Attitudes of patients and their relatives to Huntington's disease.

Potential impact of a predictive test on the gene frequency of Huntington disease

“…Almost three-quarters of this sample said they would want to take a predictive test, findings consistent with similar surveys throughout the world [Stern andEldridge, 1975: Barette andMarsden, 1979;Teltscher and Polgar, 1981;Wexler, 1979;Tyler and Harper, 19831. Although for some people actual responses may differ when the hypothetical situation becomes reality, most individuals in this study were emphatic in their desire to take a test and little ambivalence was expressed.…”

“…In this study 46% of all age-eligible, at-risk individuals seen in the center program were interviewed, which is comparable to other studies [Stern and Eldridge, 1975;Barette and Marsden, 1979;Teltscher and Polgar, 19811. This survey relies on voluntary participation and is therefore not a random sample.…”

Attitudes toward presymptomatic testing in Huntington disease

“…A number of past studies of attitudes toward presymptomatic testing in HD have determined that from 56 to 84% of at-risk persons surveyed would choose to take a predictive test if one were to be developed [Stern and Eldridge, 1975;Barette and Marsden, 1979;Teltscher and Polgar, 1981;Tyler and Harper, 1983;Schoenfeld et al, 19841. Similar attitudinal responses have been obtained more recently, since the identification of the linked RFLP [Koller and Davenport, 1984;Mastromauro et al, 19861.…”

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 ...…”

“…In 1972, Stern and Eldridge [1975] obtained 1,065 responses (a response rate a little over 40%) to a survey of the CCHD membership about their experiences with HD. Stern and Eldridge found that the physical effects of the disease were its most disturbing aspect for 44% of respondents whereas mental, social, genetic, and other effects were the most disturbing for 29%, 6%, 8%, and 13% of respondents, respectively.…”