Prediction of psychological functioning one year after the predictive test for Huntington's disease and impact of the test result on reproductive decision making.

Decruyenaere, Marleen; Evers‐Kiebooms, Gerry; Boogaerts, Andrea; Cassiman, J.J.; Cloostermans, T; Demyttenaere, Koen; Dom, René; Fryns, J. P.; Berghe, Herman Van den

doi:10.1136/jmg.33.9.737

Cited by 102 publications

(98 citation statements)

References 21 publications

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“…8 A new finding is that test motivation also has a strong predictive value with respect to long-term distress, independently of ego-strength and test result.…”

Section: Discussionmentioning

confidence: 99%

“…29 In our group of tested persons, the ratio female/male in non-carriers proved to be larger than in carriers. 8 Finally, for a discussion of post-test reproductive decisions, we refer to the results of the European collaborative study 30 on reproductive decisions after predictive testing.…”

Section: Discussionmentioning

confidence: 99%

“…7 This has been confirmed in a 1-year follow up study of predictive testing for HD. 8 Several authors 6,9,10 observed that some test applicants have unrealistic expectations regarding the test result. They use the risk of HD as an excuse for not facing the numerous uncertainties in life and expect that the test result in itself will solve their problems and uncertainties.…”

Section: Introductionmentioning

confidence: 99%

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Psychological distress in the 5-year period after predictive testing for Huntington's disease

et al. 2003

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The paper reports on a 5-year longitudinal study on psychological distress after predictive testing for Huntington's disease (HD) and on correlates of post-test distress. Psychometric tests and questionnaires were used. The tested persons were invited to participate in the follow-up study; the uptake rate was 75% (24 carriers, 33 non-carriers). Three time points were included: baseline, 1 year and 5 years posttest. Five years after the test, mean distress scores of both carriers and non-carriers were within the normal range. Carriers did not differ from non-carriers with regard to mean general distress. Compared to non-carriers, however, carriers had significantly less positive feelings (P50.001) and were more consciously avoiding HD-related situations and thoughts (P50.01). These findings reflect the carriers' conscious and unconscious attempt to escape from pessimism and to minimise negative consequences of the test result. Psychological distress 5 years post-test was significantly associated with ego-strength (P50.05 to P50.001). Except for intrusion and avoidance, distress was also associated with test motivation (P50.05 to P50.01). Compared with baseline level, mean depression, general and specific anxiety had significantly decreased 1 year and 5 years post-test (P50.05 to 0.01). This evolution was independent of the test result. However, based on test motivation, a subgroup of tested persons having long lasting psychological distress could be identified, also irrespective of test result. Persons who asked the test to get rid of the uncertainty, without being able to specify implications for substantial life areas, had more psychological distress before and after the test than those who wanted the test for specific reasons (P50.001 to P50.0001). Moreover, the pattern of post-test anxiety differed over time, depending on the test motivation (P50.05). The findings suggest that pre-and post-test counselling should pay special attention to persons with lower ego-strength and with an unspecified test motivation, because they are at higher risk for long-term psychological distress, independently of the test result.

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“…8 A new finding is that test motivation also has a strong predictive value with respect to long-term distress, independently of ego-strength and test result.…”

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Psychological distress in the 5-year period after predictive testing for Huntington's disease

et al. 2003

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“…A minority was undecided or had no children for other reasons, such as an unstable relationship. A previous study 23 reported that 1 year after predictive testing one-third of the carriers was still undecided. These findings indicate that some couples need a long time of reflection on reproduction.…”

Section: Discussionmentioning

confidence: 99%

The complexity of reproductive decision-making in asymptomatic carriers of the Huntington mutation

et al. 2007

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The aim of this study was to describe reproductive decisions in mutation carriers after predictive testing for Huntington's disease (HD) and to identify factors that play a role in decision-making. In -2004 individuals received a predictive test result; 89 of them were carriers and seven received an equivocal result. Quantitative data on reproductive behaviour have been collected during all follow-up contacts. The follow-up time in this study was 1-16 years (mean: 7.1 years). Qualitative data on reproductive decisionmaking have been collected by the means of semistructured interviews during the 5-year follow-up study. For 46 carriers and two persons with an equivocal result, family planning was one of the motives for predictive testing. In this group, slightly more than half of the carriers (58%) had chosen to have children with prenatal diagnosis or preimplantation genetic diagnosis and about one in three (35%) decided to have no children anymore after the test. A minority (7%) was undecided or had no children for other reasons. Factors playing a role in the decision-making process were the carrier's sex, ethical issues about PD and PGD, the strength of the desire to have children, illness representations including personal experiences with HD in the family and the technological imperative. Some of these elements were in conflict and induced ambivalence towards reproductive choices. The results illustrate the complexity of the decision-making process and the necessity of in-depth counselling. Counselling should pay special attention to conflicting values and beliefs and to all kinds of pressure.

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“…[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.…”

Section: Papers Selected For Reviewmentioning

confidence: 99%

Psychological consequences of predictive genetic testing: a systematic review

2000

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The aim of this systematic literature review is to describe the psychological consequences of predictive genetic testing. Five databases were searched for studies using standardised outcome measures and statistical comparison of groups. Studies were selected and coded by two independent researchers. From 899 abstracts, 15 papers, describing 11 data sets, met the selection criteria for the review. The studies were of predictive genetic testing for Huntington's disease, hereditary breast and ovarian cancer, familial adenomatous polyposis and spinocerebellar ataxia. One involved children; the rest were of adults. None of the 15 papers reported increased distress (general and situational distress, anxiety and depression) in carriers or non-carriers at any point during the 12 months after testing. Both carriers and non-carriers showed decreased distress after testing; this was greater and more rapid amongst non-carriers. Test result (ie being a carrier or non-carrier) was rarely predictive of distress more than one month after testing (predictive in two of 14 analyses). Pre-test emotional state was predictive of subsequent distress in 14 of 27 analyses. There is a lack of informative studies in this field. The studies reviewed suggest that those undergoing predictive genetic testing do not experience adverse psychological consequences. However, the studies are of self-selected populations who have agreed to participate in psychological studies and have been followed up for no more than three years. Most research has been of testing for Huntington's Disease and included follow-up of no more than one year. The results suggest that testing protocols should include a pre-test assessment of emotional state so that post-test counselling can be targeted at those more distressed before testing. None of the studies experimentally manipulated the amount or type of counselling provided. The relationship between counselling and emotional outcome is therefore unclear and awaits empirical study.

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Prediction of psychological functioning one year after the predictive test for Huntington's disease and impact of the test result on reproductive decision making.

Cited by 102 publications

References 21 publications

Psychological distress in the 5-year period after predictive testing for Huntington's disease

Psychological distress in the 5-year period after predictive testing for Huntington's disease

The complexity of reproductive decision-making in asymptomatic carriers of the Huntington mutation

Psychological consequences of predictive genetic testing: a systematic review

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