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Psychological sequelae of predictive testing in Huntington's disease in Western Australia and New South Wales

Connor, Carmela F. (1999) Psychological sequelae of predictive testing in Huntington's disease in Western Australia and New South Wales. Professional Doctorate thesis, Murdoch University.

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Abstract

While there has been extensive investigation of the psychological consequences of Predictive Testing (PT) in Huntington’s Disease (HD) in overseas populations, there is a need to improve our understanding of how receiving a PT result affects the Australian client and their family. The current investigation comprised three studies.

Study 1 involved retrospectively following up all applicants, and their partners, enrolled in the West Australian (WA) and New South Wales (NSW) HD PT Programmes (n = 79). The long-term psychosocial sequelae of applicants were explored in an effort to determine whether there were any differences between carriers and non-carriers. Secondly, factors that were significantly associated with psychological distress following a PT result were identified. Support was found for the hypothesis that at least 10% of carriers and non-carriers would obtain clinically significant scores on measures of psychological distress (Spielberger Anxiety Scale [STAI], Impact of Event Scale [IES], & General Health Questionnaire [GHQ]). Carriers were more likely than non-carriers to experience clinically abnormal scores, especially with regard to STAI (State) and the dimensions of intrusion and avoidance on the IES.

Study 2 involved assessing the frequency and nature of adverse reactions that developed in applicants who had undergone PT in WA by analysing clinic case notes (n = 119). An Adverse Event (AE) was considered to have occurred if the applicant experienced any of the following: depression, anxiety, suicidal ideation or attempt, guilt, psychiatric hospitalisation, breakdown in relationships, and substance abuse. Support was found for the hypothesis that the rate of AE’s found in WA would be higher than 10% for both carriers and non-carriers, as approximately 21 % of the sample experienced an AE. In particular, it was found that carriers were significantly more likely than non-carriers to experience an increase in substance abuse, relationship breakdown, clinical depression, suicidal ideation, and anxiety. Conversely, noncarriers were more likely to report feelings of guilt at 'surviving' the HD gene.

Study 3 was an exploratory study, investigating the nature and pattern of psychosocial sequelae that developed in PT applicants in WA over a 12 to 18 month period, by administering measures of psychological distress at baseline and various intervals post-result. As a full data set was obtained for only 6 individuals it was not possible to address the initial hypotheses. Nevertheless, the case study approach did provide some insight into how PT applicants in WA adjusted to coping with their result status. Overall, the findings were consistent with the first two studies in that at least 10% of carriers and non-carriers obtained clinically significant scores on measures of psychological distress (Beck Depression Inventory [BDI], STAI, IBS, GHQ, Social Support Questionnaire), with carriers more likely than non-carriers to experience clinically abnormal scores.

In conclusion, the results of the three studies indicate that PT for HD in WA and NSW results in considerable psychosocial consequences for the participants. This contrasts with overseas research and the growing perception that PT in HD is a relatively harmless procedure with few adverse consequences (Bundey, 1997). The implications of these findings are presented, as well as an outline of the methodological limitations of this investigation and suggestions for future research.

Item Type: Thesis (Professional Doctorate)
Murdoch Affiliation: Division of Social Sciences, Humanities and Education
School of Psychology
Notes: Note to the author: If you would like to make your thesis openly available on Murdoch University Library's Research Repository, please contact: repository@murdoch.edu.au. Thank you.
Supervisor(s): Hayward, Linda
URI: http://researchrepository.murdoch.edu.au/id/eprint/52306
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