Background: Huntington's disease (HD) is an autosomal, dominant neurodegenerative disorder characterized by motor impairment, cognitive decline, personality change, and increased susceptibility for mental disorders. Symptoms typically occur at 40 years of age and progress without remission until death 15–20 years later. A CAG trinucleotide repeat showing expansion on the HD chromosome permits direct testing of the mutation. At present, there is no effective treatment for HD. Suicidal behavior, an increased frequency of psychiatric dysfunction, and elevated social catastrophic events are well recognized in HD.
Aims: The aim was to evaluate depression and psychosocial health of carriers and non-carriers for HD after the disclosure of results of predictive testing. This two-year follow-up of psychological effects of predictive testing was carried out in Stockholm, Sweden.
Methods: Questionnaires assessing depression, general health, well-being, self injurious behavior, life satisfaction, and lifestyle were completed by 35 carriers and 58 non-carriers before the predictive test, and 2, 6, 12, and 24 months afterwards.
Results: Both carriers and non-carriers showed high suicidal ideation before the predictive testing. Depression scores and frequency of suicidal thoughts increased more for carriers, compared to non-carriers, over 24 months. There were no differences regarding life satisfaction or life style between the groups. About one third of the all subjects reported psychiatric symptoms, and two thirds had a close relative with a psychiatric disorder related to HD. Both groups showed considerably higher tendencies for suicidal behavior and psychiatric dysfunction than the normal population in Sweden.
Conclusion: Assessing suicidal ideation and providing psychosocial support over time is of utmost importance.
