Uncertainty and Variability - Insights from a multi-perspective qualitative study on Heart Failure with Preserved Ejection Fraction

Talk Code: 
D.15
Presenter: 
Emma Sowden
Co-authors: 
Muhammad Hossain,Carolyn Chew-Graham,Thomas Blakeman, Stephanie Tierney,Ian Wellwood, Francesca Rosa, Christi Deaton
Author institutions: 
University of Manchester, Keele University, University of Cambridge, University of Oxford

Problem

Approximately 26 million people worldwide are living with heart failure (HF) – a serious life-threatening disease for which the outlook is often poor. Primary care has a crucial role in the management of this patient population, yet the optimal structure of care remains unclear. About half of patients with HF have heart failure with preserved ejection fraction (HFpEF). HFpEF is more common in older adults with multimorbidity. Compared to HF with reduced ejection fraction (HFrEF), there is a limited evidence-base for management, making the need to establish models of care more pressing. This study aims to identify key barriers to the optimal care of patients with HFpEF.

Approach

This study formed part of the NIHR School for Primary Care Research funded programme of work aimed at Optimising management of patients with HFpEF (OPTIMISE HFpEF). A Patient Advisory Group and a multidisciplinary team of experts have been involved in the development and implementation of the study. The research adopted a qualitative multi-perspective approach in which findings across key stakeholder groups were triangulated using Framework analysis to identify key barriers to the optimal care for this patient population.

Findings

This study entailed 106 interviews and two focus groups with key stakeholders. Participants included 50 patients with diagnosed or suspected HFpEF, nine carers, and 73 clinicians (including 35 GPs, 8 Practices nurses, 14 HF Specialist nurses, six Cardiologists and ten other Health professionals). Limited understanding of the syndrome and associated roles and responsibilities were widespread across patients’ and primary care clinicians’ accounts, indicating an unmet educational need. Respondents described a precarious starting point associated with HFpEF in terms of lack of awareness, failure to diagnose, and a poor evidence-base, from which other problems appeared to stem. Some providers, particularly specialists, expressed concern that HFpEF patients may be missed as the system is attuned to identifying reduced ejection fraction, ignoring other parameters. GPs conveyed uncertainty about interpreting reports, with many relying on summaries or conclusions of variable quality. Patients’ descriptions of their journey to diagnosis contrasted with linear referral pathways of protocols and guidelines, conveying a convoluted, protracted series of hospital admissions or specialist appointments. The data suggest that amidst uncertainty and variability as to how HFpEF was identified and understood, and care organised, optimal management was problematic leading to unclear treatment, diminished possibilities of self-management and limited access to specialist care.

Consequences

Findings suggest that the current approach to the management of people with HFpEF in primary and secondary care may miss opportunities to optimise the care of this patient population owing to limited understanding of the condition. Findings are being used to inform consensus work leading to the development of an optimised programme of management in primary care for this patient group.

Submitted by: 
Emma Sowden
Funding acknowledgement: 
The study was funded by the National Institute for Health Research, School for Primary Care Research (NIHR SPCR). Grant reference number 384.