Epidemiological projects

Quality of life and social situation (LESSIE)

Background

Owing to the considerable progress made over the past few decades in the surgical and interventional treatment of congenital heart defects, about 90% of patients now reach adulthood. There is thus a rising generation of young adults with chronic heart problems who need lifelong medical care. As a result of the good survival rate of patients with congenital heart defects, treatment nowadays has a strong focus on functional aspects, such as cardiac function, heart rhythm, or physical strength and endurance, and their long-term progression. Since the ultimate aim of treatment must necessarily be to improve the quality of patients’ lives, quality of life will take on increasing importance as the measure of success for any particular form of therapeutic treatment.

Objectives

For the first time, the LESSIE study collected data on health-related quality of life and the social situation of adults with CHD. The aim was 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 Register for Congenital Heart Defects were asked for demographic, medical and basic social data as well as data on the subjective health-related quality of life.

Methods

Results are drawn from a questionnaire-based survey in 676 adults with CHD and compared to age and sex-matched controls of a representative national survey. Subjective outcomes were measured as health-related quality of life (hrQoL), health and life satisfaction. The associations of the subjective well-being with the degree of severity of the underlying heart defect and socio-demographic factors such as educational and employment status were quantified in multiple linear regression models.

Recruitment of patients

676

Publications

Vigl M, Hager A, Bauer U, Niggemeyer E, Wittstock B, Koehn FM, Hess J, Kaemmerer H.
Sexuality and Subjective Wellbeing in Male Patients with Congenital Heart Disease.
Heart 2009; 95(14):1179-1183.
Abstract

Vigl M, Kaemmerer M, Seifert-Klauss V, Niggemeyer E, Nagdyman N, Trigas V, Bauer U, Schneider KTM, Berger F, Hess J, Kaemmerer H.
Contraception in Women with Congenital Heart Disease
Am J Cardiol 2010; 106(9): 1317-1321.
Abstract

Vigl M, Kaemmerer M,Niggemeyer E, Nagdyman N, Seifert-Klaus V, Trigas V, Bauer U, Schneider KT, Berger F, Hess J, Kaemmerer H.
Sexuality and Reproductive Health in Women with Congenital Heart Disease
Am J Cardiol. 2010; 105(4):538-41.
Abstract

Vigl M, Niggemeyer E, Hager A, Schwedler G, Kropf S, Bauer U.
The importance of socio-demographic factors for the quality of life of adults with congenital heart disease
Quality of Life Research 2011; 20(2):169-177.
Abstract

Contact

Dr. med. Matthäus Vigl
Project manager

National Register for Congenital Heart Defects
Augustenburger Platz 1
13353 Berlin

Phone: +49 30 45937277
E-Mail: info(at)kompetenznetz-ahf.de