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Cardiomyopathies & Heart Failure
Original research
Exploring the acceptability of implantable defibrillators in patients with cardiac dystrophinopathy and carers
  1. Ursula M Hiermeier1,
  2. Christine Baker1 and
  3. John P Bourke2,3
  1. 1Department of Clinical Health Psychology, Royal Victoria Infirmary, Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK
  2. 2Department of Cardiology, Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK
  3. 3Institute of Translational and Clinical Research, Newcastle University, Newcastle upon Tyne, Tyne and Wear, UK
  1. Correspondence to Dr John P Bourke; john.bourke{at}nhs.net

Abstract

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.

  • cardiomyopathy dilated
  • implantable cardioverter defibrillator (ICD)
  • sudden cardiac death
  • gene expression
  • delivery of care
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/openhrt-2019-001230

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    Footnotes

    • Contributors UMH: study design, recording and transcribing focus group sessions, thematic analysis, manuscript preparation, revision for content and proofing. CB: study design, leading and facilitating focus group sessions, thematic analysis, manuscript preparation, revision for content and proofing; responsible for the overall content as guarantor of all thematic analyses. JPB: study concept, protocol design and data acquisition, obtaining funding, study supervision, interpretation of data, drafting manuscript for content, final approval of manuscript, accountable for all aspects of the research.

    • Funding The research team received funding support from 'Charitable Funds' at Newcastle upon Tyne Hospitals NHS Foundation Trust. Study sponsor: Newcastle upon Tyne Hospitals NHS Foundation Trust, UK, was the NHS sponsor for this research.

    • Disclaimer Charitable Trustees did not have any role in study design, data analysis, results interpretation or manuscript preparation. The Trust has not had any role in the design of the study or its protocol, nor did it play any part in the analysis of results or had influence/authority over the presentation of its findings.

    • Competing interests JPB reports funding support from 'Charitable Funds', NUTH NHS Foundation Trust for this research and a grant from British Heart Foundation for another DMD-related research study ongoing over the same time period.

    • Patient consent for publication Not required.

    • Ethics approval Ethics approval for the study was granted by ORECI-Northern Ireland Committee, UK (IRAS project ID: 215892).

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement All data relevant to the study are included in the article or uploaded as supplementary information. Additional participant quotes on which the analysis has been based are either included in the manuscript or in the appendix supplied as part of this submission.