Patient Experiences of the Clinical Pathway for Diagnosing Heart Failure in Primary Care

The problem

Heart failure is a common and important disease which causes troublesome symptoms and reduces life expectancy for patients. There are many treatments which improve quality of life, and survival, so making a diagnosis is vital. Guidelines suggest a simple diagnostic algorithm for patients presenting with symptoms suggestive of heart failure in primary care. However it is unclear what the process of heart failure diagnosis entails from the patient’s perspective. The symptoms can be non-specific and there is little known about the help-seeking behaviours of patients prior to having a formal diagnosis and the impact a ‘heart failure’ diagnosis can have on their everyday lives.

The approach

Invitation letters were sent to patients with a recent (<1 year) diagnosis of heart failure. Semi-structured interviews were carried out to explore the patient experience of the diagnostic pathway. Patients were asked to describe key points in their journey from the time they first noticed symptoms to when they received a formal diagnosis of heart failure. Interviews were recorded and transcribed verbatim. Data were analysed using the framework method.

Findings

Sixteen participants were interviewed. Participants entered the healthcare system through a number of different routes. The patient’s mode of presentation depended on their background knowledge of illness, previous experience of healthcare and existence of other diseases. Reasons for a delay in seeking help included putting symptoms such as breathlessness down to another condition, lack of physical fitness or a normal part of the aging process.Participants underwent diagnostic testing in primary and secondary care. Interactions with healthcare professionals, namely GPs, consultants and specialist nurses, were important in determining satisfaction with healthcare. Logistical frustrations such as cancelled, delayed or changed appointments added to patient burden. Multiple decisions were required along the pathway. Decisions where the patient was informed and involved led to better satisfaction with care than didactic decisions which sometimes resulted in conflict between the doctor and patient and led to poor satisfaction.The term ‘heart failure’ was unhelpful for participants who found it both frightening and confusing. The impact of a heart failure diagnosis depended on the presence of other conditions, which could cause more debilitating symptoms than heart failure itself. Patient adaptability - ability and willingness to adapt to new circumstances – determined the impact the diagnosis had on patients’ lives.

Consequences

A better understanding of the patient journey through the heart failure diagnostic pathway provides lessons for primary and secondary care to improve the patient experience. Greater public awareness of heart failure symptoms, timely investigation, shared decision making and adequate explanation of heart failure as a term are potential areas of service improvement.

Credits

• Clare J Taylor, University of Oxford, Oxford, UK
• Tom Marshall, University of Oxford, Oxford, UK
• FD Richard Hobbs, University Hospital Birmingham, Birmingham, UK
• Francisco Leyva-Leon
• Nicola Gale, University of Oxford, Oxford, UK