Exploration of the effects of predictive testing for Huntington disease on intimate relationships

Abstract

The focus in predictive testing for Huntington disease is beginning to shift from individuals at risk to an examination of the effects on other relatives, particularly on spouses and partners. We examine the effects of participating in a predictive testing program for 25 couples. When assessed prior to testing, spouses were significantly more depressed than their at-risk partners. After pretest counseling, 6 (24%) of the couples chose not to pursue testing. At baseline, these 6 couples had significantly higher levels of psychological distress and marital dysfunction than couples who did choose to complete testing. Of the 19 couples completing testing, 5 received an increased risk result and 14 received a decreased risk result. Prior to testing, the partners of individuals who later received an increased risk result exhibited higher levels of marital distress. At 3- and 6-month follow-ups, high-risk couples were significantly more distressed than low-risk couples. These levels of distress improved somewhat at 9 months after testing, but began to climb again at 12 months. Individuals at increased risk were significantly more distressed at all points during follow-up as compared to individuals at low risk. No significant differences were found between the partners of high- and low-risk individuals at 3, 6, 9, and 12 months after disclosure.(ABSTRACT TRUNCATED AT 250 WORDS)

Psychological consequences of predictive genetic testing: a systematic review

“…[2][3][4][5][6][7][8][9][10][11][12][13][14][15][16] Reasons for excluding the remaining papers were as follows: 10 were reviews, 17-26 10 were qualitative, [27][28][29][30][31][32][33][34][35][36] seven reported only pre-test measures, [37][38][39][40][41][42][43] two were of respective attitudes towards testing or used unstandardised measures, 44,45 and one did not report outcomes for unaffected participants separately from those affected. 46 One small sample, crosssectional study 47 was also excluded as it was preliminary to larger, prospective studies conducted by the same group.…”

“…Variables predicting consequences more than one month after testing were investigated using multiple regressions, 3,7,10,11 logistic regressions, 10 random effects modelling, 2 non-parametric tests, 6 and parametric analyses of variance. 15 The two variables most often used to predict emotional consequences were test result and pre-test emotional state.…”

Genetic counseling and testing for Huntington's disease: A historical review

“…The published literature has focused on psychosocial outcomes (Table I); patient and family attitudes (Table II); Lynch et al [1972] Case study of a single family Stern and Eldridge [1975] Survey of Committee for the Combat of HD members Glendinning and Glendinning [1976] Concern about possible deleterious effects of publicity about HD on families Caro et al [1976] Impact of a television story on patient-initiated contacts Barette and Marsden [1979] Knowledge and attitudes survey Harper et al [1981] Modeling the potential impact of genetic counseling on the incidence of HD Teltscher and Polgar [1981] Knowledge and attitudes survey Tyler and Harper [1983] 12% had counseling before completing families; 56% of subjects would take a predictive test Carter et al [1983] Focused on reproductive outcomes after genetic counseling McCormack et al [1983] Attitudes towards donor artificial insemination Wolff [1988] Case report of psychotherapy after predictive testing Lam et al [1988] Case report of a single symptomatic individual with adverse psychiatric outcome after "predictive" testing Kessler [1988] Describes family "preselection" of affected members Wiggins et al [1992] Psychological impact of predictive testing Bloch et al [1993] Discusses stages of psychological readiness for HD diagnosis Zak et al [1994] Predictive testing experience in Florida, 1987Florida, -1993 After the discovery of the HD gene in 1993 Decruyenaere et al [1995] Risk perception and psychological profile of patients undergoing predictive testing Hayden et al [1995] Psychological effects of predictive testing Blomhoff et al [1995] Psychological effects of predictive testing Wilke [1995] Case discussion Quaid and Wesson [1995], Decruyenaere et al [2004Decruyenaere et al [ , 2005 Effects of predictive testing on intimate and partner relationships Taylor and Myers [1997] Long-term followup of patents who had undergone predictive testing by linkage analysis van 't Spijker and ten Kroode [1997] Psychological aspects of genetic counseling in HD DudokdeWit et ...…”

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

“…Table 2 is a summary of methodologic aspects and major findings of prospective studies designed to use standardized measures of psychological outcome and to evaluate the psychological effects of genetic testing for Huntington's disease. [23][24][25][26]29,30 Studies based on linkage and mutation analyses are indicated, as are results of significance tests between carriers and noncarriers 7 to 10 days and 12 months after disclosure. For ease of comprehension, people who underwent linkage analysis and received increased risk results are referred to as "carriers" and those with decreased risk results are labeled "noncarriers."…”