2nd Workshop Neurogenetics in Germany, Munich, October 19-21, 1995
Huntington's disease, olivo-ponto-cerebellar ataxias (SCA 1 and 3), and familial spastic paraplegia are autosomal dominant, neurodegenerative disorders. A predictive diagnostic (PDD) is possible by indirect or direct DNA analysis.
We investigated, by questionnaire, coping strategies of persons at risk (RP) who have taken part in this diagnostic test. More than 80% of the investigated RP would undertake PDD once more for the same cause. The main motives for undertaking the investigation were the wish to know (70%) and the necessity to make decisions for the future (40%).
Before testing, more than 80% of the RP had psychosomatic symptoms, after testing only 35% of the RP. More than 50% of the RP had had the wish for a child before and only 30% after testing. About 30% of the RP had problems with family members before and 20% after PDD. Individuals with a bad result had problems more often with family members.
Genetic counselling is more important for RP after (70%) than before testing (40%). Psychological support was taken up more before (about 60%) than after testing (30%). Most RP consider psychological support to be very important.
predictive diagnostic (PDD)