Literature DB >> 15032971

Predictive testing for Huntington's disease: relationship with partners after testing.

M Decruyenaere1, G Evers-Kiebooms, T Cloostermans, A Boogaerts, K Demyttenaere, R Dom, J P Fryns.   

Abstract

This study focuses on the partner relationship of tested persons, 5 years after their predictive test result for Huntington's disease (HD). We describe changes in marital status, quality of the relationship, and perceived changes in the relationship. Twenty-six carriers, 14 of their partners, 33 non-carriers, and 17 of their partners participated in the study. Qualitative and quantitative methods were used. For the majority of tested persons (about 70%), the marital status was unchanged 5 years post test. Overall, carriers rated the quality of the relationship higher than their partners did and they perceived more positive changes. Qualitative data show that a test result leading to changed roles may induce significant marital distress. Another consequence of the test may be the changes in dynamics in asymptomatic carrier couples. A pre-test discussion of the possible impact of the test result on the relationship should result in a better preparation for and more understanding of the reactions after testing. Counselling after testing should stimulate an open communication between partners with consideration of needs and anxieties of both partners.

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Mesh:

Year:  2004        PMID: 15032971     DOI: 10.1111/j..2004.00168.x

Source DB:  PubMed          Journal:  Clin Genet        ISSN: 0009-9163            Impact factor:   4.438


  9 in total

1.  Personal factors associated with reported benefits of Huntington disease family history or genetic testing.

Authors:  Janet K Williams; Cheryl Erwin; Andrew Juhl; James Mills; Bradley Brossman; Jane S Paulsen
Journal:  Genet Test Mol Biomarkers       Date:  2010-08-19

2.  Impact of Huntington Disease Gene-Positive Status on Pre-Symptomatic Young Adults and Recommendations for Genetic Counselors.

Authors:  Ping Gong; Joanna H Fanos; Lauren Korty; Carly E Siskind; Andrea K Hanson-Kahn
Journal:  J Genet Couns       Date:  2016-04-22       Impact factor: 2.537

3.  Predictive testing and clinical trials in Huntington's disease: An ethical analysis.

Authors:  Cristina Sampaio; Jamie Levey; Robert Klitzman
Journal:  Mov Disord       Date:  2017-12-04       Impact factor: 10.338

Review 4.  Together from the start: A transdiagnostic framework for early dyadic interventions for neurodegenerative diseases.

Authors:  Sarah M Bannon; Victoria A Grunberg; Heena R Manglani; Ethan G Lester; Christine Ritchie; Ana-Maria Vranceanu
Journal:  J Am Geriatr Soc       Date:  2022-04-18       Impact factor: 7.538

5.  Alpha-1 couples: interpersonal and intrapersonal predictors of spousal communication and stress.

Authors:  Rachel A Smith; Sara Wienke; Donna L Coffman
Journal:  J Genet Couns       Date:  2013-08-11       Impact factor: 2.537

Review 6.  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

7.  How do partners find out about the risk of Huntington's disease in couple relationships?

Authors:  Karen Forrest Keenan; Sheila A Simpson; Zosia Miedzybrodzka; David A Alexander; June Semper
Journal:  J Genet Couns       Date:  2013-01-09       Impact factor: 2.537

8.  Mid- and long-term anxiety levels associated with presymptomatic testing of Huntington's disease, Machado-Joseph disease, and familial amyloid polyneuropathy.

Authors:  Susana Lêdo; Ângela Leite; Teresa Souto; Maria A Dinis; Jorge Sequeiros
Journal:  Braz J Psychiatry       Date:  2016-02-05       Impact factor: 2.697

Review 9.  Predictive Genetic Counseling for Neurodegenerative Diseases: Past, Present, and Future.

Authors:  Jill S Goldman
Journal:  Cold Spring Harb Perspect Med       Date:  2020-07-01       Impact factor: 5.159

  9 in total

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