Title: Integrating Palliative Care and Heart Failure: a Realist Synthesis (PalliatHeartSynthesis)
Funder: Public Health Agency, NI

Abstract: 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 functional demands. People with an advanced stage of heart failure can become frequently unwell with poor quality of life despite advanced medical therapies. They would therefore benefit from the integration of palliative care. 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 life limiting illnesses, including heart failure. Palliative care can do much to alleviate suffering for people with heart failure as it focuses on adding to patient care by treating the whole person – their physical, psychosocial, and spiritual needs. Thus, improving quality of life for both the patient and their loved ones. _x000D_ _x000D_ However, poor integration of palliative care into the management of heart failure is an ongoing problem. 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). Hence, it remains unclear what brings about the best outcomes for patients and their informal carers._x000D_ _x000D_ To build a detailed understanding of which integrated palliative care and heart failure interventions may work best, 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?”. _x000D_ _x000D_ 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 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).

Lay abstract: Background_x000D_ Heart Failure (HF) is referred to internationally as a modern-day epidemic, with prevalence rates similar to the leading forms of cancer. At least 5% of those with advanced HF (defined as New York Heart Association (NYHA) class III and IV) in the United Kingdom (UK) are over 75 years old, rising to 22% in those = 85 years, with highly complex healthcare needs. This puts considerable burden on overstretched health service resources with an estimated 1–2% of the NHS budget spent on HF. Up to 70% of advanced HF costs relate to hospitalisation, with 80% of those hospitalised aged = 65 years. Patient burden is also considerable, involving debilitating emotional and physical symptoms which severely impact on quality of life (QoL) for patients and caregivers. _x000D_ _x000D_ Emerging evidence demonstrates improved QoL, reduced symptom burden, and health service costs when Integrated palliative care (PC) and HF interventions are implemented. Integrated PC aims to achieve continuity of care by integrating administrative, organisational, and clinical services that make up the patients care. However, integrated PC for advanced HF is not common practice. It is over a decade since the first national strategy for end of life care in England, 2008, closely followed by other nation specific strategies for Scotland, Northern Ireland and Wales, emphasising equity of PC irrespective of diagnosis. However, only 7% of people with advanced HF are placed on the primary care palliative register in the UK compared to 48% of those with advanced cancer._x000D_ _x000D_ Aim _x000D_ Understand how integrated PC and HF interventions may work in different healthcare settings (inpatient/outpatient), and for which groups of people (symptomatic and/or advanced HF)_x000D_ _x000D_ Objectives _x000D_ 1. Develop a programme theory of why, for whom and in what contexts desired outcomes occur_x000D_ 2 Use the programme theory to co-produce, with stakeholders (e.g. patient/carers, local, national, international content experts and multidisciplinary practitioners), recommendations to inform implementation of best practice and future research_x000D_ _x000D_ Methods _x000D_ A realist synthesis is the best approach to synthesising the evidence as successful implementation of integrated PC and HF depends on the context and people involved. The realist synthesis will follow Pawson’s five iterative stages: 1) locating existing theories; 2) searching for evidence; 3) article selection; 4) extracting and organising data; 5) synthesising the evidence and drawing conclusions. We will recruit a UK wide stakeholder group, including NHS Management, and healthcare professionals (HCPs) involved in the delivery of PC and HF, Policy and Community Groups, plus members of the public and patients, to advise and give us feedback throughout the project. RAMESES quality standards for conducting a realist synthesis, developed by one of the research team will be followed._x000D_ _x000D_ Timelines for delivery_x000D_ Eighteen months_x000D_ _x000D_ Anticipated impact and dissemination_x000D_ To enhance impact on practice, healthcare costs, and QoL for patients and families, we will collaborate closely with our stakeholder group to develop user friendly recommendations tailored to the needs of key audiences. Marie Curie, the British Heart Foundation, and NIHR will also help us disseminate through their well-established channels. Findings will help inform further research in the field of PC and HF for which additional funding will be sought once this synthesis is completed.

Research activity codes: 7.2 END OF LIFE CARE;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: CARDIOVASCULAR