Adverse effects of predictive testing for Huntington disease underestimated: long-term effects 7-10 years after the test.
The 7-10-year psychological effects of presymptomatic testing for Huntington disease are described in 142 individuals and 104 partners. Questionnaires included the Beck Hopelessness Scale (A. T. Beck, A. Weissman, D. Lester, & L. Trexler, 1974), the Impact of Event Scale (M. J. Horowitz, N. Wilner. & W. Alvarez. 1979). and the General Health Questionnaire (D. P. Goldberg. 1972). Carriers and their partners were more distressed immediately after the test result, although their outlooks improved somewhat in the 2-3-year posttest period. However, they became more pessimistic thereafter, when approaching the age of onset. Carriers, who were lost to follow-up after disclosure of test results, reported more distress pretest than did retained carriers. This demonstrates that studies that report few harmful effects may have underestimated the real impact. Moreover, follow-up studies need to investigate time effects for longer than a few years.
Timman
Reinier
R
Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands. r.timman@erasmusmc.nl
Roos
Raymund
R
Maat-Kievit
Anneke
A
Tibben
Aad
A
D000328:Adult; D005260:Female; D005500:Follow-Up Studies; D006304:Health Status; D006579:Heterozygote; D006801:Humans; D006816:Huntington Disease / Q000175:diagnosis* / Q000235:genetics*; D008297:Male; D008967:Molecular Biology / Q000379:methods*; D010352:Patient Dropouts / Q000706:statistics & numerical data; D011237:Predictive Value of Tests; D011581:Psychological Tests; D011795:Surveys and Questionnaires; D013995:Time; D013997:Time Factors