABLE 1

Psychosocial age outcomes.

Age (yr)

7-10 11-13 14-16 17-19

20+

Outcome - normal health

Internalization of good/bad self Sense of wholeness, going relationships Beginning heterosexual relationships Integration of new self, separation

from parents Career/family launching

Outcome - moderate to severe cardiac disease

Fearful - feelings of being bad Self absorbed - fear of ostracism Peer problems - ostracised Role problems; remain dependent

Isolation from world, lonely

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because of their disability. This leads to poor functioning as an adult and compounds and reinforces the feelings of sadness, worthlessness, and apathy.

Adolescents with moderate to severe cardiac disease generally experience an overwhelming sense of separation and aloneness. Their socialization patterns, interaction with family and friends and job-hunting are marked by withdrawal, passivity, yd isolation. The negative impact they experience because of their cardiac disease is imposed by external reality and internal emotional response. These are directly responsible for their failure to achieve optimal economic capacity, social performance, and personal fulfillment.

The Role of the Pediatric Cardiologist

Because these issues can have a more debilitating effect on the adolescent than the heart disease itself, pediatric cardiologists should provide themselves and their staff with guidelines and management techniques to approach their adolescent population. In general, all adoles- cent patients should be seen within blocks of time reserved for adolescent visits. Younger patients ideally should not be in the office area during these visits. Generally these patients should be given a choice about whether or not parents are present during examination.

Adolescents with cardiac disease can be classified into three general groupings and supportive counseling can be given appropriate to the needs of the group in which the patient is placed. The first group includes those who have undergone corrective surgery and who are maintaining a benign, stable course. If they are not symptomatic and their examination shows good cardiac function, they can be given better understanding of their heart disease and reassured about its course. They can also be counseled about employment and marriage (including contraception information for girls). At this point, the pediatric cardiologist may want to discharge these patients to adult cardiologists or to their family physician.

Patients in the second group are physically stable, but have an expectation of future problems and/or procedures. They have mixed functional abilities and some have symptoms or express concerns about symptoms. In addition to the above counseling it may be necessary to explore their anxiety about symptoms and death fears. Appropriate ego defenses should always be supported rather than challenged.

Patients in the final group are physically unstable and may or may not be candidates for future medical and/or surgical procedures. Problems with day-to-day living, feelings about the results of the examination and potential need for psychiatric counseling should all be assessed within this group. These patients have the greatest need for deep, positive rapport and understanding with their cardiologist. They may also present intermittent self-destructive symptoms which should be dealt with by the cardiologist according to his assessment of the situation.

The great medical and surgical strides within the field of pediatric cardiology in the last twenty years have created a new population of patients whose medical and personal needs are complex and challenging. In this review, I have briefly outlined the issues and a scheme of classification and concurrent counseling. I suggest that innovative office visits that will broadly address the needs of the patient will be needed for all those followed through adolescence and young adulthood.

References

1 Orr D, Weller S, Satterwhite B, Pliss IB. Psychosocial implications of chronic illness in adolescence. J Paediat 1984;104:152-157.

2 Denhoff E, Feldman SA. Behavior perspectives in children with chronic disabilities: a paediatric viewpoint. J Dev Behav Paediat 1981;2:97-104.