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Lookup NU author(s): Dr John Bourke
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© 2020 Author(s).Objective Unlike for patients with other forms of cardiomyopathies, those with severe ventricular dysfunction due to Duchenne muscular dystrophy (DMD) are not offered implantable cardioverter-defibrillator (ICD) therapy routinely. This prospective study aimed to determine the views of DMD-patients and their carers about discussing sudden death risk and their acceptance of ICDs. Design and setting Adults with DMD (n=9) and parents/carers (n=9) participated in audio-recorded, 60-90 min focus group sessions (patients 2; parents/carers 2) conducted through either a face-to-face session at a neutral venue or a videoconference. Sessions were facilitated by a clinical psychologist, experienced in conducting focus group research. All participants understood the rationale for the study and the nature of ICD therapy. The same predefined themes were explored with each group. Recordings were transcribed, analysed thematically by two researchers, working independently and then agreed. Differences in responses between patient and carer groups were also studied and compared. Participants all provided informed written consent and the study had ethical approval. Results Three main themes emerged: (1) access to/quality of information provided by professionals and patient engagement with them; (2) decision-making about ICDs; (3) individuals' own 'lived experience' of DMD. Conclusions The main findings were: (1) patients with DMD want to have their risk of sudden arrhythmic death discussed, when relevant and (2) if ICD therapy were established as beneficial, they would welcome an individualised discussion about its appropriateness for them.
Author(s): Hiermeier UM, Baker C, Bourke JP
Publication type: Article
Publication status: Published
Journal: Open Heart
Online publication date: 21/04/2020
Acceptance date: 14/02/2020
ISSN (print): 2398-595X
ISSN (electronic): 2053-3624
Publisher: BMJ Publishing Group
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