Psychological functioning before predictive testing for Huntington's disease: The role of the parental disease, risk perception, and subjective proximity of the disease

Journal of Medical Genetics

Volumn 36, Issue 12, 1999, Pages 897-905

  Decruyenaere, Marleen ^a   Evers Kiebooms, Gerry ^a   Boogaerts, Andrea ^a   Cassiman, Jean Jacques ^a   Cloostermans, Trees ^a   Demyttenaere, Koen ^a   Dom, René ^a   Fryns, Jean Pierre ^a  

^a UNIVERSITY OF LEUVEN   (Belgium)

Author keywords

Huntington's disease; Predictive DNA testing; Psychological distress

Indexed keywords

ADULT; ARTICLE; DEPRESSION; FEMALE; GENETIC SCREENING; HUMAN; HUNTINGTON CHOREA; MAJOR CLINICAL STUDY; MALE; MENTAL PERFORMANCE; MULTIPLE REGRESSION; ONSET AGE; PATIENT COUNSELING; PERCEPTION; PREDICTION; PRIORITY JOURNAL; PSYCHOMETRY; RISK ASSESSMENT;

ADULT; AGE OF ONSET; DEPRESSION; FEMALE; HUMANS; HUNTINGTON DISEASE; MALE; PREDICTIVE VALUE OF TESTS; RISK FACTORS;

EID: 0033429216     PISSN: 00222593     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Article

References (56)

1. Wiggins S, Whyte P, Huggins M, et al. The psychological consequences of predictive testing for Huntington's disease. N Engl J Med 1992;327:1401-5.
2. Tibben A, Frets PG, Van de Kamp JJ, Niermeijer MF, 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;48:103-11.
3. Hayden MR, Bloch M, Wiggins S. Psychological effects of predictive testing for Huntington's disease. Behav Neurol Mov Disord 1995;65:201-10.
4. Almqvist EW, Bloch M, Brinkman R, Craufurd D, Hayden M on behalf of an international Huntington disease collaborative group. A worldwide assessment of the frequency of suicide, suicide attempts, or psychiatric hospitalization after predictive testing for Huntington disease. Am J Hum Genet 1999;64:1293-304.
5. Codori AM, Slavney R, Young C, Miglioretti DL, Brandt J. Predictors of psychological adjustment to genetic testing for Huntington's disease. Health Psych 1997;16:36-50.
6. Tibben A, Timman R, Bannink EC, Duivenvoorden HJ. Three year follow-up after presymptomatic testing for Huntington's disease in tested individuals and partners. Health Psych 1997;16:20-35.
7. Wahlin TB, Lundin A, Backman L, et al. Reactions to predictive testing in Huntington disease: case reports of coping with a new genetic status. Am J Med Genet 1997;73:356-65.
8. Kessler S. Predictive testing for Huntington disease: a psychologist's view. Am J Med Genet 1994;54:161-16.
9. Codori, A.M., Hanson, R, Brandt J. Self-selection in predictive testing for Huntington's disease. Am J Med Genet, 1994;54:167-73.
10. Decruyenaere M, Evers-Kiebooms G, Boogaerts A, et al. Predictive testing for Huntington's disease: risk perception, reasons for testing and psychological profile of test applicants. Genet Couns 1995;6:1-13.
11. Bundey S. Few psychological consequences of presymptomatic testing for Huntington's disease. Lancet 1997;349:4.
12. Evers-Kiebooms G, Decruyenaere M, Fryns JP, Demyttenaere K. Psychological consequences of presymptomatic testing for Huntington disease. Lancet 1997;349:808.
13. Tibben A, Roos RAC, Niermeijer MF.Psychological consequences of presymptomatic testing for Huntington disease. Lancet 1997;349:809.
14. Evers-Kiebooms G, Decruyenaere M. Predictive testing for Huntington's disease: a challenge for persons at risk and for professionals. Patient Educ Counsel 1998;35:15-26.
15. Tibben A. What is knowledge but grieving? On psychological effects of presyptomatic DNA-testing for Huntington's disease. Doctoral dissertation, Rotterdam, 1993.
16. Tibben A, Duivenvoorden HJ, Vegter-Van der Vlis, et al. Presymptomatic DNA testing for Huntington disease: identifying the need for psychological intervention. Am J Med Genet 1993;48:137-44.
17. 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;33:737-43.
18. DudokdeWit AC, Tibben A, Duivenvoorden HJ, Niermeijer MF, Passchier J, and the other members of the Rotterdam/Leiden Genetic Workgroup. Predicting adaptation to presymptomatic DNA testing for late onset disorders: who will experience distress? J Med Genet 1998;35:745-54.
19. DudokdeWit AC, Tibben A, Duivenvoorden HJ, et al. Psychological distress in applicants for predictive DNA testing for autosomal dominant, heritable, late onset disorders. J Med Genet 1997;34:382-90.
20. Hällström T. Major depression, parental mental disorder and early family relationships. Acta Psychiatr Scand 1987;75:259-63.
21. Rutter M. Stress, coping and development: some issues and some questions. In: Garmezy N, Rutter M, eds. Stress, coping and development in children. Baltimore: Johns Hopkins University Press, 1988:1-41.
22. Rodgers B. Reported parental behaviour and adult affective symptoms. 1. Associations and moderating factors. Psych Med 1996;26:51-61.
23. Rodgers B. Reported parental behaviour and adult affective symptoms. 2. Mediating factors. Psych Med, 1996;26:63-77.
24. Kessler RC, Davis CG, Kendler KS. Childhood adversity and adult psychiatric disorder in the US National Comorbidity Survey. Psych Med 1997;27:1101-19.
25. Rutter M. Pathways from childhood to adult life. J Child Psychol Psychiatry 1989;30:23-51.
26. Birtchnell J. Depression and family relationships: a study of young married women on a London housing estate. Br J Psychiatry 1988;153:758-69.
27. Folstein SE, Franz ML, Jensen BA, Chase GA, Folstein MF. Conduct disorder and affective disorder among the offspring of patients with Huntington's disease. Psych Med 1983;13:45-52.
28. Hans MB, Koeppen AH. Huntington's chorea. Its impact on the spouse. J Nerv Ment Dis 1980;168:209-14.
29. Folstein SE. Huntington's disease: a disorder of families. Baltimore: Johns Hopkins University Press, 1989.
30. Evers-Kiebooms G, Swerts A, Van den Berghe H. Partners of Huntington patients: implications of the disease and opinions about predictive testing and prenatal diagnosis. Genet Counsel 1990;1:151-9.
31. Kessler S. The spouse in the Huntington disease family. Family Systems Med 1993;11:191-9.
32. Kessler, S. Forgotten person in the HD family. Am J Med Genet 1993;48:145-50.
33. Nuttin J. Future time perspective and motivation. Leuven: University Press and Lawrence Erlbaum Associates, 1985.
34. Beck AT. Cognitive therapy and the emotional disorders. New York: International University Press, 1976.
35. Abramson LV, Seligman MEP, Teasdale JD. Learned helplessness in humans: critique and reformulation. J Abnormal Psychol 1978;87:49-74.
36. Butler G, Mathews A. Anticipatory anxiety and risk perception. Cogn Ther Res 1987;11:551-65.
37. Alloy LB, Ahrens AH. Depression and pessimism for the future: biased use of statistically relevant information in predictions for self versus others. J Pers Soc Psych 1987;52:366-78.
38. Bloch M, Adam S, Wiggins S, Huggins M, Hayden MR. Predictive testing for Huntington disease in Canada: the experience of those receiving an increased risk. Am J Med Genet 1992;42:499-507.
39. 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;42:508-15.
40. Spielberger CD, Gorsuch RL, Lushene RE. Manual for the State Trait Anxiety Inventory. Palo Alto: Consulting Psychologists Tests, 1970.
41. Van der Ploeg HM, Defares PB, Spielberger CD. Handleiding bij de Zelfbeoordelingsvragenlijst: een Nederlandstalige bewerking van de Spielberger State Trait Anxiety Inventory. New York: Swets & Zeitlinger, 1980.
42. Beck AT, Steer RA, Garbin M. Psychometric properties of the Beck Depression Inventory: twenty-five years of evaluation. Clin Psych Rev 1988;8:77-100.
43. Bouman TK, Luteijn F, Albertnagel FA, Van der Ploeg FA. Enige ervaringen met de Beck Depression Inventory. Gedrag Tijdsch Psych 1985;13:13-24.
44. Graham JR. The MMPI. A practical guide. New York: Oxford University Press, 1987.
45. Nuttin J, Beuten B. Handleiding bij de Persoonlijkheidsinventaris MMPI. Leuven: Studia Psychologica, 1969.
46. Barron F. An ego-strength scale which predicts response to psychotherapy. J Cons Psych 1953;17:327-33.
47. Siegel S, Castellan, NJ. Nonparametric statistics for the behavioral sciences. 2nd ed. New York: McGraw-Hill, 1988.
48. Brown GW, Harris T. Social origins of depression: a study of psychiatric disorder in women. London: Tavistock Publications, 1978.
49. Garmezy N, Rutter M. Stress, coping and development in children. Baltimore: The Johns Hopkins University Press: 1988.
50. Frets PG, Duivenvoorden HJ, Verhage F, Niermeijer MF, van de Berge S, Galjaard H. Factors influencing the reproductive decision after genetic counseling. Am J Med Genet 1990;35:496-502.
51. Welkenhuysen M, Evers-Kiebooms G, Decruyenaere M, Van den Berghe H. Unrealistic optimism and genetic risk. Psychol Health 1996;11:479-92.
52. Beck AT. The measurement of pessimism: the hopelessness scale. J Cons Clin Psych 1974;42:861-5.
53. Croyle R, Smith KR, Botkin JR, Baty B, Nash J. Psychological responses to BRCA1 mutation testing: preliminary findings. Health Psychol 1997;16:63-72.
54. Sarason IG, Sarason BR, Potter EH, Antoni MH. Life events, social support and illness. Psychosom Med 1985;47:156-63.
55. Van der Steenstraten I, Tibben A, Roos RA, Van de Kamp JJ, Niermeijer MF. Predictive testing for Huntington disease: nonparticipants compared with participants in the Dutch program. Am J Hum Genet 1994;55:618-25.
56. Decruyenaere M, Evers-Kiebooms G, Boogaerts A, et al. Nonparticipation in predictive testing for Huntington's disease: individual decision-making, personality and avoidant behaviour in the family. Eur J Hum Genet 1997;5:351-63.