Importance and assessment of quality of life in symptomatic permanent atrial fibrillation:  Patient focus groups from the RATE-AF trial

Jackie Jones; Mary Stanbury; Sandra Haynes; Karina Bunting; Trudie Lobban; A John Camm; Melanie Calvert; Dipak Kotecha

doi:10.1159/000511048

Importance and assessment of quality of life in symptomatic permanent atrial fibrillation: Patient focus groups from the RATE-AF trial

Jackie Jones, Mary Stanbury, Sandra Haynes , Karina Bunting, Trudie Lobban, A John Camm, Melanie Calvert, Dipak Kotecha

Research output: Contribution to journal › Article › peer-review

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Abstract

Aims: To establish the extent and impact of symptoms in patients with atrial fibrillation (AF), the importance of different aspects of quality of life (QoL), and how we should assess wellbeing. Methods: Focus groups of patients with symptomatic permanent AF in a trial of heart rate control; the RATE-AF trial randomised 160 patients aged ≥60 years with permanent AF and at least NYHA class II dyspnoea to either digoxin or beta-blockers. Patient and public representatives led the focus groups and performed all data acquisition and analysis, using thematic approaches to interpret patient views about QoL and its measurement. Results: Substantial impairment of health-related QoL was noted in 160 trial patients, with impact on all domains apart from mental health. Eight women and 11 men aged 61–87 years participated in the focus groups. Common themes were a lack of information from healthcare professionals about AF, a lack of focus on QoL in consultations, and a sense of frustration, isolation, and reduced confidence. There was marked variability in symptoms in individual patients, with some describing severe impact on activities of daily living, and profound interaction with comorbidities such as arthritis. Day-to-day variation in QoL and difficulty in attributing symptom burden to AF or other comorbidities led to challenges in questionnaire completion. Consensus was reached that collecting both general and AF-specific QoL would be useful in routine practice, along with participation in peer support, which was empowering for the patients. Conclusions: The impact of comorbidities is poorly appreciated in the context of AF, with considerable variability in QoL that requires both generic and AF-specific assessment. Improvement in QoL should direct the appraisal, and reappraisal, of treatment decisions for patients with permanent AF.

Original language	English
Pages (from-to)	666-675
Number of pages	10
Journal	Cardiology
Volume	145
Issue number	10
DOIs	https://doi.org/10.1159/000511048
Publication status	Published - 28 Aug 2020

Bibliographical note

Funding Information:
This mixed methods study was part of the RATE-AF trial programme, a prospective, open-label, blinded endpoint, randomised controlled trial of 160 patients with symptomatic permanent AF. The trial is the first to directly compare longer-term heart rate con- trol using digoxin and beta-blocker therapy in this patient group (clinicaltrials.gov: NCT02391337, ISRCTN: 95259705, and Eu-draCT: 2015-005043-13). The rationale and design of the study have previously been described [7]; in brief, the trial was embedded within the UK National Health Service (NHS), with minimal selection criteria to reflect routine clinical care. Patients were aged 60 years or older, with permanent AF, in need of rate control, and breathlessness equivalent to at least New York Heart Association (NYHA) class II. As per guidelines, permanent AF was characterised as a physician decision for rate control with no plans for car-dioversion, antiarrhythmic drugs, or ablation [9]. We only excluded patients with either clear requirements or contraindications for either drug, for example myocardial infarction in the last 6 months, a history of severe bronchospasm, bradycardia, or previous intolerance. The RATE-AF trial and the qualitative aspects were sponsored by the University of Birmingham and funded by the UK National Institute for Health Research (NIHR).

Keywords

Assessment
Atrial fibrillation
Focus group
Qualitative
Quality of life

ASJC Scopus subject areas

Cardiology and Cardiovascular Medicine
Pharmacology (medical)

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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https://doi.org/10.1159/000511048Licence: Creative Commons: Attribution (CC BY)

1 Finished
1 Active

BHF Research Accelerator Award
Bicknell, R., Watson, S., Rainger, E., Senis, Y., Fabritz, L. & Kirchhof, P.
British Heart Foundation
1/04/19 → 30/09/24
Project: Research
Optimising rate-control therapy in older patients with AF - a training fellowship and pilot study focused on improving quality of life (RATE-AF)
Mathers, J., Calvert, M., Kotecha, D., Deeks, J., Kirchhof, P., Jowett, S. & Windridge, D.
NIHR TRAINEES COORDINATING CENTRE
1/01/16 → 31/12/19
Project: Other Government Departments

Cite this

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title = "Importance and assessment of quality of life in symptomatic permanent atrial fibrillation: Patient focus groups from the RATE-AF trial",

abstract = "Aims: To establish the extent and impact of symptoms in patients with atrial fibrillation (AF), the importance of different aspects of quality of life (QoL), and how we should assess wellbeing. Methods: Focus groups of patients with symptomatic permanent AF in a trial of heart rate control; the RATE-AF trial randomised 160 patients aged ≥60 years with permanent AF and at least NYHA class II dyspnoea to either digoxin or beta-blockers. Patient and public representatives led the focus groups and performed all data acquisition and analysis, using thematic approaches to interpret patient views about QoL and its measurement. Results: Substantial impairment of health-related QoL was noted in 160 trial patients, with impact on all domains apart from mental health. Eight women and 11 men aged 61–87 years participated in the focus groups. Common themes were a lack of information from healthcare professionals about AF, a lack of focus on QoL in consultations, and a sense of frustration, isolation, and reduced confidence. There was marked variability in symptoms in individual patients, with some describing severe impact on activities of daily living, and profound interaction with comorbidities such as arthritis. Day-to-day variation in QoL and difficulty in attributing symptom burden to AF or other comorbidities led to challenges in questionnaire completion. Consensus was reached that collecting both general and AF-specific QoL would be useful in routine practice, along with participation in peer support, which was empowering for the patients. Conclusions: The impact of comorbidities is poorly appreciated in the context of AF, with considerable variability in QoL that requires both generic and AF-specific assessment. Improvement in QoL should direct the appraisal, and reappraisal, of treatment decisions for patients with permanent AF.",

keywords = "Assessment, Atrial fibrillation, Focus group, Qualitative, Quality of life",

author = "Jackie Jones and Mary Stanbury and Sandra Haynes and Karina Bunting and Trudie Lobban and Camm, {A John} and Melanie Calvert and Dipak Kotecha",

note = "Funding Information: This mixed methods study was part of the RATE-AF trial programme, a prospective, open-label, blinded endpoint, randomised controlled trial of 160 patients with symptomatic permanent AF. The trial is the first to directly compare longer-term heart rate con- trol using digoxin and beta-blocker therapy in this patient group (clinicaltrials.gov: NCT02391337, ISRCTN: 95259705, and Eu-draCT: 2015-005043-13). The rationale and design of the study have previously been described [7]; in brief, the trial was embedded within the UK National Health Service (NHS), with minimal selection criteria to reflect routine clinical care. Patients were aged 60 years or older, with permanent AF, in need of rate control, and breathlessness equivalent to at least New York Heart Association (NYHA) class II. As per guidelines, permanent AF was characterised as a physician decision for rate control with no plans for car-dioversion, antiarrhythmic drugs, or ablation [9]. We only excluded patients with either clear requirements or contraindications for either drug, for example myocardial infarction in the last 6 months, a history of severe bronchospasm, bradycardia, or previous intolerance. The RATE-AF trial and the qualitative aspects were sponsored by the University of Birmingham and funded by the UK National Institute for Health Research (NIHR).",

year = "2020",

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doi = "10.1159/000511048",

language = "English",

volume = "145",

pages = "666--675",

journal = "Cardiology",

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T2 - Patient focus groups from the RATE-AF trial

AU - Jones, Jackie

AU - Stanbury, Mary

AU - Haynes , Sandra

AU - Bunting, Karina

AU - Lobban, Trudie

AU - Camm, A John

AU - Calvert, Melanie

AU - Kotecha, Dipak

N1 - Funding Information: This mixed methods study was part of the RATE-AF trial programme, a prospective, open-label, blinded endpoint, randomised controlled trial of 160 patients with symptomatic permanent AF. The trial is the first to directly compare longer-term heart rate con- trol using digoxin and beta-blocker therapy in this patient group (clinicaltrials.gov: NCT02391337, ISRCTN: 95259705, and Eu-draCT: 2015-005043-13). The rationale and design of the study have previously been described [7]; in brief, the trial was embedded within the UK National Health Service (NHS), with minimal selection criteria to reflect routine clinical care. Patients were aged 60 years or older, with permanent AF, in need of rate control, and breathlessness equivalent to at least New York Heart Association (NYHA) class II. As per guidelines, permanent AF was characterised as a physician decision for rate control with no plans for car-dioversion, antiarrhythmic drugs, or ablation [9]. We only excluded patients with either clear requirements or contraindications for either drug, for example myocardial infarction in the last 6 months, a history of severe bronchospasm, bradycardia, or previous intolerance. The RATE-AF trial and the qualitative aspects were sponsored by the University of Birmingham and funded by the UK National Institute for Health Research (NIHR).

PY - 2020/8/28

Y1 - 2020/8/28

N2 - Aims: To establish the extent and impact of symptoms in patients with atrial fibrillation (AF), the importance of different aspects of quality of life (QoL), and how we should assess wellbeing. Methods: Focus groups of patients with symptomatic permanent AF in a trial of heart rate control; the RATE-AF trial randomised 160 patients aged ≥60 years with permanent AF and at least NYHA class II dyspnoea to either digoxin or beta-blockers. Patient and public representatives led the focus groups and performed all data acquisition and analysis, using thematic approaches to interpret patient views about QoL and its measurement. Results: Substantial impairment of health-related QoL was noted in 160 trial patients, with impact on all domains apart from mental health. Eight women and 11 men aged 61–87 years participated in the focus groups. Common themes were a lack of information from healthcare professionals about AF, a lack of focus on QoL in consultations, and a sense of frustration, isolation, and reduced confidence. There was marked variability in symptoms in individual patients, with some describing severe impact on activities of daily living, and profound interaction with comorbidities such as arthritis. Day-to-day variation in QoL and difficulty in attributing symptom burden to AF or other comorbidities led to challenges in questionnaire completion. Consensus was reached that collecting both general and AF-specific QoL would be useful in routine practice, along with participation in peer support, which was empowering for the patients. Conclusions: The impact of comorbidities is poorly appreciated in the context of AF, with considerable variability in QoL that requires both generic and AF-specific assessment. Improvement in QoL should direct the appraisal, and reappraisal, of treatment decisions for patients with permanent AF.

AB - Aims: To establish the extent and impact of symptoms in patients with atrial fibrillation (AF), the importance of different aspects of quality of life (QoL), and how we should assess wellbeing. Methods: Focus groups of patients with symptomatic permanent AF in a trial of heart rate control; the RATE-AF trial randomised 160 patients aged ≥60 years with permanent AF and at least NYHA class II dyspnoea to either digoxin or beta-blockers. Patient and public representatives led the focus groups and performed all data acquisition and analysis, using thematic approaches to interpret patient views about QoL and its measurement. Results: Substantial impairment of health-related QoL was noted in 160 trial patients, with impact on all domains apart from mental health. Eight women and 11 men aged 61–87 years participated in the focus groups. Common themes were a lack of information from healthcare professionals about AF, a lack of focus on QoL in consultations, and a sense of frustration, isolation, and reduced confidence. There was marked variability in symptoms in individual patients, with some describing severe impact on activities of daily living, and profound interaction with comorbidities such as arthritis. Day-to-day variation in QoL and difficulty in attributing symptom burden to AF or other comorbidities led to challenges in questionnaire completion. Consensus was reached that collecting both general and AF-specific QoL would be useful in routine practice, along with participation in peer support, which was empowering for the patients. Conclusions: The impact of comorbidities is poorly appreciated in the context of AF, with considerable variability in QoL that requires both generic and AF-specific assessment. Improvement in QoL should direct the appraisal, and reappraisal, of treatment decisions for patients with permanent AF.

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Importance and assessment of quality of life in symptomatic permanent atrial fibrillation: Patient focus groups from the RATE-AF trial

Abstract

Bibliographical note

Keywords

ASJC Scopus subject areas

UN SDGs

Access to Document

Fingerprint

Projects

BHF Research Accelerator Award

Optimising rate-control therapy in older patients with AF - a training fellowship and pilot study focused on improving quality of life (RATE-AF)

Cite this