Impact on couple relationships of predictive testing for Huntington disease: A longitudinal study

Abstract

Since predictive testing has been available for Huntington disease (HD) and similar adult-onset neurodegenerative disorders, research into the psychosocial impact of test results has focussed on those receiving results, and to a lesser extent, on their partners. Few studies have examined the impact of predictive testing on the couple relationship, particularly from the perspective of family systems theory. This longitudinal study compared the level of marital adjustment of 23 couples in which the at-risk partner is undergoing predictive testing for HD (the testing group) with that of 20 couples in which the at-risk partner is not undergoing testing (the non-testing group). Participating couples completed a relationship measure, the Dyadic Adjustment Scale, at baseline and on two subsequent occasions. Using non-parametric tests, comparisons were made at each phase between the couple scores of the testing and non-testing groups but no significant differences were found in the levels of marital adjustment. Within the testing group the same comparisons were made for the carrier and non-carrier subgroups, and a significant difference was found at the final phase. There was an increase in the level of marital adjustment for the carrier group and a decrease for the non-carrier group. Together with trends observed in the data, this finding suggests a need for greater attention to be given to the potential impact of predictive testing on the couple relationship. Offering couples pre-result relationship assessment and referral for couple therapy, if warranted, may enhance the quality of professional support during the predictive testing process.

Alpha‐1 Couples: Interpersonal and Intrapersonal Predictors of Spousal Communication and Stress

“…The intrapersonal and interpersonal influences on communication and stress differed between registered members and their spouses. These findings support the frequent claim that genetic tests influence carriers and their families in complex ways (Keenan et al, 2013; Metcalfe et al, 2002; Richards & Williams, 2004; Wiseman, Dancyger, & Michie, 2010), and insights into the form of those complexities.…”

“…Stigmas are socialized stereotypes (Smith, 2007a, 2011), which suggests that everyone in a community, including both spouses in a couple, hold similar beliefs. While there is little research on AATD, studies of other genetic conditions show that psychological distress and negative feelings, such as guilt, frustration, sadness, and anger, are experienced by those receiving the genetic test results (Dohany, Gustafson, Ducaine, & Zakalik, 2012; Lippi, Favaloro, & Plebiani, 2011) and their spouses (Decruyenaere et al, 2004; Keenan, Simpson, Miedzybrodska, Alexander, & Semper, 2013; Metcalfe, Liede, Trinkaus, Hanna & Narod, 2002; Mireskandari et al, 2006; Richards & Williams, 2004). Indeed, communication privacy management (Petronio, 2002) argues that once a person discloses their health news to a confidant, the confidant may feel co-ownership of that information and its implications.…”

“…Anticipating stigmatization and experiencing negative feelings are both stressful (Cohen et al, 1998; Goffman, 1963; Smith, 2011). Indeed, some couples experience stress when one of them has a genetic test, even if the results are negative (Richards & Williams, 2004). When experiencing such stressors, couples are likely to talk with each other.…”

Prenatal testing in Huntington disease: after the test, choices recommence

“…An effect of presymptomatic testing for HD on family structure was previously reported. 20 However, the couples in our cohort do not reflect the general at-risk population, as they had planned to have a child with their partner, and we could speculate that they engage in a long-term relationship despite the threat of the disease.…”

Genetic counseling for FTD/ALS caused by the C9ORF72 hexanucleotide expansion

“…There is also evidence that baseline distress is a better predictor of post-test counseling distress than the genetic test result itself [60]. Predictive genetic testing may have a profound impact not only on the at-risk individual but also on spouses and partners [61,62]. This may greatly influence patterns of disclosure and nondisclosure within families [63].…”