Larsson Maria U, Luszcz Mary A, Bui The-Hung, Wahlin Tarja-Brita Robins
Neurotec Department, Karolinska Institutet, Stockholm, Sweden.
J Genet Couns. 2006 Oct;15(5):361-74. doi: 10.1007/s10897-006-9027-6.
The present study reports a two-year follow-up of psychological effects of predictive testing for Huntington's disease. 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. Both carriers and non-carriers showed high suicidal ideation before the predictive testing. Depression scores and frequency of suicidal thoughts increased for carriers, compared to non-carriers, over time. There were no differences regarding life satisfaction or life style between carriers and non-carriers. Predictive testing was beneficial in reducing overall ill-health symptoms and increasing well-being for those initially expressing concern about Huntington's disease. The importance of assessing suicidal ideation and of continuing to provide adequate support is emphasized.
本研究报告了对亨廷顿舞蹈症预测性检测心理影响的两年随访情况。35名携带者和58名非携带者在预测性检测前以及检测后的2个月、6个月、12个月和24个月完成了评估抑郁、总体健康状况、幸福感、自我伤害行为、生活满意度和生活方式的问卷调查。在预测性检测前,携带者和非携带者均表现出较高的自杀意念。随着时间推移,与非携带者相比,携带者的抑郁得分和自杀念头频率有所增加。携带者和非携带者在生活满意度或生活方式方面没有差异。对于那些最初对亨廷顿舞蹈症表示担忧的人来说,预测性检测有助于减少总体健康不佳症状并提高幸福感。强调了评估自杀意念以及持续提供充分支持的重要性。