Couple Relationships and HD Testing

What does the medical literature say about the pros and cons of predictive testing for couple relationships, especially psychosocial aspects?

Similar to the work of Richards and Williams reviewed above, a study by Decruyenaere in 2004 also used the Dyadic Adjustment Scale to measure changes in the couple relationship for 5 years following predictive testing. But the study also collected qualitative data from separate interviews with the at-risk persons and their partners. Qualitative data are useful because they can provide more thorough explanations for trends observed in couple relationship over time. The specific couple relationship examined in the Decruyenaere study was marriage.

In this study, all at-risk persons were undergoing predictive testing, with 26 carriers and 14 of their partners, and 33 of non-carriers and 17 of their partners participating in the study. The main finding was that the majority (70%) of the tested persons did not have a change in marital status over the 5 years of the study. As for the quality of the marital relationship, half of the couples reported no change in that interval compared to the quality before the predictive testing. Out of those that did report change, non-carrier couples cited less distress and more communication. Carrier couples that experienced increased relationship quality over the five years cited more mutual support.

A conclusion that can be drawn from this study is that the test result does not by itself predict outcomes in the couple relationship; even couples with negative test results for HD may experience post-test psychosocial distress and couple relationship breakdown. The important factor for couples undergoing predictive testing is whether the test result causes role shifts that upset the balance of the pre-test couple relationship. For example, two couples that received positive test results reported frustration as the partners shifted toward caretaking roles even before the people with HD showed any symptoms. In another couple tested, a woman believed to be at risk for HD gained self-esteem from a negative result. With low self-esteem before the test, she had married someone who did not match her ideals in a spouse. After the testing showed she did not have HD, she regretted her decision to marry her husband, clearly leading to relationship deterioration.

Since undesired shifts in roles may contribute to couple relationship breakdown whether the test result is positive or negative, the researchers of this study strongly support post-test counseling. Post-test counseling can help couples find and maintain a new balance that is satisfying to both partners. This counseling should include open communication between the partners, with special attention paid to the desires and worries of each partner.

Last Modified: 07/07/2007

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