TY - JOUR
T1 - The importance of written information packages in support of case-finding within families at risk for inherited high cholesterol
AU - van den Nieuwenhoff, H.W.P.
AU - Mesters, I.
AU - Nellissen, J.J.
AU - Stalenhoef, A.F.
AU - de Vries, N.K.
PY - 2006/1/1
Y1 - 2006/1/1
N2 - 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.
AB - 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.
U2 - 10.1007/s10897-005-9001-8
DO - 10.1007/s10897-005-9001-8
M3 - Article
C2 - 16468088
SN - 1059-7700
VL - 15
SP - 29
EP - 40
JO - Journal of Genetic Counseling
JF - Journal of Genetic Counseling
IS - 1
ER -