Psychosocial aspects of congenital heart disease in adulthood: A longitudinal cohort study of 20-33 years follow-up

Abstract

Adults with congenital heart disease form a rather new phenomenon. Improvements in surgical techniques over the last decades have lead to lower mortality rates for children born with a congenital heart disease, enabling more of them to grow into adulthood (Sparacino, 1994; Wren & O'Sullivan, 2001). Today, health care professionals encounter the first generation of adults with congenital heart disease. Adults with congenital heart disease do not only differ in medical status and history from the well-known cardiac population with acquired cardiac diseases, but also show different psychosocial characteristics and needs. Firstly, the age at onset of the cardiac disease differs considerably for adults with congenital heart disease compared to adults with acquired cardiac disease. For adults with congenital heart disease, the cardiac anomaly may not only affect their present adult life, but it may also have left its mark on their childhood. Experiences of growing up with a congenital heart disease might influence the patient’s functioning at adult age. Secondly, when growing up into adulthood, patients may be confronted with new problems associated with congenital heart disease in adulthood. These problems might concern finding a suitable employment or getting a mortgage (Allen et al., 1992; Celermajer & Deanfield, 1993; Gersony et al., 1993; Hart & Garson, 1993; Hellstedt, 1994; Mahoney et al., 1991; McGrath & Truesdell, 1994) or they may concern the experience of uncertainties or restrictions regarding sexuality and childbearing (Gantt, 1992; Mahoney et al., 1991; Somerville, 1998; Tong & Sparacino, 1994). Adults with congenital heart disease are in the disadvantageous position of being the first generation to experience these problems, since little is yet known about relevant medical and psychosocial aspects. For these reasons, adults with congenital heart disease should be considered as a new and distinct patient population with unique characteristics. Therefore, the medical course of congenital heart disease into adulthood, as well as the psychosocial development of adults with congenital heart disease, deserve special attention.