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We are a team of researchers from the School of Nursing and Midwifery, Queen’s University Belfast, Nuffield Department of Primary Care Health Sciences, University of Oxford, along with Patient and Public Involvement from the British Heart Foundation London heart failure group. We are all passionate about improving the quality of life of people living with heart failure and their loved ones.
Heart failure is an illness that mostly affects older people (those over the age of 65), whereby the heart is not able to pump blood sufficiently around the body to meet its needs. People with advanced stages of heart failure can experience frequent and distressing symptoms, negatively impacting their quality of life despite the best medical therapies. These patients would therefore benefit from having palliative care integrated into their everyday heart failure management. Palliative care has traditionally been associated with the care of patients with advanced cancer, but its benefits are increasingly being recognised and used in other chronic or long-term life limiting illnesses, including heart failure. Palliative care can do much to alleviate suffering for people with heart failure as it focuses on adding treatment options that address the physical, psychosocial, and spiritual needs of patients. Thus, improving quality of life for both the patient and their loved ones.
However, integration of palliative care into the management of heart failure remains sparse and problematic. For example, only 7% of people with advanced heart failure are placed on the primary care palliative register in the UK, compared to 48% of those with advanced cancer. Although there is evidence for improved outcomes when palliative care is delivered along with active heart failure management, the available research has reported very different types of care in different settings (e.g. inpatient, outpatient), delivered by different health care professionals (e.g. cardiologists, heart failure nurses, GPs), using different delivery methods (e.g. face-to-face, telemedicine), and involving different components (e.g. symptom management, advance care planning). In summary we know that integrating palliative care for patients with advanced stages of heart failure can benefit them and their carers. But it remains unclear what brings about the best outcomes for patients and their informal carers and this is what this research study will address.
We are going to build a detailed understanding of which palliative care and heart failure interventions may work best when provided together, in which contexts, for which patients, we will undertake a particular method of literature review called realist synthesis. This is a type of literature review that looks at all types of literature to identify “‘what works, for whom, and in what circumstances?”. We will recruit a stakeholder group (including healthcare providers and heart failure patients) to advise and give us feedback throughout the review.
Our findings will be used to provide recommendations on how palliative care and heart failure can be integrated to maximise the potential for widespread implementation, reduce healthcare costs, and improve quality of life for patients and families. We will work closely with our stakeholder group to make sure the findings make sense to them and co-produce a ‘user guide’ that provides practical recommendations for healthcare providers, along with user friendly summaries for the public and patients. With help from our stakeholder group, we will get these out to key audiences (e.g. providers, the public and patients).
This project is funded by the National Institute for Health Research (NIHR) HS&DR (NIHR131800). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.
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