Related Experiment Videos
High suicidal ideation in persons testing for Huntington's disease.
T B Robins Wahlin1, L Bäckman, A Lundin
1Stockholm Gerontology Research Center, Department of Clinical Neuroscience and Occupational Therapy and Elderly Care Research, Karolinska Institute, Sweden. Tarja-Brita.Robins.Wahlin@neurotec.ki.se
Acta Neurologica Scandinavica
|September 15, 2000
Summary
Huntington's disease predictive testing revealed no differences in well-being between gene carriers and non-carriers. However, both groups exhibited high rates of suicidal ideation and psychiatric dysfunction, highlighting the need for psychological support.
Area of Science:
- Neurogenetics
- Psychiatry
- Genetic Counseling
Background:
- Predictive testing for Huntington's disease (HD) offers individuals genetic information but carries potential psychosocial implications.
- Early adoption of HD predictive testing programs (1990-1995) provides a unique cohort for long-term psychosocial impact assessment.
- Understanding the psychological effects of presymptomatic genetic testing is crucial for developing effective support strategies.
Purpose of the Study:
- To evaluate the psychosocial effects of Huntington's disease predictive testing on early participants.
- To compare psychological well-being, life satisfaction, and lifestyle between HD gene carriers and non-carriers.
- To identify the need for psychological support and counseling within a predictive testing program.
Main Methods:
- A psychosocial investigation was conducted on the initial cohort registered in the Stockholm, Sweden Huntington's disease predictive testing program (1990-1995).
- Comparison of pretest attitudes, expectations, well-being, life satisfaction, lifestyle, need for support, and health status between gene carriers (n=13) and non-carriers (n=21).
- Assessment of suicidal ideation, self-injurious behavior, psychiatric dysfunction, and family history of psychiatric illness.
Main Results:
- No significant differences were found between gene carriers and non-carriers in pretest attitudes, expectations, general well-being, life satisfaction, lifestyle, need for support, or perceived health.
- Both gene carriers and non-carriers reported high levels of suicidal ideation and self-injurious behavior.
- Non-carriers showed a particularly high frequency of attempted suicide, with both groups exhibiting pronounced psychiatric dysfunction. Relatives also had high rates of psychiatric diseases and suicide attempts.
Conclusions:
- While predictive testing for Huntington's disease did not reveal differential psychosocial impacts on well-being between carriers and non-carriers, both groups displayed significant psychiatric distress.
- The high prevalence of suicidal ideation, self-injurious behavior, and psychiatric dysfunction underscores the critical need for robust psychological support and counseling protocols.
- Emphasis on proactive suicide risk assessment and comprehensive psychosocial care is essential for participants undergoing predictive genetic testing for neurodegenerative diseases.