A worldwide assessment of the frequency of suicide, suicide attempts, or psychiatric hospitalization after predictive testing for Huntington disease

Prior to the implementation of predictive-testing programs for Huntington d isease (HD), significant concern was raised concerning the likelihood of ca tastrophic events (CEs), particularly in those persons receiving an increas ed-risk result. We have investigated the frequency of CEs-that is, suicide, suicide attempt, and psychiatric hospitalization-after an HD predictive-te sting result, through questionnaires sent to predictive-testing centers wor ldwide. A total of 44 persons (0.97%) in a cohort of 4,527 test participant s had a CE: 5 successful suicides, 21 suicide attempts, and 18 hospitalizat ions for psychiatric reasons. All persons committing suicide had signs of H D, whereas 11 (52.4%) of 21 persons attempting suicide and 8 (44.4%) of 18 who had a psychiatric hospitalization were symptomatic, A total of 11 (84.6 %) of 13 asymptomatic persons who experienced a CE during the first year af ter HD predictive testing received an increased-risk result. Factors associ ated with an increased risk of a CE included (a) a psychiatric history less than or equal to 5 years prior to testing and (b) unemployed status. The f requency of CEs did not differ between those persons receiving results of p redictive testing through linkage analysis in whom there was only changes i n direction of risk and those persons receiving definitive results after an alysis for the mutation underlying HD. These findings provide insights into the frequency, associated factors, and timing of CEs in a worldwide cohort of persons receiving predictive-testing results and, as such, highlight pe rsons for whom ongoing support may be beneficial.