QUAL-HF version 1
Research type
Research Study
Full title
Should we screen for heart failure? A qualitative study to explore the acceptability of a potential new diagnostic pathway
IRAS ID
270109
Contact name
Clare Goyder
Contact email
Sponsor organisation
University of Oxford / Clinical Trials and Research Governance
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Research Summary
Heart failure (HF) is a very common medical problem that occurs when the heart is not able to function properly as a pump. Patients experience symptoms such as breathlessness, tiredness and ankle swelling. There are approximately 40 million people worldwide living with HF. Patients living with HF often have a very poor quality of life. Survival can be worse than for conditions such as breast and prostate cancer.
Diagnosing HF is very important. For a lot of patients, treatment can improve their quality of life, reduce hospital admissions and improve survival. However, recent research has shown that most patients who have HF are missed in primary care, even if they present to their GP with possible symptoms. Starting treatment for HF early, even before a patient has symptoms, can reduce later progression to more severe HF.
Recent research suggests that it might be possible to screen for HF using a blood test and that performs reasonably accurately. However, we want to explore patient’s attitudes to being screened for HF and to understand whether this screening would be an acceptable strategy to patients.We are therefore planning to perform an interview study. We aim to recruit between 15-25 patients who already have a diagnosis of HF to discuss their experiences and explore their attitudes to a potential screening programme.
Patients will be recruited through two routes, either through their GP practice or through local HF specialist nurses. They will be invited to participate in a telephone or online video interview which should last less than 1 hour.
The information gained from the interviews will be analysed and will together inform future research in this area.Summary of Results
Heart failure (HF) is a common medical problem that occurs when the heart is not able to pump blood effectively around the body. Both detecting and treating HF are very important. Medications can improve quality of life, reduce the need to go to hospital and improve survival. However, recent research has identified difficulties in accurately diagnosing HF in the community, even when people present with possible HF symptoms. Moreover, previous research has shown that starting treatment for HF early, even before symptoms develop, can reduce progression to more severe HF. The difficulties in diagnosing HF and the importance of early treatment have driven calls to suggest that screening for HF should be considered as this would ensure that people with HF are appropriately diagnosed and treated.This study aimed to explore the patient experience of HF diagnosis and to develop recommendations for clinical practice based on what could be learnt from these experiences. Furthermore, the study aimed to explore people's attitudes towards the potential introduction of HF screening. This study interviewed 24 people with HF in the Thames Valley region between January 2021 and July 2022.
Three main themes were developed from listening to people with HF describe their experience of HF diagnosis. Firstly, they described significant suffering and ‘liminality.’ The term ‘liminality’ has been used to describe being on both sides of a threshold or boundary and refers to a sense of being in-between different states. One participant said: ‘I just felt like it was basically the end of my life because if I couldn’t breathe anymore, I can’t be alive’. She was unwell but not diagnosed or not aware of the diagnosis: alive but not able to live or function normally. Secondly, participants described paradoxical reactions to the diagnostic moment. Although there was relief in finally getting a diagnosis and finally “knowing what was wrong,” many participants also described "despair." The main driver of this despair was poor communication at the time of diagnosis and many felt shocked by the term “heart failure.” The final theme focused on understanding and sense-making and how having the diagnosis carefully explained reduced the initial shock and despair. The main recommendation for practice focuses on the need to ensure that clinicians not only make the HF diagnosis but also that they communicate and explain it better as this facilitates an escape from liminality.
Four main themes were developed from listening to people with HF describe their attitude to the potential introduction of HF screening. Firstly ‘knowing’ that they had a diagnosis of HF was important to participants in its own right, not just because ‘knowing’ led them to do or act differently. This was equally important for participants who had the diagnosis of HF made incidentally who didn’t have any significant symptoms as well as those with more severe symptoms when they were diagnosed. Participants were pragmatic that knowing the diagnosis was beneficial and described this knowledge as a “pre-warning” or “yellow card” that encouraged them to lead healthier lifestyles. Secondly, participants were also able to identify risks of screening and shared concerns that this knowledge in someone without symptoms might threaten whether a person still viewed themselves as ‘healthy’ as it might potentially “introduce a worry” and that, in itself, might be harmful. Thirdly, participants were divided in their views regarding taking medications especially in those people who didn’t have any HF symptoms. Whilst some ‘embraced’ medications, others described a “resistance” to these and an irony that although taking medications were prescribed with the motivation to extend a person’s life, they made some participants feel that they were closer to dying. Participants described how medications were associated with an “intimation of mortality” and some participants said that taking medications made them feel “old.” The final theme related to the logistics and linguistics of potential HF screening and the main finding here was the suggestion that the terminology of HF needs careful consideration in a screening context.
The results of this study will be published and widely disseminated. It is hoped that clinicians will learn from these patient experiences so that the care of future people with a new diagnosis of HF will be improved. In future, the diagnosis of HF should not be associated with relief or despair because there should not be this degree of suffering in a liminal existence; or poor communication, at the thresholds of diagnosis. Upscaling and increased funding for HF specialist nurses is a clinical priority, especially given the essential role they play in communication and patient education. Although participants are supportive of potential screening and early detection of HF overall, they identified that individual reactions to risk and the treatment of risk, vary hugely and testing is not free from potential harms. There might be a potential role for targeted HF screening in selected patients with risk factors in the future; but any proposed programme would need to be designed to very carefully balance the potential risks and benefits of this approach. It would need to be underpinned by evidence that the associated costs would be justified by both improved long-term outcomes and positive future patient experiences.
The authors wish to thank the participants who generously shared their experiences through participating in the interviews and the Heart Disease Patient Advisory Group at the Nuffield Department of Primary Care Health Sciences, University of Oxford who have guided and supported this project from the outset.
REC name
East of Scotland Research Ethics Service REC 1
REC reference
20/ES/0068
Date of REC Opinion
19 Aug 2020
REC opinion
Further Information Favourable Opinion