On Saturday 22 July we held a crucial, one of it’s kind Cardiac Focus Group, at the Action Duchenne offices in Leytonstone, East London.We held the meeting to establish from patients with Duchenne muscular dystrophy whether, if their hearts became weakened more than a certain amount, they would want to know that there was a possibility of heart rhythm collapse episodes occurring. Secondly, from their perspective, what level of risk of experiencing ‘collapse without warning’ would they need to be at before they themselves would consider having an automatic defibrillator implanted.Weakness in the heart muscle can develop silently in almost all children/adults with Duchenne, often from the age of 13. Symptoms generally appear as a very late sign of heart pumping weakness. Patients with Duchenne are not recommended defibrillator therapy (ICDs) currently, however, in other heart conditions, the devices are recommended, acting as ‘one’s own paramedic’ returning the heart to a normal beating pattern within seconds. We wished to learn about the range of views people living with Duchenne may have about ICDs as a potential treatment and how it might be introduced and talked about with people living with Duchenne and their families. The research team in attendance comprised consultant cardiologist Dr John Bourke and clinical psychologist Dr Christine Baker of the NUT Hospitals NHS Trust, Newcastle. We posed questions to the 12 people in attendance and their responses are being collated with the findings to be submitted to a medical journal for publication; this could be a life saving treatment for people living with Duchenne.
The meeting was such a resounding success, we held a follow up meeting via webinar.Register your interest in attending the next cardiac focus group.
