home   genetic news   bioinformatics   biotechnology   literature   journals   ethics   positions   events   sitemap
  HUM-MOLGEN -> Genetic News | search  

The Importance of Written Information Packages in Support of Case-Finding Within Families at Risk for Inherited High Cholesterol

  February, 14 2006 10:37
your information resource in human molecular genetics
The Importance of Written Information Packages in Support of Case-Finding Within Families at Risk for Inherited High Cholesterol

Journal of Genetic Counseling

(Published online: 9 February 2006)

Hélène W. P. van den Nieuwenhoff (1, 3), Ilse Mesters (1), Joyce J. T. M. Nellissen (1), Anton F. Stalenhoef (2) and Nanne K. de Vries (1)

Author Affiliation:
(1) Department of Health Education and Health Promotion, Faculty of Health Sciences, University Maastricht, Maastricht, The Netherlands
(2) Department of Medicine, Radboud University Nijmegen Medical Center, Nijmegen, The Netherlands
3) University Maastricht, GVO, 6200, MD, Maastricht, P.O. 616, The Netherlands

Inherited High Cholesterol is treatable, but highly underdiagnosed. To detect undiagnosed blood relatives at a presymptomatic stage, in the Netherlands written information packages are available to facilitate family communication. To investigate the role of those packages in the detection of carriers, we conducted a qualitative evaluation (plus-minus method combined with semistructured interviews with index patients and relatives). Our data suggest that interviewees approved the family approach for finding carriers, although reluctantly. The packages aided family disclosure by reducing hesitation. However, index patients only informed first-degree relatives and generally communicated the risk only once. This may be due to the cultural context and a limited understanding of genetics. For relatives the packages served as a cue to action and as a legitimation to gain access to a diagnostic cholesterol test. Despite the value of these written materials, they should not be used as the only communication between index patient and relatives.

Author Contact:

Hélène W. P. van den Nieuwenhoff
Email: h.vandennieuwenhoff@gvo.unimaas.nl

(C) Journal of Genetic Counseling

Posted by: Tressie Dalaya

Message posted by: Trevor M. D'Souza

print this article mail this article
Latest News
Variants Associated with Pediatric Allergic Disorder

Mutations in PHF6 Found in T-Cell Leukemia

Genetic Risk Variant for Urinary Bladder Cancer

Antibody Has Therapeutic Effect on Mice with ALS

Regulating P53 Activity in Cancer Cells

Anti-RNA Therapy Counters Breast Cancer Spread

Mitochondrial DNA Diversity

The Power of RNA Sequencing

‘Pro-Ageing' Therapy for Cancer?

Niche Genetics Influence Leukaemia

Molecular Biology: Clinical Promise for RNA Interference

Chemoprevention Cocktail for Colon Cancer

more news ...

Generated by News Editor 2.0 by Kai Garlipp
WWW: Kai Garlipp, Frank S. Zollmann.
7.0 © 1995-2021 HUM-MOLGEN. All rights reserved. Liability, Copyright and Imprint.