Project objectives 

Hypothesis

Our hypothesis is that there are points in the pathways of patients with heart failure where unplanned admission could be avoided.

Aims:

1. To understand in more detail the pathways that lead to unplanned hospital admission for patients with heart failure
2. To identify within the patient pathways the opportunities to reduce or prevent an unplanned admission

Brief summary

Background

Unplanned hospital admissions are a problem for the NHS, they are expensive and can be distressing for patients and their families. In England heart failure (HF) is a common cause of unplanned hospital admissions. Despite existing interventions to prevent admissions in HF these have not made a significant impact.

Aims and objectives

The aims of this study were to understand in more detail pathways that lead to unplanned admissions for people with HF and to identify opportunities to reduce or prevent future admissions.

Methods

We adopted a multi-centre, longitudinal, qualitative design using an ethnographic approach including: non-participant observation, in-depth interviews with patients, carers and health professionals, patient/carer diaries and documentary analysis. The study was conducted in three contrasting geographical locations in England.

Our sample included 31 patients with severe or difficult to manage HF, 9 carers and 24 health professionals. Patients were observed for up to 11months on their individual journeys through healthcare. 

Verification of findings was achieved through regular research and PPI meetings where interpretations of data were discussed in depth.

Key Findings 

Findings indicated local variations in how care for people with HF was organised and delivered. Some localities provided services that were more conducive to admission avoidance. In one locality care for HF was well thought out and co-ordinated across service providers. Patients were confident about seeking help on exacerbation of symptoms and had good access to specialist HF teams across primary and secondary care. In contrast, in another locality patients experienced fragmented and chaotic services with little coherence and inequitable access to specialist services, such as HF specialist nurses.

Levels of HF awareness were very variable amongst patients and some GPs. Patients and carers wanted more detailed lifestyle advice and guidance on self-care, especially on diagnosis and discharge from hospital. 

Clinically, symptoms of HF were often misdiagnosed or ‘backgrounded’ leading to unplanned admissions. Improvements in the early detection of HF and diagnostic procedures were recommended together with a more holistic approach to care across health conditions and specialties. Disease focused approaches in primary care monitoring was not helpful for patients with HF and co-morbid conditions such as diabetes.

A number of patients experienced emotional distress precipitating unplanned admissions. Both patients and clinicians recommended improved emotional support and understanding for patients with HF to avoid anxiety related admissions. Support from community matrons and HF specialist nurses helped patients to stay out of hospital by addressing their overall needs as people living with chronic conditions.

Expected impact on the relevant field and conclusions

Findings suggest that improvements in diagnostic procedures, disclosure and ‘patient activation’ should help patients and clinicians in managing and treating HF. Whilst some patients will need to be admitted to hospital unexpectedly, our findings suggest there is scope to reduce those admissions precipitated by misdiagnoses, patient anxiety and lack of knowledge.

The expected impact of our conclusions is currently being evaluated as we draw together our findings for publication and dissemination. 

Plain English summary

Unplanned admissions to hospital are expensive and distressing for patients. Heart failure is a condition where the heart is unable to pump blood around the body as well as it once did. It is a common cause of unplanned admission to hospital. There are treatments and services in place to try and reduce unplanned admissions for heart failure. It is unclear why these do not work as well as hoped.

This study aims to find out why the treatments and services available are not helping to prevent unplanned admissions for heart failure.

The research will recruit patients with heart failure from GP practices. It will use a method called ethnography, where researchers closely observe what is happening to the people who are recruited to take part in the study. The researchers have regular contact with the participants and may accompany them, e.g. to outpatients, to observe what happens. The patients who take part in the study will also record their experiences using a written, tape recorded or ‘blog’ diary. We will interview some of the family or friends who care for the patients and also doctors, nurses and other health care professionals to find out where they think there are problems accessing or getting care.

As a result of this study we will have a detailed understanding of the way services run and how they impact on patients’ lives, of the views of patients and carers and their experiences of living with the condition. This will inform the NHS about how services could be delivered more effectively to help patients. It will also help researchers to develop and test new interventions to reduce avoidable admissions in people with heart failure.

We will seek ethics approval for the study. We have experience of conducting ethnographies, including two in heart care settings, and are aware of the ethical issues raised by using such methods. Many patients are happy to take part in research and enjoy the contact with the research team. The team includes GPs and researchers with experience in the methods and in heart conditions and unplanned admissions. We also have a service user group on unplanned admissions and we will invite them to collaborate with this study.

The majority of the costs are for the employment of research associates to undertake the work. Costs for travel to research sites, transcribing interviews, computers and advisory group expenses have also been included.

Dissemination

Public involvement

We recruited a panel of PPI participants to advise on the project. Participants were recruited in Bristol and Keele (six in total). The study team met with PPI participants on several occasions and fed back initial findings from the study. Two participants (one patient with HF and one carer) came to a one day workshop at which the study findings from all three sites were summarised and discussed. The PPI participants participated fully in the discussion, adding to the interpretation and meaning of findings. The PPI input was summarised at advisory group meetings.

A summary of the study findings has been prepared for participants with the input of two PPI representatives. This has been adapted and circulated at the three study sites. This will also form the basis of the dissemination to GP practices and staff who recruited and took part in the study.

We really valued the PPI input to this study; useful learning included actively involving PPI participants in the interpretation of qualitative data on an ‘equal’ footing with the co-applicant team. This was not originally planned but added to our learning form the data.

Impact

Two papers have been submitted for publication in peer reviewed medical journals and one more paper is about to be submitted. The papers contain recommendations for clinicians, managers and policy makers around the organisation of care for people with heart failure and the delivery of clinical care to individual patients. More papers are currently in the process of being drafted by members of the team and these will also contain recommendations for clinicians, managers and policy makers.

This project was funded by the National Institute for Health Research School for Primary Care Research (project number 115)

Department of Health Disclaimer

The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NIHR School for Primary Care Research, NIHR, NHS or the Department of Health.