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)
(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.
Hélène W. P. van den Nieuwenhoff
(C) Journal of Genetic Counseling
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