Psychological well-being in persons affected by Huntington's disease: A comparison of at-risk, prodromal, and symptomatic groups

Journal of Health Psychology

Volumn 18, Issue 3, 2013, Pages 408-418

  Chisholm, Lauren Zeranski ^a   Flavin, Kaitlin T ^a   Paulsen, Jane S ^b   Ready, Rebecca ^a  

^a UNIVERSITY OF MASSACHUSETTS   (United States)

^b UNIVERSITY OF IOWA   (United States)

Author keywords

At risk Huntington's disease; Huntington's disease; Mental health; Prodromal Huntington's disease

Indexed keywords

ADULT; ARTICLE; COMPARATIVE STUDY; DEPRESSION; FEMALE; HUMAN; HUNTINGTON CHOREA; MALE; MIDDLE AGED; PRODROMAL SYMPTOM; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; QUESTIONNAIRE; RISK ASSESSMENT; SATISFACTION; SEX RATIO;

ADULT; DEPRESSION; FEMALE; HUMANS; HUNTINGTON DISEASE; MALE; MIDDLE AGED; PERSONAL SATISFACTION; PRODROMAL SYMPTOMS; QUALITY OF LIFE; QUESTIONNAIRES; RISK ASSESSMENT; SEX DISTRIBUTION;

EID: 84877945125     PISSN: 13591053     EISSN: 14617277     Source Type: Journal    
DOI: 10.1177/1359105312444646     Document Type: Article

References (40)

1. Beck AT, Steer RA and Brown GK (1996) Beck Depression Inventory - 2nd Edition. San Antonio, TX: Psychological Corporation.
2. Beglinger LJ, Paulsen JS, Watson DB, et al. (2008) Obsessive and compulsive symptoms in prediagnosed Huntington's disease. Journal of Clinical Psychiatry 69: 1758-1765.
3. Codori AM and Brandt J (1997) Psychological costs and benefits of predictive testing for Huntington's disease. Health Psychology 16: 36-50.
4. Cohen S, Kamarck T and Mermelstein R (1983) A global measure of perceived stress. Journal of Health and Social Behavior 24: 385-396.
5. Conneally PM (1984) Huntington's disease: Genetics and epidemiology. American Journal of Human Genetics 36: 506-526.
6. Craufurd D, Dodge A, Kerzin-Storrar L and Harris R (1989) Uptake of presymptomatic predictive testing for Huntington's disease. Lancet 2: 603-605.
7. Diener E, Emmons RA, Larsen RJ and Griffin S (1985) The Satisfaction with Life Scale. Journal of Personality Assessment 49: 71-75.
8. Duff K, Paulsen JS, Beglinger LJ, Langbehn DR and Stout JC (2007) Psychiatric symptoms in Huntington's disease before diagnosis: The Predict-HD Study. Biological Psychiatry 62: 1341-1346.
9. Duff K, Paulsen JS, Beglinger LJ, et al. (2010) 'Frontal' behaviors before the diagnosis of Huntington's disease and their relationship to markers of disease progression: Evidence of early lack of awareness. Journal of Neuropsychiatry and Clinical Neurosciences 22: 196-207.
10. Evers-Kiebooms G and Decruyenaere M (1998) Predictive testing for Huntington's disease: A challenge for persons at risk and for professionals. Patient Education and Counseling 25: 15-26.
11. Evers-Kiebooms G, Decruyenaere M, Fryns JP and Demyttenaere K (1997) Psychological consequences of presymptomatic testing for Huntington's disease. Lancet 349: 808.
12. Folstein SE, Besson JAO, Bremner KP, Jensen BA and Folstein MF (1983) The association of affective disorder with Huntington's disease in a case series and in families. Psychology Medicine 13: 537-542.
13. Helder DR, Kaptein AA, Van Kampen GMJ, Van Houwelingen HC and Roos RAC (2001) Impact of Huntington's disease on quality of life. Movement Disorders 16: 325-330.
14. Ho AK, Gilbert AS, Mason SL, Goodman AO and Barker RA (2009) Health-related quality of life in Huntington's disease: Which factors matter most? Movement Disorders 24: 574-578.
15. Hoth KF, Paulsen JS, Moser DJ, Tranel D, Clark LA and Bechara A (2007) Patients with Huntington's disease have impaired awareness of cognitive, emotional, and functional abilities. Journal of Clinical and Experimental Neuropsychology 29: 365-376.
16. Huntington Society of Canada (2009) Living at risk for HD. Available at: http://www.huntingtonsociety.ca/english/uploads/Living-at-risk-for-HD.pdf.
17. James BD, Xie SX and Karlawish JHT (2005) How do patients with Alzheimer disease rate their overall quality of life? American Journal of Geriatrics Psychiatry 13: 484-490.
18. Julien CL, Thompson JC, Wild S, et al. (2007) Psychiatric disorders in preclinical Huntington's disease. Journal of Neurology, Neurosurgery, and Psychiatry 78: 939-943.
19. Karlawish JHT, Casarett DJ, James BD, Tenhave T, Clark CM and Asch DA (2003) Why would caregivers not want to treat their relative's Alzheimer's disease? Journal of the American Geriatrics Society 51: 1391-1397.
20. McCabe MP, Firth L and O'Connor E (2009) Mood and quality of life among people with progressive neurological illnesses. International Journal of Clinical Health Psychology 9: 21-35.
21. Paulsen JS and Robinson RG (2001) Huntington's disease. In: Hodges J (ed.) Early-Onset Dementia: A Multidisciplinary Approach. Cambridge, UK: Cambridge University Press, pp. 338-366.
22. Paulsen JS, Hoth KF, Nehl C and Stierman L (2005a) The Huntington Study Group: Critical periods of suicide risk in Huntington's disease. American Journal of Psychiatry 162: 725-731.
23. Paulsen JS, Nehl C, Hoth KF, et al. (2005b) Depression and stages of Huntington's disease. Journal of Neuropsychiatry and Clinical Neurosciences 17: 496-502.
24. Paulsen JS, Ready RE, Hamilton JM, Mega MS and Cummings JL (2001) Neuropsychiatric aspects of Huntington's disease. Journal of Neurology, Neurosurgery, and Psychiatry 71: 310-314.
25. Pflanz S, Besson JA, Ebmeier KP and Simpson S (1991) The clinical manifestation of mental disorder in Huntington's disease: A retrospective case record study of disease progression. Acta Psychiatrica Scandinavica 83: 53-60.
26. Quaid KA and Morris M (1993) Reluctance to undergo predictive testing: The case of Huntington disease. American Journal of Medical Genetics 45: 41-45.
27. Quarrell O (2004) Huntington's Disease: The Facts. New York: Oxford University Press.
28. Ready RE and Paulsen JS (under review) Development of the Quality of Life-Huntington's Disease Scale.
29. Ready RE, Mathews M, Leserman A and Paulsen JS (2008) Patient and caregiver quality of life in Huntington's disease. Movement Disorders 23: 721-726.
30. Ready RE, O'Rourke JJF and Paulsen JS (2011) Quality of life in prodromal HD: Qualitative analyses of discourse from participants and companions. Neurology Research International.
31. Robins WTB, Backman L, Lundin A, Haegermark A, Winblad B and Anvret M (2000) High suicidal ideation in persons testing for Huntington's disease. Acta Neurologica Scandinavica 102: 150-161.
32. Roos RAC, Hermans J, Vegter-van der Vlis M, Van Ommen GJB and Bruyn GW (1993) Duration of illness in Huntington's disease is not related to age at onset. Journal of Neurology, Neurosurgery, & Psychiatry 56: 98-100.
33. Tibben A (2007) Predictive testing for Huntington's disease. Brain Research Bulletin 72: 165-171.
34. Tibben A, Frets PG, Van de Kamp JJP, et al. (1993) On attitudes and appreciation 6 months after predictive DNA testing for Huntington's disease in the Dutch program. American Journal of Medical Genetics 48: 103-111.
35. Tibben A, Niermeijer MF, Roos RC, et al. (1992) Understanding the low uptake of presymptomatic DNA-testing for Huntington's disease. Lancet 340: 1416.
36. Tibben A, Timman R, Bannink EC and Duivenvoorden HJ (1997) Three year follow-up after presymptomatic testing for Huntington's disease in tested individuals and partners. Health Psychology 16: 20-35.
37. Tyler A, Ball D and Craufurd D (1992) Presymptomatic testing for Huntington's disease in the United Kingdom. Journal of Medical Genetics 304: 1593-1596.
38. Van Duijn E, Kingma EM and Van Der Mast RC (2007) Psychopathology in verified Huntington's disease carriers. Journal of Neuropsychiatry and Clinical Neurosciences 19: 441-448.
39. Walker FO (2007) Huntington's disease. Lancet 369: 218-228.
40. Watson D, Clark LA and Tellegen A (1988) Development and validation of brief measures of positive and negative affect: The PANAS scales. Journal of Personality and Social Psychology 54: 1063-1070.