More understanding of disease inheritance promotes family communication

1st June 2015

Patients need to better understand the genetics of hypertrophic cardiomyopathy to help communicate the risk of the disease to other family members.

That is the conclusion of a study looking into family communications in those at risk of hypertrophic cardiomyopathy (HCM).

When someone is diagnosed with the condition it is them, rather than medical people, responsible for telling family members they might also be at risk. Encouraging family communications forms part of the genetic counselling process.

The study, led by a team in the department of human genetics at the University of Michigan in America, looked at identifying factors that affected communication in HCM families.

Nearly 400 people completed an online survey assessing the family (gender, genetic test results, HCM family history and severity of the disease), how the illness appeared, family cohesiveness, copying styles, comprehension of how the disease is passed on to family members and communication of the HCM information to relatives at risk.

Those taking part were recruited through the US’s Hypertrophic Cardiomyopathy Association.

Data from 183 people was analysed. The researchers found that women and those with more understanding of how the disease was passed on increased the level of communication to siblings and children.

They concluded that promoting patient comprehension was important and may positively impact family communication in families.

Ref: Family communication in a population at risk for hypertrophic cardiomyopathy. Batte B, Sheldon JP, Arscott P, Huismann DJ, Salberg L, Day SM, Yashar BM.