Survey of Essential tremor patients on their knowledge about the genetics of the disease

A group of essential tremor (ET) patients were surveyed on their knowledge of the genetics of ET in order to provide important information to clinicians who care for and educate patients about this disease. ET patients were ascertained from neurologists at Columbia-Presbyterian Medical Center. A 5- to 10-minute survey was administered to assess knowledge of the genetics of ET. Fifty ET patients had been living with their disease for a mean of 24.2 years. Approximately half (n = 27) reported a family history of ET. When asked, "What causes ET," 12 (24%) replied that it was "hereditary." Even among the 27 who reported a family history, only 25.9% replied that it was "hereditary." A minority of patients (12 [24%]) thought that it was "very likely" that other members of their family would develop the disease some day. Three patients were aware that genetic linkage had been established. Our findings suggest that the majority of patients with ET are not well informed about the genetic basis for the disease. Because of recent advances in genetic research, physicians may need to incorporate more genetic information and education into their practice, including information on risk to other family members and genetic testing. It is hoped that these survey results could be used to improve patient education and to provide clinicians with further insight "into patients' perspectives.