Quality of Life
Adults with congenital heart disease constitute an ever-increasing proportion of patients in cardiac clinics. The life course of each patient represents a joint responsibility of pediatric and adult care givers and both must provide supportive educational, vocational and social support. Socio-economic and educational disadvantages which affect the lives of so many young persons impact with greater force on handicapped children including those with congenital heart disease. Recently a group of Dutch investigators have begun to quantify the problems of psychosocial development (Van Rijen, 2003).
Many cardiac abnormalities are complex deviations from normal and the explanations offered may not be easily understood by the patients’ parents or the patients themselves. This may cause real as well as unfounded anxiety affecting the patients’ self-perception.
In the Baltimore-Washington Infant Study a study of the parents understanding of their infant’s congenital heart disease revealed favorable results for parents with biologic and health care occupations, but much misinformation among the others (Kaden, 1985). There is a need for comprehensive health education of the family to improve also the patients’ understanding. This would encompass caregivers in virtually all phases of life. Although this would be an extensive challenge it must be viewed in the light of the great investment already made in medical and surgical costs. Optimal personal development must be valued as much as the achievement of an improved circulation.
We have much to learn from the patients. We must assemble specific information on their feelings and problems: cyanosis, the blue color of lips and nail beds due to hypoxia, makes the patient feel different and depressed; the joy on turning pink after surgery is hard to describe! Other physical changes such as puffy face, swollen legs, pacemaker, limitation in activity, may similarly affect the patient’s self-esteem. Physicians may not have the answers to these concerns, but must not avoid discussing them and finding supportive care. Reassurance must be realistic and truthful. Outstanding support programs mandated in national legislation may not be known to patients and their families. A study of young adults showed that vocational rehabilitation programs were seldom used by young adults with congenital heart disease, but much more often used by patients with other disabilities such as mental retardation and blindness (Ferencz, 1976).
The quality of life of adults with congenital heart disease is dependent upon the quality of life in their earlier years. The intensive involvement of medical caretakers has benefited some adolescents, but is certainly wanting for most across the various socio-economic strata of our society. Thus all those concerned with the fate of children with congenital heart disease must find ways to protect them and to promote their participation in every available supportive program. This challenge concerns all educational and vocational specialists who may have the ability to improve the patient’s course.We are challenged to highlight their activities as part of a comprehensive medical, surgical and societal goal for all young persons with congenital heart disease.