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Predictive testing for Huntington's disease: relationship with partners after testing
Author(s) -
Decruyenaere M,
EversKiebooms G,
Cloostermans T,
Boogaerts A,
Demyttenaere K,
Dom R,
Fryns JP
Publication year - 2004
Publication title -
clinical genetics
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.543
H-Index - 102
eISSN - 1399-0004
pISSN - 0009-9163
DOI - 10.1111/j..2004.00168.x
Subject(s) - test (biology) , disease , distress , psychology , marital status , asymptomatic carrier , clinical psychology , predictive testing , asymptomatic , medicine , developmental psychology , biology , population , environmental health , paleontology
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.