 |
|
Patients' Attitudes Toward Detection of Heterozygous Familial Hypercholesterolemia
Lone K. Andersen, MD;
Henrik K. Jensen, MD, PhD;
Svend Juul, MD;
Ole Faergeman, MD, DMSc
Arch Intern Med. 1997;157(5):553-560.
Abstract
| |
Background
Molecular biology has improved the diagnostic abilities of physicians and enabled them to identify apparently healthy persons with a high risk of genetic disease.
Objective
To examine the attitudes toward detection of disease and the present well-being in persons at risk of disease with a modifiable outcome, in this case heterozygous familial hypercholesterolemia (FH) and their hypercholesterolemic relatives.
Materials and Methods
A questionnaire was developed that collected information on the impact on well-being at present and at the time of diagnosis of hypercholesterolemia and on attitudes toward screening family members for heterozygous FH. It was mailed to 62 index patients with heterozygous FH, which was defined by using clinical criteria, and 108 hypercholesterolemic relatives. The response rate was 88%. Results were related to demographic data, experience of psychological or physiologic reactions in relation to awareness of hypercholesterolemia, cardiovascular symptoms, lipidlowering drug treatment, and information on the DNA-based diagnosis.
Results
Of the respondents, anxiety was expressed by 44%, fear of coronary heart disease by 37%, and diminished well-being by 13%. These findings were most pronounced in persons who had experienced physiologic or psychological reactions at the time of diagnosis of hypercholesterolemia or who already had heart disease. Six percent regretted that they were aware of their disease diagnosis, and 84% were in favor of screening for affected individuals in families with a history of heterozygous FH.
Conclusions
The results indicated that a substantial proportion of persons with heterozygous FH had some degree of anxiety. A small minority regretted that they were informed of the diagnosis of heterozygous FH, however, and a majority were in favor of family screening for heterozygous FH.
Arch Intern Med. 1997;157:553-560
Author Affiliations
From the Department of Medicine and Cardiology, Aarhus Amtssygehus University Hospital (Drs Andersen, Jensen, and Faergeman) and the Department of Social Medicine and Epidemiology, Faculty of Health Sciences, University of Aarhus (Dr Juul), Aarhus, Denmark.
 CiteULike  Connotea  Del.icio.us  Digg  Reddit  Technorati  Twitter
What's this?
THIS ARTICLE HAS BEEN CITED BY OTHER ARTICLES
Heterozygous familial hypercholesterolemia: an underrecognized cause of early cardiovascular disease.
Yuan et al.
CMAJ 2006;174:1124-1129.
ABSTRACT
| FULL TEXT
Quality of life in a family based genetic cascade screening programme for familial hypercholesterolaemia: a longitudinal study among participants
van Maarle et al.
J. Med. Genet. 2003;40:e3-3.
FULL TEXT
Screening for familial hypercholesterolaemia
Kastelein
BMJ 2000;321:1483-1484.
FULL TEXT
Outcome of case finding among relatives of patients with known heterozygous familial hypercholesterolaemia
Bhatnagar et al.
BMJ 2000;321:1497-1497.
ABSTRACT
| FULL TEXT
|
