Literature DB >> 8291567

Presymptomatic DNA testing for Huntington disease: identifying the need for psychological intervention.

A Tibben1, H J Duivenvoorden, M Vegter-van der Vlis, M F Niermeijer, P G Frets, J J van de Kamp, R A Roos, H G Rooijmans, F Verhage.   

Abstract

UNLABELLED: In the Dutch presymptomatic DNA-testing program for Huntington disease (HD), 29 individuals with increased risk and 44 with decreased risk were followed-up 6 months after test results. A prognostic model was built aimed at identifying individuals at risk for psychological maladjustment, as measured by the Impact of Event Scale, the Beck Hopelessness Scale, the General Health Questionnaire, and the Social Support Questionnaire.
RESULTS: 1) The more that applicants suffered from intrusive feelings about HD and tried to avoid HD-related situations, prior to the test, the greater the chance that they will experience this 6 months after the test if they proved to be at increased risk; 2) the more that both individuals with increased risk and those with decreased risk who suffered from the threat of having HD tried to avoid HD-related situations prior to the test and the less satisfied they were with available support, the greater the probability that they will show avoidance behavior after the test; 3) the more pessimistic that individuals with increased risk as well as those with decreased risk were about their future prior to the test, the more they avoided HD-related situations and the more dissatisfied they were about their available support (pretest), the greater the probability that they will become depressive and suicidal. Psychological adjustment was also studied as a function of a) intrusion/denial-avoidance pattern over time and b) healthy mental functioning/future expectancies. Most individuals with increased risk (86%) seem to cope well thus far, although this was based largely on strong psychological defenses and dependent on satisfactory relationships.(ABSTRACT TRUNCATED AT 250 WORDS)

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Year:  1993        PMID: 8291567     DOI: 10.1002/ajmg.1320480305

Source DB:  PubMed          Journal:  Am J Med Genet        ISSN: 0148-7299


  15 in total

Review 1.  Psychological impact of genetic testing for Huntington's disease: an update of the literature.

Authors:  B Meiser; S Dunn
Journal:  J Neurol Neurosurg Psychiatry       Date:  2000-11       Impact factor: 10.154

Review 2.  Psychological effect of genetic testing for Huntington's disease: an update of the literature.

Authors:  B Meiser; S Dunn
Journal:  West J Med       Date:  2001-05

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

Authors:  M Decruyenaere; G Evers-Kiebooms; A Boogaerts; J J Cassiman; T Cloostermans; K Demyttenaere; R Dom; J P Fryns
Journal:  J Med Genet       Date:  1999-12       Impact factor: 6.318

4.  Predicting adaptation to presymptomatic DNA testing for late onset disorders: who will experience distress? Rotterdam Leiden Genetics Workgroup.

Authors:  A C DudokdeWit; A Tibben; H J Duivenvoorden; M F Niermeijer; J Passchier
Journal:  J Med Genet       Date:  1998-09       Impact factor: 6.318

5.  Psychological Model for Presymptomatic Test Interviews: Lessons Learned from Huntington Disease.

Authors:  J Soldan; E Street; J Gray; J Binedell; P S Harper
Journal:  J Genet Couns       Date:  2000-02       Impact factor: 2.537

6.  Who Is at Risk for Psychological Distress in Genetic Testing Programs for Hereditary Cancer Disorders?

Authors:  F J Grosfeld; C J Lips; F A Beemer; H F Ten Kroode
Journal:  J Genet Couns       Date:  2000-06       Impact factor: 2.537

7.  Analysis of the Reasons for Non-Uptake of Predictive Testing for Huntington's Disease in Spain: A Qualitative Study.

Authors:  Jesús Rivera-Navarro; Esther Cubo; Natividad Mariscal
Journal:  J Genet Couns       Date:  2015-04-30       Impact factor: 2.537

8.  Psychological distress in applicants for predictive DNA testing for autosomal dominant, heritable, late onset disorders. The Rotterdam/Leiden Genetics Workgroup.

Authors:  A C DudokdeWit; A Tibben; H J Duivenvoorden; P G Frets; M W Zoeteweij; M Losekoot; A van Haeringen; M F Niermeijer; J Passchier
Journal:  J Med Genet       Date:  1997-05       Impact factor: 6.318

9.  Psychological Impact of Predictive Genetic Testing in VCP Inclusion Body Myopathy, Paget Disease of Bone and Frontotemporal Dementia.

Authors:  Abhilasha Surampalli; Manaswitha Khare; Georgette Kubrussi; Marie Wencel; Jasmin Tanaja; Sandra Donkervoort; Kathryn Osann; Mariella Simon; Douglas Wallace; Charles Smith; Aideen M McInerney-Leo; Virginia Kimonis
Journal:  J Genet Couns       Date:  2015-02-26       Impact factor: 2.537

Review 10.  A review of quality of life after predictive testing for and earlier identification of neurodegenerative diseases.

Authors:  Jane S Paulsen; Martha Nance; Ji-In Kim; Noelle E Carlozzi; Peter K Panegyres; Cheryl Erwin; Anita Goh; Elizabeth McCusker; Janet K Williams
Journal:  Prog Neurobiol       Date:  2013-09-11       Impact factor: 11.685

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