Cardiol Young 2006; 16: 67–75 © Cambridge University Press ISSN 1047-9511 doi: 10.1017/S1047951105002118 E VALUATION OF HEALTH-RELATED QUALITY OF LIFE becomes more and more important in those with congenital cardiac disease as an increasing number of patients survive, 1,2 and with recognition of the multitude of associated physical and psycho- social stresses. 3–5 According to an international con- sensus, 6 quality of life is defined as multi-dimensional construct integrating physical, emotional, and social well-being and functioning as perceived by the indi- vidual. 7 With regard to the importance of family func- tioning for the outcome of health in chronic paediatric conditions, 4 it is necessary to take account of the quality of life of not only the children, but also their parents. Multiple determinants of quality of life includ- ing disease-related and social stresses have been described so far. In accordance with the family stress and resilience model provided by McCubbin et al. 8 quality of life can be seen as the endpoint of adaptation to a bundle of stresses associated with chronic illness. Coping is considered as mediator variable between stresses and quality of life. The coexistence of disease- related and additional psycho-social stresses may exceed the ability of the family to cope, and have detrimental effects on quality of life. Moreover, social stresses may reflect a lack of social support, which is a known protective factor in coping with disease-related stresses. 9 It is necessary, therefore, to take account of both medical and social factors which contribute to the quality of life of families with a chronically ill child. Original Article The impact of the severity of disease and social disadvantage on quality of life in families with congenital cardiac disease * Lutz Goldbeck, Juliane Melches University Clinic for Child and Adolescent Psychiatry/Psychotherapy Ulm, Germany Abstract Objective: Increasing rates of survival have raised the question of medical and psychosocial factors contributing to quality of life of patients with congenital cardiac disease. We investigated the impact of the severity of disease, and social disadvantage, on the quality of life of patients and their primary caregivers. Methods: One hundred and thirty two families participated in a computer-assisted evaluation of their quality of life in a German outpatient centre for paediatric cardiac diseases. Quality of life for the patients was evaluated by a multi-dimensional proxy-measure. The quality of life of the caregivers was evaluated by a multi-dimensional self-reporting measure. Severity of the disease was evaluated by the responsible paediatrician. Social disadvantage was defined as single-parent status, ethnic minority status, unfinished parental education or professional train- ing, and/or unemployment. Analyses of variance were calculated with mild, moderate, or severe forms of dis- ease, and risk as opposed to no risk for social status, both factors being treated independently, and the quality of life of the patients and their caregivers as dependent variables. Results: We demonstrated significant effects of the severity of disease on the quality of life of the children, and of social disadvantage on the quality of life of both the children and their parents. A significant interactive effect indicated a cumulative negative impact of the severity of the disease and social disadvantage on the quality of life of the patients. Conclusion: Programmes providing psychosocial support for children with cardiac disease and their caregivers should consider risk factors which are both medical and social. Keywords: Children and adolescents; parents; psychosocial aspects; subjective health * This study was supported by grants of Ulmer Herzkinder e.V, Ulm (Germany) and Bundesverband herzkranke Kinder e.V., Aachen (Germany). Correspondence to: Lutz Goldbeck, University Clinic of Child and Adolescent Psychiatry/Psychotherapy Ulm, Steinhoevelstrasse 5, D-89075 Ulm, Germany. Tel: +49 731 500 33579; Fax: +49 731 500 41059; E-mail: lutz.goldbeck@ medizin.uni-ulm.de Accepted for publication 11 July 2005