AFFIRMO WP4
Research type
Research Study
Full title
Atrial Fibrillation Integrated Approach in Frail, Multimorbid, and Polymedicated Older People (AFFIRMO): Needs Assessment and Indicators of Quality of Care (QPIs) Identification (WP4)
IRAS ID
303855
Contact name
Deirdre Lane
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
1 years, 9 months, 31 days
Research summary
Research summary:
Atrial fibrillation is a heart condition that causes an irregular fast beat of the heart, and is the most common heart rhythm disorder, which affects especially the elderly. There are common guidelines for the management of atrial fibrillation, but the care of patients varies within and between countries in Europe. Additionally, people with atrial fibrillation often do suffer of more than one long-term condition, with the most common concomitant conditions being hypertension, heart failure and chronic kidney disease. The presence of more than one long term condition takes the name of “multimorbidity”, and induces a higher risk of hospitalization and increase the risk of death. The burden of multimorbidity becomes more severe over time and can influence individuals’ health and quality of life, making its clinical management more difficult. Most of the healthcare systems in Europe adopt a single approach to multimorbidity, without taking into consideration the whole combination of conditions that affects the patient. This is often due to the lack of understanding of the patients’ needs from the healthcare team in charge of their care. To improve the management of multimorbidity then, there is the need to change the current approach and make the patient partners with the healthcare team in the management of their health.
The AFFIRMO project (Grant Agreement 899871) focuses on improving the management of atrial fibrillation in patients with multimorbidity, taking into account the different aspects of the individual’s health, including the presence of other long-term conditions, the use of different medications, the social background as well as the personal preferences of the patients.
Work Package 4 of the AFFIRMO project aims to assess the key needs of patients, caregivers, and health professionals for improving the management of multimorbidity that includes atrial fibrillation, and to find ways of improving patients care and self-management.Summary of results:
KEY FINDINGS
• We recruited 1,305 international participants (659 patients with atrial fibrillation
and multimorbidity, 201 caregivers, and 445 healthcare professionals) from five
EU countries (UK, Italy, Spain, Romania, Denmark) using an online survey to
obtain a list of needs, quality performance indicators, and outcomes relevant to
patients, their caregivers and healthcare providers.
• We used a modified Delphi process to determine the key needs (n=19), quality
performance indicators (n=8), and outcomes (n=13) relevant to patients, their
caregivers and healthcare providers.
• We interviewed 37 participants (20 patients and 17 caregivers) from the UK
and Italy, to explore the experience of patients with atrial fibrillation and multimorbidity, and their caregivers; finding that their health deeply affects their
quality of life, and that they face several barriers in accessing healthcare.
• Our findings have informed the AFFIRMO clinical trial, which aims to improve
the clinical and self-management of patients with atrial fibrillation and multimorbidity.
WHO CARRIED OUT THIS RESEARCH AND WHY?
This study was part of a European project, in which the University of Liverpool
collaborated with four other University’s in Europe: University of Padua (Italy),
University of Murcia (Spain), Carol Davila University of Medicine and Pharmacy
(Romania), and Aalborg University (Denmark). We also collaborated with the
Arrhythmia Alliance (UK) and Advice Pharma (Italy).
The AFFIRMO project received funding from the European Union’s Horizon 2020
research and innovation programme under Grant agreement No 899871.
BACKGROUND
Atrial fibrillation (AF) is an abnormality of the heart rhythm that affects 1-2% of the
European population and is the most common heart arrhythmia. Older people have a
higher incidence of AF compared to younger people, and their quality of life is further
affected by additional concomitant chronic conditions (multimorbidity) that may
develop with ageing (e.g., diabetes).
Clinical and self-management of multimorbidity is very challenging. Most European
countries still adopt a single disease approach, rather than providing care in a more
holistic way. The difficulties in managing AF, especially in the context of
Final Report Notification version 1.0, July 2024
multimorbidity, deeply affect the quality of life of both patients living with the condition
and their caregivers.
The AFFIRMO project (Grant Agreement 899871) aims to improve the management
of AF in the context of multimorbidity, with the focus on a holistic approach to optimise
clinical management of older patients with AF, considering the different aspects of the
individuals’ health, including multimorbidity, polypharmacy (the use of multiple
medications), personal preferences, and social context. The AFFIRMO sub-study
reported here aimed to identify the key needs, the quality of performance indicators
(QPIs), and the outcomes relevant to patients with AF and multimorbidity, their
caregivers, and healthcare professionals (HCPs) involved in their clinical
management.
WHAT DID WE DO?
We ran an international online survey open to patients with AF and multimorbidity,
their caregivers, and HCPs, that was distributed between May 2022 and January 2023
in five European countries: UK, Italy, Spain, Romania, and Denmark. We recruited
patients and caregivers through the participating institutions. A total of 1,305
participants were recruited in the online survey (659 patients, 201 caregivers, and 445
HCPs). We also conducted interviews and focus groups with patients and caregivers,
both in the UK and in Italy, to seek their experience of the AF and multimorbidity. For
the interviews, we recruited a total of 37 participants (20 patients, and 17 caregivers).
Finally, we reached consensus on the key needs, QPIs, and outcomes relevant to this
population conducting a series of meetings and voting (called a Delphi process), which
involved 21 participants that were international representatives of patients (n=8),
caregivers (n=3), and HCPs (n=10).
WHAT DID WE FIND?
From the online survey, we obtained an initial list of 27 needs, nine QPIs, and 17
outcomes. After the consensus meetings, we obtained a final list of 19 needs, eight
QPIs, and 13 outcomes. Key needs and QPIs included items such as ‘stroke
prevention’; ‘controlling heart failure symptoms’; ‘appropriate treatment to
reduce/avoid hospitalisation and adverse events’; ‘patient and caregiver
education/information’, etc. Outcome domains included ‘long-term consequences of
disease’; ‘complications of treatment’; and ‘patient-reported outcomes’, etc.
From the interviews with patients and caregivers, we observed that AF and
multimorbidity deeply affect the quality of life of both patients and their caregivers.
Most patients and caregivers reported a lack of information on the disease and
treatment options from HCPs, difficulties in managing drug interactions, difficulties in
accessing healthcare, and healthcare fragmentation. Additionally, the burden of
Final Report Notification version 1.0, July 2024
caregiving deeply affects caregivers’ personal and social life, with caregivers reporting
a lack of support from HCPs.
WHAT ARE THE STRENGTHS AND LIMITATIONS OF THE STUDY?
• We used a strong methodology (Delphi process) to reach consensus on the
key needs, QPIs, and outcomes, via the online survey and the consensus
meetings.
• We involved key stakeholders in the decision process (patients, caregivers,
and HCPs).
• We conducted interviews to seek the personal experience of AF and multimorbidity with patients and caregivers.
• Unfortunately, we had a poor uptake with the online survey from patients, caregivers, and HCPs from Denmark. Also, we had a poor uptake in the online
survey from caregivers in the UK.
• We had only a small group of caregivers (n=3) participating in the interviews in
the UK.
WHAT NEXT?
The findings of this study have informed the AFFIRMO clinical trial. This trial will test
an on-line platform to provide a holistic approach to improve patient management of
AF and multimorbidity. In addition, a toolkit has been developed based on data
collected by this study to support patient and caregiver empowerment and
engagement in the care process. The findings of our study will also be reported in
international scientific journals, and in national and international scientific and patient
conferences, to increase awareness of patients and caregivers’ needs among HCPs
that manage their health, such as cardiologists and geriatricians.REC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
21/YH/0307
Date of REC Opinion
17 Jan 2022
REC opinion
Further Information Favourable Opinion