It is difficult to grow up as normally as possible and at the same time acquire a balanced view of oneself as a patient with a chronic condition who needs to be vigilant of many medical and life style constraints.

Public funding programs, such as the Crippled Children’s Program, were the first to raise questions about the eventual outcome of early treatments in terms of patient behavior and disease prevention. An early study (Artis,1974) was directed to 102 young men who had been patients in a Children’s Hospital with rheumatic or congenital heart disease. It was distressing to find that they were quite ignorant of their own medical status and also failed to be aware of available supportive community programs.

Adult patients often report discrimination in employment and insurance. Was it possible that the patients themselves contributed to these difficulties by mistaken impressions of their own cardiac status? Another study of 131 patients, aged 14-21 years demonstrated serious gaps in their health knowledge with important implications for medical and social risks (Ferencz, 1980)

Now twenty years later new studies show the same uncertainty and lack of preparation for long term preventive behavior (Kantoch, 1997, Moons, 2001, Dore, 2002).

It is clear that the nature of one’s own cardiac defect is not properly understood by the patients, nor, probably by their parents. This calls for more concentrated efforts in patient education: the intelligent guidance of patient and family has to become a clearly defined responsibility of the medical, genetic and rehabilitative staff who work to bridge the gap between pediatric, adolescent and adult services.

Selected References