Exploring patient acceptability of implantable defibrillators in DMD
Research type
Research Study
Full title
Exploring acceptability of implantable defibrillator therapy and impact of discussing arrhythmia risk in patients with Duchenne muscular dystrophy with advanced left ventricular dysfunction
IRAS ID
215892
Contact name
John Bourke
Contact email
Sponsor organisation
NUTH NHS Foundation Trust
Duration of Study in the UK
0 years, 6 months, 0 days
Research summary
Implantable cardiac defibrillators [ICD] detect and treat serious heart rhythm disturbances automatically and are widely used to prevent sudden cardiac death in patients with severely 'damaged' heart resulting from various causes. Progressive heart muscle weakness occurs in most patients with Duchenne muscular dystrophy (DMD). However, because DMD is a progressive muscle wasting disorder with widespread implications for mobility, breathing and life expectancy as well as its heart effects, the impact of preventing death from heart rhythm causes on quality of life and overall survival is unknown. Furthermore, because progressive heart pumping weakness in DMD remains asymptomatic throughout much of its course when treated appropriately, it cannot be assumed that even discussing the possibility of sudden cardiac death with these patients will always be beneficial or that they would want to have an ICD implanted to prevent a fatal arrhythmia. A handful of patients with DMD and severe left ventricular dysfunction have had their arrhythmia risk discussed with them at routine follow-up clinics in Newcastle. Patient reactions have varied and not all have wanted to consider ICD implantation. However, some of those that have had ICDs implanted have received therapy for spontaneous episodes or fast or slow arrhythmias which probably would have been fatal otherwise. Against this background, the aim of this project is to determine patient and carer views on ICD use in DMD more systematically by means of two short focus group sessions (one for patients / another for carers) and analyse themes and responses using established methodology for qualitative research. It is expected that the results will clarify current clinical uncertainties and inform best practice recommendations on this aspect of DMD care.
REC name
HSC REC A
REC reference
17/NI/0013
Date of REC Opinion
6 Feb 2017
REC opinion
Further Information Favourable Opinion