Use of an aid to improve communication of genetic risk information amongst families with hypertrophic cardiomyopathy.

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Genetic testing in the era of next generation sequencing technologies brings unique challenges to the genetic counselling of families. Families are confronted with large quantities of complex information for which they hold the responsibility of communicating with family members. In order to communicate genetic results or risk information the proband must have adequate understanding of the information received. Several studies indicate this may be problematic, and some individuals may not retain or understand the information presented to them. Few resources exist which aim to facilitate the process of cardiac genetic testing for patient understanding, recall and ability to communicate. Data from our research indicates cardiac genetic testing understanding, recall and ability to communicate risk to relatives may be insufficient in a subset of patients. Efforts to better communicate this information is therefore critical. We have developed a communication aid which aims to assist communication of genetic results and risk to family members. Feasibility and acceptability of the aid has been proven through a pilot study. We are seeking to determine whether a genetic counsellor- led intervention incorporating a communication aid improves knowledge, satisfaction and patient empowerment compared to current clinical practice. In addition, we aim to assess the dissemination of genetic risk information amongst family members. We are utilising a randomised controlled trial methodology. Eligible patients diagnosed with hypertrophic cardiomyopathy (with a genetic result available and ready for return) will be recruited to intervention or control. Those randomised to control will receive their result as per current clinical practice within the genetic heart disease clinic. This typically involves return of result by the genetic counsellor and cardiologist. Return of result is usually conducted after clinical cardiology review of the patient in their annual clinical review appointment.Those randomised to intervention will receive their result from a genetic counsellor with use of the communication aid. Primary and secondary outcomes will be compared between the two groups.