While revealing the presence of Huntington Disease (HD) within the family setting has received considerable research interest, the sources of information and the detail of which aspects of the illness are discussed remains unexplored. This study's primary aim was to identify HD information sources, both professional and family, and to describe the types of information received by members of affected families, with the hypothesis that some aspects of the disorder would be more fully addressed than others.

Clients drawn from a specialist genetic unit looking after families with HD (n = 46) were engaged in structured interviews and completed standardized questionnaires, including: the psychological adjustment to genetic information scale (PAGIS); and a current psychological distress measure (K10). Participants obtained HD related information from a mean of 4.76 sources (49.3% professional).

As expected, genetic and neurological symptoms were more frequently described (97.7% and 86.4% respectively) than cognitive and psychological/psychiatric (63.6%; 52.3%). Regression analyses were used to identify potential predictors of current distress, adjustment, and information satisfaction. Rated satisfaction with information received was higher among participants with a gene positive family member. Across the PAGIS sub-scales, there were differential associations with the predictors examined.

Given that HD is a multi-faceted condition affecting the entire family, needs would be better addressed if information provided went beyond discussion of genetic and movement disorders, and extended to the cognitive, psychological and behavioral aspects which are strongly associated with quality of life.

The authors have not supplied their declaration of competing interest.