Psychosocial impact of predictive testing for huntington disease on support persons

American Journal of Medical Genetics - Neuropsychiatric Genetics

Volumn 96, Issue 3, 2000, Pages 353-359

  Williams, Janet K ^a   Schutte, Debra L ^a   Holkup, Patricia A ^a   Evers, Catherine ^b   Muilenburg, Ann ^b  

^a UNIVERSITY OF IOWA COLLEGE OF NURSING   (United States)

^b UNIVERSITY OF IOWA HOSPITALS AND CLINICS   (United States)

Author keywords

Family; Genetic counseling; Huntington disease; Predictive testing; Support person

Indexed keywords

ADULT; AGED; ANXIETY; ARTICLE; ATTITUDE; CAREGIVER; CLINICAL ARTICLE; EMOTIONAL STRESS; FAMILY; FEMALE; GENE MUTATION; GENETIC COUNSELING; GENETIC RISK; HUMAN; HUNTINGTON CHOREA; MALE; PRIORITY JOURNAL; PSYCHOSOCIAL CARE; SOCIAL SUPPORT;

ADAPTATION, PSYCHOLOGICAL; ADULT; ANXIETY; CAREGIVERS; DATA COLLECTION; FAMILY; GENETIC COUNSELING; GENETIC SCREENING; HUMANS; HUNTINGTON DISEASE; INTERVIEWS; RETROSPECTIVE STUDIES; STRESS, PSYCHOLOGICAL;

EID: 0034640679     PISSN: 15524841     EISSN: 1552485X     Source Type: Journal    
DOI: 10.1002/1096-8628(20000612)96:3<353::AID-AJMG23>3.0.CO;2-9     Document Type: Article

References (24)

1. Benjamin C, Skirton H, Clancy T, Barnes C. 1998. Predictive testing protocols: who benefits? J Med Genet 35:S17.
2. Chong S, Almqvist E, Telenius H, LaTray L, Nichol K, Bourdelat-Parks B, Goldberg Y, Haddad B., Richards F, Sillence D, Greenberg C, Ives E, Van den Engh G, Hughes M, Hayden M.1997. Contribution of DNA sequence and CAG size to mutation frequencies of intermediate alleles for Huntington disease: evidence from single sperm analyses. Hum Molec Gen 6:301-309.
3. Codori A, Brandt J. 1994. Psychological costs and benefits of predictive testing for Huntington disease. Am J Med Genet 54: 174-184.
4. Collins, F. 1999. Shattuck lecture-medical and societal consequences of the human genome project. New Engl J Med 341:28-37.
5. Croyle R, Achilles J, Lerman C. 1997a. Psychologic aspects of cancer genetic testing. Cancer Suppl 80:569-575.
6. Croyle R, Smith K, Botkin J, Baty B, Nash J. 1997b. Psychological responses to BRCA1 mutation testing: preliminary findings. Health Psychol 16:63-72.
7. DudokdeWit A, Tibben A, Duivenvoorden H, Frets P, Zoeteweij M., Losekoot M., Haeringen A, Niermeijer M., Passchier J, and the other members of the Rotterdam/Leiden Genetics Workgroup. 1997. Psychological distress in applicants for predictive DNA testing for autosomal dominant, heritable, late onset disorders. J Med Genet 34:382-390.
8. Horowitz M, Wilner N, Alvarez W.1979. The impact of event scale: A measure of subjective stress. Psychosom Med 41:209-218.
9. Huggins M, Bloch M, Wiggins S, Adam S, Suchowersky O, Trew M, Klimek M, Greenberg C, Eleff M, Thompson L, Knight J, MacLeod P, Girard K, Theilmann J, Hedrick A, Hayden M. 1992. Predictive testing for Huntington Disease in Canada: adverse effects and unexpected results in those receiving a decreased risk. Am J Med Genet 42:508-515.
10. Kessler S. 1993. Forgotten person in the Huntington family. Am J Med Genet 48:145.
11. Kessler S. 1994. Predictive testing for Huntington disease: a psychologist's view. Am J Med Genet (Neurospychiatr Genet) 54:161-166.
12. Knafl K, Howard M. 1984. Interpreting and reporting qualitative research. Res Nurs Health 7:17-24.
13. Knafl K, Webster D. 1988. Managing and analyzing qualitative data: A description of tasks, techniques, and materials. West J Nurs Res 10: 195-218.
14. Nance M. 1996. Invited editorial: Huntington disease - another chapter rewritten. Am J Hum Genet 59:1-6.
15. Quaid K, Wesson M. 1995. Exploration of the effects of predictive testing for Huntington Disease on intimate relationships. Am J Med Genet 57:46-51.
16. Roos R, Veger-van de Vlis M, Tibben A, Skraastad M, Person P. 1990. Procedure en eerste resultaten van presymptomatich DNA-onderzoek bij de chorea van Huntington,(Procedure and first results of presymptomatic DNA-testing for Huntington). Ned Tijdschr Geneeskd 134:704-707.
17. Spielberger C.1983. State-trait anxiety inventory for adults (Form Y). Palo Alto, CA: Mind Garden.
18. Tibben A, Veger-van der Vlis M, Niermeijer M. 1990. Testing for Huntington's disease with support for all parties. Lancet 335:553.
19. Tibben A, Duivenvoorden H, Veter-van der Vlis M, Niermeijer M, Frets P, van de Kamp J, Roose R, Rooijmans H, Verhage F. 1993a. Presymptomatic DNA testing for Huntington disease: identifying the need for psychological intervention. Am J Med Genet (Neuropsychiatr Genet) 48:137-144.
20. Tibben A, Frets P, van de Kamp J, Niermeijer M, Veger-van der Vlis M, Roos R, van Ommen G, Duivenvoorden H, Verhage F. 1993b. Presymptomatic DNA-testing for Huntington disease: Pretest attitudes and expectations of applicants and their partners in the Dutch program. Am J Med Genet (Neuropsychiatr Genet) 48:10-16.
21. Tibben A, Timman R, Bannink E, Duivenvoorden, H. 1997. Three-year follow-up after presymptomatic testing for Huntington's disease in tested individuals and partners. Health Psychol 16:20-35.
22. Touchette N, Holtzman N, Davis J, Feetham S. 1997. Toward the 21st century: Incorporating genetics into primary health care. Plainview NY: Cold Spring Harbor Laboratory Press.
23. Went L, Broholm J, Cassiman J, Craufurd D, Falek A, Farmer-littel C, Hayden M, Kapp R, Krahnene K, Martinex-Descals A, Mol M, Myrianthopoulos N, Petit H, Quaid K, De Somviele C, Taylor E, Tyler A, Walker R, Wexler N. 1994. Guidelines for the molecular genetics predictive test in Huntington's disease. J Med Genet: 555-559.
24. Zilberg N, Weiss D, Horowitz M.1982. Impact of event scale: a cross-sectional validation study and some empirical evidence supporting a conceptual model of stress response syndromes. J Consult Clin Psychol 50:407-414.