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InternationalJournal

of Cardiology, 9 (1985) 493-495

493

Elsevier

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 adolescent 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
transplantation 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
functioning 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,
DeSoto Street, Pittsburgh,
PA 15213, U.S.A.

0167-5273/85/$03.30

0 1985 Elsevier Science Publishers

B.V. (Biomedical

Division)

125

494

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/adolescents 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)

Outcome - normal health

Outcome - moderate to severe cardiac disease

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

Internalization of good/bad self


Sense of wholeness, going relationships
Beginning heterosexual relationships
Integration of new self, separation
from parents
Career/family launching

Fearful - feelings of being bad


Self absorbed - fear of ostracism
Peer problems - ostracised
Role problems; remain dependent

20+

Isolation from world, lonely

495

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 adolescent 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.