A qualitative exploration of participant and investigator perspectives from the TRED-HF trial
Author(s)
Type
Journal Article
Abstract
Aim
We explored the experiences and motivations of participants and staff who took part in the TRED-HF trial (Therapy withdrawal in REcovered Dilated cardiomyopathy).
Methods
We conducted a qualitative study, using semi-structured interviews, with participants (n=12) and the research team (n=4) from the TRED-HF trial. Interviews were carried out in 2019 and were audio-recorded and transcribed. Data were managed using NVivo and analysed using framework analysis. A patient representative provided guidance on the interpretation of findings and presentation of themes to ensure these remained meaningful, and an accurate representation, to those living with dilated cardiomyopathy.
Results
Three key themes emerged from the data: (1) perception of health; (2) experiences and relationships with healthcare services and researchers; and (3) perception of risk. Study participants held differing perceptions of their health; some did not consider themselves to have a heart condition or disagreed with the medical term ‘heart failure’. Relationships between participants, research staff and clinical management teams influenced participants’ experiences and decision-making during the trial, including following clinical advice. There were differences in participants’ perceptions of risk and their decisions to take heart failure medication after the trial was completed. Although the original TRED-HF trial did not provide the results many had hoped for, a strong motivator for taking part was the opportunity to withdraw medication in a safely monitored environment which had been previously considered by some participants before. Investigators acknowledged that the insights gained from the study can now be used to support evidence-based conversations with patients.
Conclusion
For people whose dilated cardiomyopathy is in remission, decisions to continue, reduce or stop their medication are influenced by perceptions of personal health, perceive risk and the important of work, employment, recreation, relationships and long-term plans. The unique relationship between patient and cardiologist provides opportunities to promote honest discussion about adherence to medication and personalised long-term management.
Keywords
Cardiomyopathy, Dilated; Feasibility Studies; Medication Adherence; Patient Participation; Physician-Patient Relations; Qualitative Research.
We explored the experiences and motivations of participants and staff who took part in the TRED-HF trial (Therapy withdrawal in REcovered Dilated cardiomyopathy).
Methods
We conducted a qualitative study, using semi-structured interviews, with participants (n=12) and the research team (n=4) from the TRED-HF trial. Interviews were carried out in 2019 and were audio-recorded and transcribed. Data were managed using NVivo and analysed using framework analysis. A patient representative provided guidance on the interpretation of findings and presentation of themes to ensure these remained meaningful, and an accurate representation, to those living with dilated cardiomyopathy.
Results
Three key themes emerged from the data: (1) perception of health; (2) experiences and relationships with healthcare services and researchers; and (3) perception of risk. Study participants held differing perceptions of their health; some did not consider themselves to have a heart condition or disagreed with the medical term ‘heart failure’. Relationships between participants, research staff and clinical management teams influenced participants’ experiences and decision-making during the trial, including following clinical advice. There were differences in participants’ perceptions of risk and their decisions to take heart failure medication after the trial was completed. Although the original TRED-HF trial did not provide the results many had hoped for, a strong motivator for taking part was the opportunity to withdraw medication in a safely monitored environment which had been previously considered by some participants before. Investigators acknowledged that the insights gained from the study can now be used to support evidence-based conversations with patients.
Conclusion
For people whose dilated cardiomyopathy is in remission, decisions to continue, reduce or stop their medication are influenced by perceptions of personal health, perceive risk and the important of work, employment, recreation, relationships and long-term plans. The unique relationship between patient and cardiologist provides opportunities to promote honest discussion about adherence to medication and personalised long-term management.
Keywords
Cardiomyopathy, Dilated; Feasibility Studies; Medication Adherence; Patient Participation; Physician-Patient Relations; Qualitative Research.
Date Issued
2021-10
Date Acceptance
2021-07-05
Citation
ESC Heart Failure, 2021, 8 (5), pp.3760-3768
ISSN
2055-5822
Publisher
Wiley Open Access
Start Page
3760
End Page
3768
Journal / Book Title
ESC Heart Failure
Volume
8
Issue
5
Copyright Statement
© 2021 The Authors. ESC Heart Failure published by John Wiley & Sons Ltd on behalf of European Society of Cardiology.
This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
License URL
Sponsor
British Heart Foundation
British Heart Foundation
Imperial College Healthcare NHS Trust- BRC Funding
National Institute for Health Research
Imperial College Healthcare NHS Trust- BRC Funding
Imperial College Healthcare NHS Trust: Research Capability Funding (RCF)
Identifier
https://onlinelibrary.wiley.com/doi/10.1002/ehf2.13524
Grant Number
FS/15/29/31492
FS/ICRF/21/26019
RDF01
NF-SI-0617-10116
RDC02 79560
RDF04
Subjects
Science & Technology
Life Sciences & Biomedicine
Cardiac & Cardiovascular Systems
Cardiovascular System & Cardiology
Cardiomyopathy
Dilated
Feasibility studies
Medication adherence
Patient participation
Physician-patient relations
Qualitative research
HEART-FAILURE
PATIENT
MANAGEMENT
PHYSICIAN
CARE
Cardiomyopathy
Dilated
Feasibility studies
Medication adherence
Patient participation
Physician-patient relations
Qualitative research
Cardiomyopathy, Dilated
Heart Failure
Humans
Qualitative Research
1102 Cardiorespiratory Medicine and Haematology
Publication Status
Published
Date Publish Online
2021-08-13