TY - JOUR
T1 - Predicting adaptation to presymptomatic DNA testing for late onset disorders
T2 - Who will experience distress?
AU - DudokdeWit, A. C.
AU - Tibben, A.
AU - Duivenvoorden, H. J.
AU - Niermeijer, M. F.
AU - Passchier, J.
AU - Lindhout, D.
AU - Meijers-Heijboer, E. J.
AU - Frets, P. G.
AU - Lodder, L. N.
AU - Trijsburg, R. W.
AU - Zoetewij, M. W.
AU - Klijn, J. G.M.
AU - Bröcker-Vriends, A.
AU - Van Haeringen, A.
AU - Helderman, A. T.J.M.
AU - Hilhorst-Hofstee, Y.
AU - Kant, S.
AU - Maat-Kievit, J. A.
AU - Oosterwijk, J. C.
AU - Van Der Smagt, J. J.
AU - Vegter-van Der Vlis, M.
AU - Vries-van Der Weerd, M. A.C.S.
AU - Zoeteweij, M. W.
AU - Bakker, E.
AU - Devilee, P.
AU - Losekoot, M.
AU - Tops, C.
AU - Cornelisse, C. J.
AU - Vasen, H. F.A.
PY - 1998/8/26
Y1 - 1998/8/26
N2 - The first comparative study on predicting post-test distress (conceptualised by intrusion and avoidance, measured with the Impact of Event Scale) after presymptomatic genetic testing for Huntington's disease (HD, n = 25), cancer syndromes (familial adenomatous polyposis (FAP, n = 23)), and hereditary breast and ovarian cancer (HBOC, n = 10) is reported. The variables with the highest predictive potential of post-test distress are presented. Participants who were depressed before the test were more distressed after testing, but we found that those who were anxious before the test were less distressed, that is, had less intrusive thoughts post-test. Other factors associated with a higher level of post-test intrusion were gender (being a woman), having children, and pre-test intrusion. Religion and being at risk for HBOC were associated with less post-test intrusion. Participants who showed avoidance behaviour before the test and those who had many people available for support showed more avoidance behaviour post-test. The test result did not additionally contribute to post-test distress. The prima facie simple notion that the test result, as such, determines the distress experienced seems to be a misrepresentation of the complex reality.
AB - The first comparative study on predicting post-test distress (conceptualised by intrusion and avoidance, measured with the Impact of Event Scale) after presymptomatic genetic testing for Huntington's disease (HD, n = 25), cancer syndromes (familial adenomatous polyposis (FAP, n = 23)), and hereditary breast and ovarian cancer (HBOC, n = 10) is reported. The variables with the highest predictive potential of post-test distress are presented. Participants who were depressed before the test were more distressed after testing, but we found that those who were anxious before the test were less distressed, that is, had less intrusive thoughts post-test. Other factors associated with a higher level of post-test intrusion were gender (being a woman), having children, and pre-test intrusion. Religion and being at risk for HBOC were associated with less post-test intrusion. Participants who showed avoidance behaviour before the test and those who had many people available for support showed more avoidance behaviour post-test. The test result did not additionally contribute to post-test distress. The prima facie simple notion that the test result, as such, determines the distress experienced seems to be a misrepresentation of the complex reality.
KW - Hereditary late onset disorders
KW - Predicting distress
KW - Presymptomatic dna testing
UR - http://www.scopus.com/inward/record.url?scp=0006309338&partnerID=8YFLogxK
M3 - Article
C2 - 9733033
AN - SCOPUS:0006309338
SN - 0022-2593
VL - 35
SP - 745
EP - 754
JO - Journal of Medical Genetics
JF - Journal of Medical Genetics
IS - 9
ER -