Communication of risk in families living with Huntington’s disease: a web survey to explore what they think, what they do.

Huntington’s disease (HD) is a neurodegenerative, autosomal dominant, late-onset disease neither curable nor preventable. We explored parental practices of informing children of risk for HD and the differences, if any, in truth disclosure from a generation to the other. An anonymous Internet survey was proposed to visitors from HD families on the lay Association website www.aichroma.com.
The survey explored the following issues:
• The way they, as children, had been informed of risk for HD
• The best age to receive the information and the ideal provider
• Whether being informed is useful or not
• The way they, as parents, had informed (or planned to inform) their children
Eighty-five-individuals responded: 80 were HD families members and 5 partners.
Preliminary data show that parents have difficulty communicating children about disease and risk. The majority of respondents had children in condition of risk: about 80% of children had a parent who was carrier or symptomatic or at risk. Among respondents, those who did not have
children stated they would inform them in case they had while the majority of those who actually had children did not provide any information nor showed any clear intention of doing it in the future.
Telling children the truth about HD and risk raises ambivalence. The opportunity to access good sources of counseling and support seems relevant in order to enable families to manage the emotional distress of giving such information.