Predictive diagnostics in Chorea Huntington: Psychotherapeutic implications for counselling;Prädiktive diagnostik bei Chorea Huntington: Psychotherapeutische aspekte der beratung von risikopersonen

Psychiatrische Praxis

Volumn 33, Issue 5, 2006, Pages 211-217

  Richartz Salzburger, Elke ^a   Mau Holzmann, Ulrike ^b   Schott, Klaus Joachim ^a   Buchkremer, Gerhard ^a  

^a UNIVERSITY HOSPITAL TÜBINGEN   (Germany)

^b Abteilung Molekulare Genetik   (Germany)

Author keywords

[No Author keywords available]

Indexed keywords

COPING BEHAVIOR; FAMILY; FAMILY COUNSELING; HUMAN; HUNTINGTON CHOREA; INHERITANCE; MOLECULAR GENETICS; MOTIVATION; PSYCHOTHERAPY; REVIEW;

ADAPTATION, PSYCHOLOGICAL; GENETIC COUNSELING; GENETIC PREDISPOSITION TO DISEASE; GENETIC SCREENING; HUMANS; HUNTINGTON DISEASE; MOTIVATION; PSYCHOTHERAPY; SICK ROLE; UNCONSCIOUS (PSYCHOLOGY);

EID: 33745915818     PISSN: 03034259     EISSN: None     Source Type: Journal    
DOI: 10.1055/s-2005-866996     Document Type: Review

References (45)

1. Zühlke C, Thies U. Chorea Huntington: Molekulargenetische Grundlagen, Mutationsnachweis und prädiktive Diagnostik. Nervenarzt 1996; 67: 25-35
2. Harper PS. Huntington Disease. London: WB Saunders Co, 1996
3. Gusella JF, Wexler NS, Conneally PM et al. A polymorphic DNA marker genetically linked to Huntington's disease. Nature 1983; 306: 234-238
4. Huntingtons's Disease Collaborative Research Group. A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington' disease chromosomes. Cell 1993; 72: 971-983
5. Tibben A, Niermeijer MF, Roos RAC et al. Understanding the low uptake of presymptomatic DNA-testing for Huntington's disease. Lancet 1992; 340: 1416
6. Laccone F, Engel U, Holonski-Feder E et al. DNA analysis of Huntington's disease. Five years of experience in Germany, Austria, and Switzerland. Neurology 1999; 53: 801-806
7. Hayden MR. Predictive testing for Huntington's disease: the calm after the storm. Lancet 2000; 356: 1944-1945
8. Creighton S, Almquist EW, MacGregor D et al. Predictive, prenatal and diagnostic genetic testing for Huntingtons' disease: the experience in Canada from 1987 to 2000. Clin Genet 2003; 63: 462-475
9. Harper PS, Lim C, Craufurd D. Ten years of presymptomatic testing for Huntington's disease: the experience of the UK Huntington's Disease Prediction Consortium. J Med Genet 2000; 37: 567-571
10. Kessler S. Predictive Testing for Huntington's Disease: A Psychologist's View. Am J MedGen 1994; 54: 161-166
11. Kreuz FR. Attitudes of german persons at risk for Huntington's Disease toward predictive and prenatal testing. Genetic counselling 1996; 7: 303-311
12. Evers-Kiebooms G, Swerts A, Cassiman JJ, Berghe H Van den. The motivation of at risk individuals and their partners in deciding for or against predictive testing for Huntington's disease. Clin Genet 1989; 54: 174-184
13. Tibben A. Presymptomatic testing for Huntington's disease. Am J Med Genet 1993; 48: 103-111
14. Codori AM, Hanson R, Brandt J. Self-selection in predictive testing for Huntington's disease. Am J Med Genet 1994; 54: 167-173
15. Lazarus RS, Folkman S. Stress, appraisal, and coping. New York: Springer, 1994
16. Copley TT, Wiggins S, Dufrasne S et al. Are we all of one mind? Clinicians' and patients' opinions regarding the development of a service protocol for predictive testing for Huntington's disease. Am J Med Genet 1995; 58: 59-69
17. Bloch M, Adam S, Fuller A et al. Diagnosis of Huntington's disease: A model for the stages of psychological response based on experience of a predictive testing program. Am J Med Genet 1993; 47: 368-374
18. Quaid KA. Presymptomatic testing for Huntington's disease: The U.S. experience. Am J Hum Genet 1993; 51: 1063
19. Codori AM, Brandt J. Psychological costs and benefits of predictive testing for Huntington's disease. Am J Med Genet 1994; 54: 174-184
20. Tibben A, Frets PG, Kamp JJP Van de et al. On attitudes and appreciation 6 months after predictive DNA-testing for Huntington's disease in the Dutch program. Am J Med Genet 1993; 48: 103-111
21. Huggins M, Bloch M, Wiggins S et al. Predictive testing for Huntington disease in Canada: Adverse effects and unexpected results in those receiving a decreased risk. Am J Med Genet 1992; 42: 508-515
22. Sobel KS, Cowan DB. Impact of genetic testing for Huntington disease on the family system. Am J Med Gen 2000; 90: 49-59
23. Decruyenaere M, Evers-Kiebooms G, Cloostermans T, Boogaerts A, Demyttenaere K, Dom R, Fryns JP. Predictive testing for Huntingon's disease: relationship with partners after testing. Clin Genet 2004; 65: 24-31
24. Wiggins S, Whyte P, Huggins M et al. The psychological consequences of predictive testing for Huntingtons's disease. New Engl J Med 1992; 327: 1401-1405
25. Hayden MR. Predictive testing in Huntington's disease. Are we ready for widespread community implementation? Am J Med Genet 1991; 40: 515-517
26. Lawson K, Wiggins S, Green T et al. Adverse psychological events occurring in the first year after predictive testing for Huntington's disease. The Canadian Collaborative Study Predictive Testing. J Med Genet 1996; 33: 856-862
27. DudokdeWit AC, Tibben A, Duivenvoorden HJ, Niermeijer MF, Passchier J. Distress in individuals facing predictive DNA testing for autosomal dominant late onset disorders: Comparing questionnaire results with in-depth interviews. Am J Med Genetic 1998; 75: 62-74
28. Almquist EW, Bloch M, Brinkman R et al. A worldwide assessment of the frequency of suicide, suicide attempts, or psychiatric hospitalization after predictive testing for Huntington disease. Am J Hum Genet 1999; 64: 1293-1304
29. Almquist EW, Brinkman RR, Wiggins S, Hayden R. Psychological consequences and predictors of adverse events in the first 5 years after predictive testing for Huntingtons' disease. Clin Genet 2003; 64: 300-309
30. Timman R, Roos R, Maat-Kievit A, Tibben A. Adverse effects of predictive testing for Huntington's disease underestimated: long-term effects 7-10 years after the test. Health Psychol 2004; 23: 189-207
31. Evers-Kiebooms G. Predictive testing for Huntington's disease in Belgium. J Psychosom Obstet Gynecol 1990; 11: 61-72
32. Decruyenaere M, Evers-Kiebooms G, Boogaerts A et al. Prediction of psychological functioning one year after the predictive test for Huntington's disease and impact of the test result on reproductive decision making. J Med Genet 1996; 33: 737-743
33. International Huntington Association (IHA) and the World Federation of Neurology (WFN) Research Group on Huntington's Chorea. Guidelines for the molecular genetics predictive test in Huntington's disease. Neurology 1994; 44: 1533-1536
34. Sharpe NF. Informed consent and Huntington's disease: A model for communication. Am J Med Gen 1994; 50: 236-239
35. Meincke U, Kosinski CH, Zerres K, Maio G. Psychiatrische und ethische Aspekte genetischer Diagnostik am Beispiel Huntington. Nervenarzt 2003; 74: 413-419
36. Müller A, Kreuz FR. Copingstrategien für die Huntingtonsche Krankheit. Neurol Rehabil 1998; 4: 71-75
37. Laplanche J, Pontalis J-B. Das Vokabular der Psychoanalyse. Frankfurt a. M.: Suhrkamp, 1972: 595-598
38. Beutel M. Zur Erforschung der Verarbeitung chronischer Krankheit: Konzeptualisierung, Operationalisierung und Adaptivität von Abwehrprozessen am Beispiel der Verleugnung. Psychother med Psychol 1985; 35: 295-302
39. Steffens W, Kächele H. Abwehr und Bewältigung - Mechanismen und Strategien. In: Kächele H, Steffens W (Hrsg): Bewältigung und Abwehr. Beiträge zur Psychologie und Psychotherapie schwerer körperlicher Krankheiten. Berlin, Heidelberg: Springer, 1988: 1-50
40. Richartz E, Frank C. Psychodynamisch orientierte Beratung im Rahmen prädiktiver Diagnostik bei Chorea Huntington. Psychiat Prax 2004; 31: 255-258
41. Steenstraaten IM Van der, Tibben A, Roos RAC et al. Predictive testing for Huntington's disease: Nonparticipants compared with participants in the Dutch program. Am J Hum Genet 1994; 55: 618-625
42. Meissen GJ, Mastromauro CA, Kiely DK et al. Understanding the decision to take the predictive test for Huntington's disease. Am J Med Genet 1991; 39: 404-410
43. Binedell J, Soldan JR. Nonparticipation in Huntington's Disease Predictive testing: reasons for caution in interpreting findings. J of Genetic Counseling 1997; 6: 419-432
44. Speit D. Erfahrungen mit der psychotherapeutischen Begleitung vor prädiktiver DNA-Diagnostik. Deutsche Huntington Hilfe 1993; 93: 7-11
45. Tassicker RJ. Psychodynamic theory and counselling in predictive testing for Huntington's disease. J Genet Couns 2005; 14: 99-107