Psykososiale problemer hos voksne med medfødt hjertefeil : en spørreundersøkelse av voksne, født med transposisjon av de store arterier

Abstract

Abstract : Aims: Previous studies report conflicting results regarding the prevalence of psycho-social problems among adults with complex congenital heart disease. The aim of the present study was to explore these issues in a homogenous group of patients with transposition of the great arteries (TGA). Material and methods: Thirty TGA-patients (15 men and 15 women) were invited to respond to a questionnaire developed specifically for the purposes of the study covering a wide range of psycho-social issues. All had undergone their corrective surgery during the first years of their lives – most of them during the 1980-ies, at OUS Rikshospitalet. The overall response rate was 60% (13 women, 5 men). Results: Five patients had experienced severe complications and reported frequent symptoms related to their disease (group A), seven had experienced complications but were relatively asymptomatic (group B), and six had neither experienced complications or severe symptoms (group C). Fifteen (83%) reported that they could participate normally in social activities, 12 (67%) had moderate or severe worries concerning their heart condition, and 5 (28%) had frequent worries about dying. Three (17%) reported that their heart condition had negative impact on their quality of life, but 6 (33%) gave the opposite answer. Twelve (67%) had experienced periods with severe anxiety or depression. The great majority wanted more focus on psycho-social issues during follow-up. In general, the psycho-social profile was less favourable in group A than in group C. Conclusion: Adult TGA-patients appear to be an inhomogenous group as far as psycho-social problems are concerned. The prevalence of such problems was strongly associated to whether or not the patients had experienced complications or had symptoms related to their heart condition. There seems to be a need for more focus on psycho-social issues during follow-up of these patients.