DISTRESS IN INDIVIDUALS FACING PREDICTIVE DNA TESTING FOR AUTOSOMAL-DOMINANT LATE-ONSET DISORDERS - COMPARING QUESTIONNAIRE RESULTS WITH IN-DEPTH INTERVIEWS

In 50% risk carriers for Huntington disease (n = 41), hereditary cereb ral hemorrhage with amyloidosis Dutch-type (n = 9) familial adenomatou s polyposis coli (n = 45) and hereditary breast and ovarian cancer (n = 24), pretest intrusion and avoidance (Impact of Event Scale), anxiet y and depression (Hospital Anxiety and Depression Scale), feelings of hopelessness (Beck Hopelessness Scale), and psychological complaints ( Symptom Checklist) were assessed to determine their psychological well -being, The manner of discussing the genetic disorder, the test, and i ts implications during a semistructured interview (reflecting on one's emotions without getting carried away or dismissing or minimizing the subject) was judged in terms of coherence, Participants at risk for n eurodegenerative disorders had higher anxiety and depression scores an d more psychological complaints than did those at risk for cancer synd romes, Those reporting high intrusion/high avoidance had higher anxiet y and depression scores and more psychological complaints than did tho se reporting low intrusion/low avoidance, However, the scoring of the interview showed that participants reporting high intrusion/high avoid ance were more reflective about their emotions without getting carried away or dismissing the subject (e.g., more coherent) than those repor ting low intrusion/low avoidance, This result suggests that participan ts with higher stress scores may be actively dealing with the emotiona l implications of the test, whereas those with low stress scores may ( as yet) be unable to face these implications, It is important to ident ify the strategy of coping with threat to provide suitable counseling and necessary guidance, However, long-term follow-up is needed to lear n the consequences of a denial coping strategy for those participating in a genetic testing program, (C) 1998 Wiley-Liss, Inc.