Quality of life and social situation (LESSIE)

The medical and surgical progress of the past decades has resulted in dramatic improvements in terms of increased survival and thus given rise to a new population of chronically ill patients with congenital heart defects (CHDs) who pose new challenges. Where treatment but no cure is available, measurement of the quality of life gains essential value for long-term monitoring. It is used to assess the effects that the illness and its therapy have on the patients’ lives and includes aspects that go far beyond the biological and clinical manifestations of the disease.

For the first time, the LESSIE study is collecting data on health-related quality of life and the social situation of adults with CHD. The aim is to determine issues and factors that particularly influence an impaired quality of life. The disease’s long-term effects on the quality of life are as yet not sufficiently investigated, especially in adult patients with CHD. For this investigation, all adult members of the National Registry for Congenital Heart Defects are asked for demographic, medical and basic social data as well as data on the subjective health-related quality of life.

To gather the data a questionnaire is used that is sent to all patients of full age enrolled in the National Registry. Data from the public use file of the German National Health Survey of the Robert Koch Institute allow a comparison to be drawn between the health-related quality of life and most of the demographic variables with the data of a normative sample of the German population.

On the basis of the LESSIE study the patient group can be characterized and potential risk factors adding to an impaired quality of life can be identified. If certain groups turn out to be subjected to particular psychological strain or a higher risk, this knowledge can be used in future therapeutic practice. Further, gaps in medical care and the availability of treatment options are to be analyzed.