Predictive testing for Huntington disease: II. Demographic characteristics, life-style patterns, attitudes, and psychosocial assessments of the first fifty-one test candidates

Abstract

Predictive testing was offered to individuals at-risk for Huntington disease living within a 100-mile radius of Vancouver, BC. Ninety-five at-risk individuals, representing approximately 12.6% of eligible candidates in this area, have enrolled in its first 16 months. This paper reports on the psychosocial characteristics of the first 51 at-risk individuals to complete the initial assessment.

Two-thirds of the candidates are female with a mean age 39.3 years. They derive from higher socioeconomic backgrounds. Reasons for taking the test included planning for the future, concern for their children, and reducing uncertainty. Only 29.4% of candidates would both desire prenatal testing and terminate a high-risk pregnancy. Results on the SCL 90(R), General Well-Being, and other scales indicate that the candidates' mental health is representative of the population, but as a group, they are more resourceful. The tests identified individuals who needed further assessment on the basis of previous and current psychiatric functioning and social support. No candidate was a high immediate suicidal risk.

The process of personal assessment has had beneficial effects on personal growth. The self-selection of a healthy group of candidates emphasizes the need for continued assessment and support as possibly less healthy candidates register for predictive testing programs in the future.