How can we optimise the management of people with Heart Failure with Preserved Ejection Fraction (HFpEF)? a qualitative study.

Conference:

SAPC ASM 2019 - Exeter

Talk Code:

6A.1

Presenter:

Carolyn Chew-Graham

Twitter:

@CizCG

Co-authors:

Muhammad Hossain, Emma Snowden, Ian Wellwood, Stephanie Tierney, Christi Deaton

Author institutions:

Keele University, University of Manchester, University of Cambridge, University of Oxford.

Problem

Heart failure (HF) is a long-term condition occurring when the heart becomes less efﬁcient at pumping blood to meet the body’s needs. There are an estimated 0.9 million people living with HF in the UK; and HF causes about 5% of all emergency hospital admissions. About half of patients with HF have preserved ejection fraction (HFpEF) where the heart is stiff; this is more common in older people with hypertension, obesity and diabetes. HFpEF may be difficult to recognise in primary care. No specific medications are effective in HFpEF, with management focusing on optimising long-term condition care. This study aims to improve understanding of patient and provider preferences and concerns to inform the development of a model of care for people with HFpEF.

Approach

A qualitative study involving semi-structured interviews and focus groups with people with HFpEF as well as healthcare professionals (HCPs) from primary and secondary care services across three regions in England. Interviews and focus groups were digitally recorded with consent and transcribed verbatim. Framework analysis was used to interpret data, supported by NVIVO software.

Findings

Thirty-three interviews with people with HFpEF, and interviews and 2 focus groups with 43 HCPs, including General Practitioners (GPs); Heart Failure Specialist Nurses; Practice Nurses; Cardiologists, Pharmacists, an Echocardiographer and a Commissioner. Interim analysis indicates that the ‘work’ necessary for the development of a shared understanding of HFpEF between patients and providers was challenging. The meaning of ‘HFpEF’ to patients was unclear, with few seeming to understand the nature of their condition. GPs and PNs expressed uncertainty about the term HFpEF, resulting in difficulty in considering and making the diagnosis. HCPs reported the use of euphemisms to name and explain the condition to patients, avoiding the term ‘heart failure’. This lack of a shared understanding of the condition possibly contributed to patients with misattributed symptoms having limited feelings of empowerment in terms of monitoring and self-management.HF specialist nurses emphasised ‘sense-making work’ as central to the optimal management of HF, and viewed this work as more demanding in the context of HFpEF where multimorbidity was typical. Problems with communication were reported between providers across the primary/secondary care interface and this miscommunication influenced relationships upon which optimal care was dependent. Findings suggest unclear lines of responsibility across multiple providers, influencing patients’ and providers’ experiences of communication and relationships within the healthcare system.

Consequences

Findings illustrate an interplay between understanding, communication and responsibility, resulting in substantial uncertainty and variability in both the perception of HFpEF and access to support, service provision, and care across multiple interfaces. These findings provide timely evidence to support the development of interventional research to improve the management of patients with HFpEF in primary care.

Submitted by:

Carolyn A. Chew-Graham

Funding acknowledgement:

This presentation will present independent research funded by the National Institute for Health Research, School for Primary Care Research (NIHR SPCR). Grant reference number 384. The views expressed are those of the author(s) and not necessarily those of the NIHR, the NHS or the Department of Health.