Impact of arrhythmias on health-related quality of life in adults with congenital cardiac disease

2005 ◽  
Vol 15 (06) ◽  
pp. 627 ◽  
Author(s):  
Thiemo A. Irtel ◽  
Christian Vetter ◽  
Thomas Stuber ◽  
Alexa Kuemin ◽  
Thilo Heimes ◽  
...  
2002 ◽  
Vol 12 (5) ◽  
pp. 474-478 ◽  
Author(s):  
Mascha Kamphuis ◽  
Hubert W. Vliegen ◽  
Ton Vogels ◽  
Koos H. Zwinderman ◽  
Ernst E. van der Wall ◽  
...  

Objective: To discuss the need for continuing cardiac surveillance in adults with hemodynamically insignificant congenital cardiac disease. Methods: In 82 patients with mild congenital cardiac malformations, aged from 17 to 32 years, we investigated the subjective health status, the health-related quality of life, any difficulties encountered in daily life, the regularity of follow-up, current diagnosis, and antibiotic prophylaxis. Results: The subjective health status, and the health-related quality of life, did not differ from those of the general population. Nevertheless, patients experienced unnecessary difficulties with choice of sport, obtaining insurance cover, and education. After clinical re-evaluation, diagnosis and antibiotic regimes had to be changed in 9 patients (11%). Conclusions: Patients with a mild congenital cardiac malformation consider themselves to be in good health. So as to fine tune the diagnosis, and update the information supplied to the patients, we suggest that at least a cardiological assessment be carried out at the age of 16 to 18 years. In this way, patients might be protected from unnecessary difficulties, such as restrictions for sport or the charging of unjustifiably high rates for insurance.


2012 ◽  
Vol 240 (10) ◽  
pp. 1188-1193 ◽  
Author(s):  
Lisa M. Freeman ◽  
John E. Rush ◽  
Mark A. Oyama ◽  
Kristin A. MacDonald ◽  
Suzanne M. Cunningham ◽  
...  

2011 ◽  
Vol 22 (1) ◽  
pp. 13-17 ◽  
Author(s):  
Jo Wray ◽  
Rodney Franklin ◽  
Kate Brown ◽  
Jacqueline Blyth ◽  
Bradley S. Marino

AbstractIntroductionTo anglicise an American – that is, English language – disease-specific health-related quality of life measure, using the Paediatric Cardiac Quality of Life Inventory, for children in the age group of 8–12 years and adolescents in the age group of 13–18 years with cardiac disease, and to assess conceptual equivalence of the American and British versions.MethodsA process of forward and backward translation of the measure was undertaken before focus groups and individual interviews with 40 participants – that is, 20 children/adolescents with cardiac disease and 20 parents of children/adolescents with cardiac disease – to determine their understanding of the meaning of the questions.ResultsInterviews established that participants understood the meaning of the questions, although some found it difficult to explain the meaning of questions in which the language was explicit and wanted instead to answer the individual questions as they applied to them/their child. There was agreement that all versions of the questionnaire were relevant and comprehensive, and that the length of the questionnaires was acceptable and practical.ConclusionsThe anglicised version of the Paediatric Cardiac Quality of Life Inventory appears to be a linguistically valid measure of health-related quality of life for children and adolescents with cardiac disease. The psychometric properties of the anglicised Paediatric Cardiac Quality of Life Inventory are now being tested in a multi-centre study in the United Kingdom.


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