Attitudes of patients and their relatives to Huntington's disease

Abstract

Reaction to medical, social, and genetic implications of Huntington's disease was evaluated by means of a questionnaire mailed to members of a lay organization concerned with this disease in the United States. One thousand and sixty-five of the approximately 2600 members chose to respond. Patients and those at high risk found physical disabilities most disturbing while mental deterioration and personality change were the most disturbing to spouses of patients. The best source of information regarding the disease for 46% was the lay organization itself. Medical specialists or genetic counsellors were cited as the best source of information by 18%. The transmission risk in Huntington's disease was correctly stated to be one-half by 92% of all respondents including 94% of those who indicated the lay organization as best source and 91% of those who indicated medical specialists and genetic ounsellors as best source. If at risk for Huntington's disease, 86% of respondents would modify their family size; desire for limitation was greatest among those affected but lowest among young adults at high risk. If a screening test were available, 23% at high risk might refuse it.