Documenti di Didattica
Documenti di Professioni
Documenti di Cultura
493
Elsevier
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
B.V. (Biomedical
Division)
125
494
TABLE 1
Psychosocial age outcomes.
Age (yr)
7-10
11-13
14-16
17-19
20+
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.