Original Article
The Psychological Consequences of Predictive Testing for Huntingtons Disease
N Engl J Med 1992; 327:1401-1405November 12, 1992
- Abstract
- Abstract
Background.
Advances in molecular genetics have led to the development of tests that can predict the risk of inheriting the genes for several adult-onset diseases. However, the psychological consequences of such testing are not well understood.
Methods.
The 135 participants in the Canadian program of genetic testing to predict the risk of Huntington's disease were followed prospectively in three groups according to their test results: the increased-risk group (37 participants), the decreased-risk group (58 participants), and the group with no change in risk (the no-change group) (40 participants). All the participants received counseling before and after testing. Standard measures of psychological distress (the General Severity Index of the Symptom Check List 90-R), depression (the Beck Depression Inventory), and well-being (the General Well-Being Scale) were administered before genetic testing and again at intervals of 7 to 10 days, 6 months, and 12 months after the participants received their test results.
Results.
At each follow-up assessment, the decreased-risk group had lower scores for distress than before testing (P<0.001). The increased-risk group showed no significant change from base line on any follow-up measure, but over the year of study there were small linear declines (P<0.023) for distress and depression. The no-change group had scores lower than at base line on the index of general well-being at each follow-up (P≤0.045). At the 12-month follow-up, both the increased-risk group and the decreased-risk group had lower scores for depression and higher scores for well-being than the no-change group (P≤0.049).
Conclusions.
Predictive testing for Huntington's disease has potential benefits for the psychological health of persons who receive results that indicate either an increase or a decrease in the risk of inheriting the gene for the disease. (N Engl J Med 1992;327:1401–5.)
Media in This Article
Figure 1
Mean Scores on the General Severity Index for the Three Study Groups at Each Assessment.Table 1
Membership in the Study Cohort.Article Activity
- Article
IT is now possible to predict the probability of inheriting the gene for diseases such as Huntington's disease,1 , 2 familial Alzheimer's disease,3 and some types of familial cancer.4 For these diseases, which are manifested primarily in adult life, DNA analysis can provide information about the likelihood that the disease will appear at some time in the future, but it currently provides no information about the patient's age at the onset of disease or the severity of the illness. Predictive testing is therefore unique and distinct from clinical diagnosis. To date, no large prospective studies have been reported that evaluate the effects on individuals and families of predictive testing for adult-onset disorders. Consequently, it is not yet known whether such testing will be beneficial or harmful to the subjects.
Programs of predictive testing for Huntington's disease have been offered for several years in various parts of the world.5 6 7 Before their introduction, research protocols were developed to evaluate the psychological impact of a report of either an increased or a decreased risk of inheriting the gene for the disease. There was concern that a report of an increased risk would precipitate catastrophic reactions, such as emotional breakdown or suicide.8 , 9
Persons who have been informed of an altered risk of disease have been described,10 , 11 and preliminary data5 have been reported that assess the psychological responses of a small sample of subjects with one year of follow-up. However, the small number of people providing the data for these reports limits the general-izability of the conclusions about the effects of predictive testing on psychological health.
The Canadian Collaborative Study of Predictive Testing was established in 1988 with the participation of 14 genetic centers across the country. The major goals of this ongoing study are to describe the base-line attributes of candidates for predictive testing and to compare the short-term and long-term psychological effects of such testing on persons who are told that their risk of disease is either increased or decreased. In this report, we present data obtained at base line and after 12 months of follow-up in a large cohort of adults followed in a program of predictive testing for Huntington's disease.
Methods
The methods of recruitment and criteria for eligibility in the Canadian Collaborative Study are described in detail elsewhere.12 In brief, any person 18 years of age or older who had a confirmed family history of Huntington's disease and who voluntarily requested predictive testing was eligible. In the present study, however, we included only those who entered the collaborative study with a 50 percent chance of having inherited the gene for Huntington's disease (i.e., people who had an affected parent) and who, before January 1, 1990, had been given the results of their predictive tests, or had declined to take the test but volunteered to participate in the program for purposes of comparison, or had been advised that their test was uninformative. A test was considered uninformative if there were not enough family members available or willing to provide the needed blood samples, or if the DNA markers were uninformative, or if recombination was detected between the DNA markers and the gene for Huntington's disease.
A total of 208 participants in the collaborative study met the criteria for inclusion in the present study cohort. As Table 1Table 1
Membership in the Study Cohort. indicates, 135 of these persons (65 percent) were followed in three study groups: the increased-risk group (37 participants), the decreased-risk group (58 participants), and the group with no change in risk (the no-change group) (40 participants). Eighteen persons (9 percent) were excluded from the study during the base-line assessment because they were found to have clinical symptoms of Huntington's disease and were therefore ineligible for the predictive test. The remaining 55 persons (26 percent) withdrew from the study before completing the base-line assessment. Of those who withdrew, 31 (56 percent) left before DNA testing was started, and 24 (44 percent) withdrew immediately after being advised that the DNA test would be uninformative. An analysis comparing the participants who withdrew with those who remained in the study failed to detect significant differences in selected base-line demographic and psychological characteristics (P>0.05 for all comparisons; Tables 2Table 2
Base-Line Demographic Characteristics. and 3Table 3
Summary of Comparisons between Study Groups.* show the variables analyzed).The increased-risk and decreased-risk groups consisted of people who took the predictive test and were informed that their chance of inheriting Huntington's disease was either 75 percent or more (an increase in risk from 50 percent) or 25 percent or less (a decrease in risk). Thirty of the 37 people in the increased-risk group and 53 of the 58 people in the decreased-risk group were given risk estimates of 90 percent or more or 10 percent or less, respectively. The no-change group included those who did not want to take the test (23 people) and those for whom the test was uninformative but who chose not to withdraw from the study (17 people). The data for these two subgroups were combined after their demographic and psychological characteristics were compared, both at base line and during follow-up, and no significant differences were detected (P>0.05 for all comparisons; Tables 2 and 3 show the variables analyzed).
Study Protocol
A detailed description of the protocol as it was implemented in Vancouver in 1986 has been provided elsewhere.12 The study protocol was approved by the Clinical Screening Committee for Research Involving Human Subjects of the University of British Columbia and by the Human Ethics Committee of each participating regional genetics center. In brief, the protocol had three components: the base-line assessment, the disclosure of results, and follow-up.
The base-line assessment consisted of at least two counseling sessions held over a period of several months. During the initial session, the participants completed a large number of questions covering demographic and psychosocial characteristics, including a variety of frequently used, well-validated instruments designed to assess psychological status. The general level of psychological distress was chosen in advance as the primary psychological outcome measure of the study. It was assessed with the General Severity Index (GSI) from the Symptom Check List 90-R (SCL-90-R),13 which has been standardized to represent a general adult population and has a mean (±SD) score of 50±10. Other psychological states assessed in the study were depression, as measured by the Beck Depression Inventory,14 and general well-being, as measured by the General Well-Being Scale.15 , 16 The rationale for the selection of these measures has been described in detail elsewhere12 but is based on the premise that a major event, such as predictive testing, creates stress that, if severe, can trigger depression and reduce one's sense of well-being.
After the initial session, the participants who chose to take the predictive test signed a consent form, underwent a detailed quantitative neurologic examination,17 arranged for the collection of blood samples from appropriate relatives, and were advised about whether the test was likely to be informative. Once the laboratory analysis was completed, a final session was held to prepare each candidate to receive the test results. The disclosure of results was scheduled to occur one to two weeks later. If, however, a diagnosis of Huntington's disease could be made on the basis of the neurologic examination, the DNA test was not performed and the person was excluded from the study. People who chose not to have the predictive test, as well as those for whom the test was uninformative, were asked to remain in the study for comparison purposes as members of the no-change group. If they agreed, a signed consent form was obtained.
During the follow-up period, the members of the increased-risk group and the decreased-risk group repeated certain questionnaires from among those completed at base line approximately 7 to 10 days, 6 months, and 12 months after they received the results of the predictive test. In the no-change group, the follow-up assessments were made at six-month intervals after the base-line assessment.
Statistical Analysis
The associations between membership in the three study groups and the categorical variables of sex, education, occupation, and marital status were investigated with chi-square tests.
A one-way analysis of variance or its nonparametric equivalent, the Kruskal—Wallis test, was used to test for base-line differences between the study groups with respect to age and each of the three psychological scales. In the analysis of the follow-up data, scores representing the difference between the follow-up scores and the base-line scores were computed and compared. This was done to reduce the effect of variability among subjects on the psychological measures. If a significant difference among the three groups was detected, pairwise comparisons were carried out to investigate the nature of the effect between each pair of groups.
A repeated-measures analysis of variance was performed to investigate changes in mean response over time for each outcome measure in each study group. If an overall effect was detected, pairwise differences were investigated between the mean scores obtained at each follow-up assessment and the mean score obtained at base line. If no pairwise comparisons were significant, orthogonal polynomial contrasts were used to test for trends.18
Results
Base-Line Assessment
Table 2 shows the demographic characteristics of the study cohort at base line. The mean age of the members of the study was 37 1/2 years. More than two thirds of the sample were married, and there were twice as many female participants as male. A comparison of demographic characteristics according to group membership showed that the decreased-risk group was significantly older than the increased-risk group and the no-change group. No significant differences were observed with regard to any of the other demographic variables included in Table 2.
The finding of a significant difference in age between the three study groups was not surprising, since the probability that an asymptomatic person has inherited the gene for Huntington's disease decreases with age. However, to determine whether the difference in age might be independently associated with psychological affect, Pearson product-moment correlation coefficients were computed between each psychological variable and age. No significant correlations were observed (-0.18<r<+0.20; P>0.05).
A comparison of the participants' scores on the base-line set of psychological measures (Table 3) failed to reveal any significant differences between the study groups in terms of the participants' own assessment of their state of general psychiatric distress, clinical depression, and general well-being.
Follow-up Assessments
Comparisons between Groups
The average changes from base line recorded at each follow-up assessment are summarized in Table 3. At the assessment 7 to 10 days after the release of the test results, the increased-risk and decreased-risk groups differed significantly with regard to all three psychological outcome measures. The decreased-risk group showed an increase in general well-being (on the General Well-Being Scale) and reductions in distress (on the General Severity Index) and depression (on the Beck Depression Inventory), whereas the increased-risk group had decreased scores on the General Well-Being Scale and little change on the other two instruments. The no-change group was not assessed at this time.
At the six-month follow-up, the groups differed significantly only on the well-being scale. Subsequent pairwise comparisons indicated that the increase from base line in the decreased-risk group differed significantly from the reduction in the no-change group. No other pairwise comparisons were significant.
At the 12-month follow-up, the three groups differed significantly on all three psychological measures. Pairwise comparisons revealed significant differences between the no-change group and the decreased-risk group on all three measures and between the no-change group and the increased-risk group on the General Well-Being Scale and the Beck Depression Inventory. In each case, the scores for the tested groups reflected improvement in the psychological states assessed, whereas those of the no-change group reflected deterioration. No significant differences were detected between the increased-risk group and the decreased-risk group.
As Table 3 shows, the number of participants declined over the course of the follow-up period. A total of 25 persons failed to complete the questionnaires at the one-year assessment. Nineteen of these withdrew from the study before the 12-month follow-up, whereas 6 persons missed the one-year follow-up assessment. Of the 19 persons who withdrew, 10 (53 percent) were lost to follow-up and 9 (47 percent) declined to complete the follow-up questionnaires. An examination of those who withdrew according to study group indicated that 10 of the 16 who declined to complete the questionnaires or were lost to follow-up (62 percent) were members of the no-change group; 4 who withdrew (25 percent) were from the increased-risk group, and 2 (12 percent) were from the decreased-risk group. Only three persons withdrew because they were "unable to cope," and these were from each of the three study groups.
Repeated-Measures Analysis
The repeated-measures analysis was restricted to participants for whom at most one data point was missing for each outcome measure. After the imputation of missing scores, the results were in line with the trends shown in Table 3 and those shown in Figure 1Figure 1
Mean Scores on the General Severity Index for the Three Study Groups at Each Assessment. for the scores on the General Severity Index. Only the results on the General Severity Index are shown in Figure 1, because of the similar pattern of the responses on all three measures.An overall difference in scores during the follow-up period was detected in the increased-risk group on both the General Severity Index (P = 0.035) and the Beck Depression Inventory (P<0.001). No significant differences were observed for any of the outcome measures in the primary pairwise comparisons of interest — namely, the mean change from base line at each follow-up (P>0.05 in each case). However, subsequent tests for trend did indicate linear declines on the General Severity Index (P = 0.023) and the Beck Depression Inventory (P = 0.018) over the 12-month period. Seven to 10 days after the disclosure of the test results, the decreased-risk group had a greater sense of well-being (P<0.001) and less depression (P = 0.003) and distress (P<0.001) than at base line. Moreover, at each subsequent follow-up the levels of psychiatric distress remained significantly lower than the base-line levels for this group (P<0.001 for each comparison). No significant effects of this type were detected for the no-change group except on the General Well-Being Scale (P = 0.042). Subsequent pairwise comparisons revealed a significant reduction in general well-being, relative to base line, at both 6 and 12 months of follow-up (P = 0.045 and P = 0.021, respectively).
Discussion
These results suggest that predictive testing for Huntington's disease may maintain or even improve the psychological well-being of many people at risk. As expected, most of those who received a result indicating a decreased risk showed marked improvement in psychological health, as evaluated by our three primary measures of psychological status. As compared with this group, those who received a result indicating an increased risk have not derived the same psychological benefit. However, they have not responded to predictive testing in the negative manner that was feared when programs of predictive testing for Huntington's disease were first developed. Moreover, as compared with those who received a result indicating no change in their degree of risk, both the increased-risk group and the decreased-risk group reported less depression and a greater sense of psychological well-being at the 12-month follow-up assessment. Knowing the result of the predictive test, even if it indicates an increased risk, reduces uncertainty and provides an opportunity for appropriate planning. Therefore, as our findings suggest, people who receive informative results, regardless of the content, may derive psychological benefits not experienced by those who remain uncertain. It should be noted, however, that our no-change group may not be representative of all persons at risk who do not participate in predictive testing. Ours was a self-selected group composed of people who either could not be tested or chose not to be tested but nonetheless agreed to be part of a comparison group.
Although 19 people withdrew from the study during the follow-up period, it is unlikely that their participation would have altered our conclusions. Ten of those who withdrew were members of the no-change group who chose not to continue, for reasons unrelated to the study. The remainder withdrew after varying lengths of follow-up, and examination of their follow-up data did not reveal patterns of response that would have affected the study's findings.
Although the results of this study provide information on average responses to testing, they provide no information on individual responses. As we have reported elsewhere,10 , 11 several persons did have difficulties adjusting to their new status. For those receiving news of an increased risk, there was a new focus on physical symptoms, with frequent requests for physical examination, and a need for continued support and reassurance that results of DNA testing are not synonymous with a diagnosis of the illness. However, despite these difficulties and the concern that the news of a result indicating an increased risk might precipitate a catastrophic reaction, to date there have been no suicide attempts among the people in this group, nor have any of them required psychiatric hospitalization, although some have required additional counseling.10
Although it was expected that some people might have difficulty coping with a result indicating an increased risk, a similar frequency and severity of problems were not expected among those receiving news of a decrease in risk. However, approximately 10 percent of the members of the decreased-risk group have had serious difficulties coping with their new status.11 A major hurdle for them appears to be the realization that they are facing an unplanned future. Some also discover, contrary to their expectations, that a decreased risk of Huntington's disease does not confer any new power to make decisions or solve personal problems.
Despite the difficulties experienced by some members of each group, predictive testing appears to have improved the psychological health and, by implication, the quality of life of many participants in the program. The results of our study should not, however, be interpreted to mean that predictive testing is safe in all circumstances. In general, our study cohort comprised well-educated, middle-aged persons who may not be representative of the entire cohort in the Canadian Collaborative Study of Predictive Testing or of other persons who undergo predictive testing. Moreover, the effects we have observed may have been influenced by the counseling and psychological support that the participants received. Whether similar results would be obtained with a different or a less intensive protocol is unknown.
Predictive testing for Huntington's disease should have important lessons for other severe disorders of late onset. Therefore, there is a need for continued longitudinal assessment of groups involved in predictive testing, to examine not only the psychological but also the social effects of such testing and to collect data that may best predict responses to changes in risk status. In addition, there must be continued efforts to identify and document the spectrum of individual responses to testing. Clearly, programs of predictive testing for Huntington's disease have potential for harm. As the present study suggests, however, such programs also have the potential to enhance the quality of life for many people at risk for this disease.
Supported by the National Health Research and Development Program of Canada, the Kahanoff Foundation, the Huntington Society of Canada, the MSI Foundation of Alberta, and the Medical Research Council of Canada.
*The other study participants were E. Ives, Memorial University, St. John's, Newf.; J.P. Welch and A. Fuller, Dalhousie University, Halifax, N.S.; S. Miller, S. Dufrasne, and E. Andermann, McGill University, Montreal; M. Roy, Université de Montreal, Montreal; P. McLeod, Queen's University, Kingston, Ont.; A. Hunter, Children's Hospital of Eastern Ontario, Ottawa, Ont.; W. Meschino and A. Summers, North York General Hospital, North York, Ont.; D. Whelan and D. Eisenberg, McMaster University Medical Centre, Hamilton, Ont.; H. Soltan and J. Kane, Children's Hospital of Western Ontario, London, Ont.; C.R. Greenberg, J. Knight, and L.P. Thomson, Children's Hospital, Winnipeg, Man.; M.H.K. Shokeir, University of Saskatchewan Hospital, Saskatoon; S. Bamforth and S. Grover, University of Alberta Hospital, Edmonton; and O. Suchowersky and M. Klimek, Alberta Children's Hospital, Calgary.
We are indebted to all the members of the Canadian Collaborative Study of Predictive Testing for Huntington's Disease for their extensive support and cooperation.
Source Information
From the Departments of Health Care and Epidemiology (S.W., S.B.S., M.T.S.) and Medical Genetics (P.W., M.H., S.A., J.T., MB., M.R.H.), University of British Columbia, Vancouver. Address reprint requests to Dr. Hayden at the Department of Medical Genetics, University of British Columbia, Rm. 416, 2125 E. Mall, Vancouver, BC V6T 1Z4, Canada.
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