How disturbing is it to be approached for a genetic cascade screening programme for familial hypercholesterolaemia?

Psychological impact and screenees' views

Journal article (2001)

Authors

M. C. Van Maarle Universiteit van Amsterdam
M. E.A. Stouthard Universiteit van Amsterdam
P.J. Marang-van de Mheen Universiteit van Amsterdam
Niek S. Klazinga Universiteit van Amsterdam
G. J. Bonsel Universiteit van Amsterdam
Affiliation
External organisation
Quality of life Familial hypercholesterolaemia Genetic screening Psychological impact
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Published Date

2001

Language

English

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Affiliation

External organisation

Abstract

Objectives: To assess the screenees' views on, and the psychological impact of, a family-based genetic screening programme for familial hypercholesterolaemia (FH) and to evaluate non-participation. Methods: Self-administered questionnaires were filled out at the time of screening and after communication of the test result. Non-participants were interviewed by phone. Results: Of the people approached for screening, 2% did not participate. These 2% were not interested, had already been clinically diagnosed, or were afraid of insurance consequences. 677 screenees participated, of whom 215 (32%) tested FH positive. Less than 5% of the screenees were critical of the approach and the information provided. 20% of the screenees expressed feelings of social pressure. Effects on mood were minimal to absent, as were general 'quality of life' effects. Conclusions: Screening for FH is highly acceptable to screenees, although social pressure is prevalent. Only a small percentage of people being approached did not participate.