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Understanding the management of heart failure with preserved ejection fraction: a qualitative multiperspective study

The Optimise HFpEF teams in Cambridge, Keele and Manchester interviewed 50 patients, 9 carers and 73 healthcare providers to determine their perspectives on the diagnosis and management of HFpEF, and what is and isn’t happening in practice.  The teams confirmed that diagnosis and treatment of HFpEF is not part of everyday practice in General Practice, and that the condition was not widely visible, understood or diagnosed within Primary Care.  Three main tensions were identified:  difficult and often delayed diagnosis; varying perceptions of HFpEF and lack of shared understanding; and variability in services available for patients with HFpEF.  These problems hinder efforts to improve management of patients with HFpEF.  You can access the full paper here:  https://doi.org/10.3399/bjgp20X713477  You can also view a brief podcast with Emma Sowden (first author of the paper) with The Naked Scientists team here:  https://www.thenakedscientists.com/podcasts/short/hfpef-heart-failure-type-underserved

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HFpEF Study Newsletter

The latest newsletter from 20 August 2019

Thank you for your continued support of the OPTIMISE-HFpEF study. This is to update you on progress and and to make you aware of a potential research opportunity that you may be interested in.

The OPTIMISE-HFpEF study is approximately half way completed, many of you have returned for six month visits and some have even concluded their one year follow-up!  We are truly grateful for your participation which has helped produce the following reports/reviews:

A vignette about the study appeared on BBC Look East and BBC World News!  This has helped highlight HFpEF to a wider audience.  If you missed it, it can still be accessed here:
https://www.youtube.com/watch?v=cyctWhQb58w  

A systematic review (a report that brings together the results of all studies that have been carried out around the world that report on outcomes for HFpEF patients enrolled in disease management programmes). The aim of the systematic review is to provide a comprehensive and unbiased summary of the research in this area which will soon appear in the European Society of Cardiology Heart Failure Journal.

Coming soon…

A report on the difficulty of diagnosing HFpEF, which many of you have
highlighted is a problem, and the results of some of the interviews we have conducted with people who have HFpEF and the people who look after them (healthcare professionals and friends and family).  We also hope to produce individualised activity summaries based on the data from the watches you have worn for us; I know many of you are keen to understand how active you are compared to public health recommendations. The work from all of these components will be pulled together as we enter the last phase of this study, the consensus work.  The consensus work will involve synthesising everything we have learned, trying to understand it and then using this information to make recommendations for changes in the healthcare system.

Lastly, many of you who have come back for follow-up have asked about treatments for HFpEF.  As you know, OPTIMISE-HFpEF is not testing a new treatment or making recommendations for treatment, rather we are trying to understand more about what it is like to have HFpEF and how we can make changes to the whole system of care.

However, our colleagues at the Radcliffe Department of Medicine, University of Oxford are looking at how a diabetes drug called empagliflozin, which is currently used to treat patients with diabetes, might help improve heart function and exercise ability in people with heart failure, WITH or WITHOUT diabetes. Information about the study, called EMPA-VISION, is enclosed with this letter.  We wanted to make you aware of this study, you are under no obligation to take part and your decision will not affect your participation in the OPTIMISE-HFpEF study. If you are interested, would like to know more or have any questions, please fill in the reply slip and post it to the research team in Oxford in the envelope provided, who would be delighted to hear from you (talking to the researchers about the study does not mean you are committing to participate in the study).

We look forward to further collaboration with you and, again, thank you for your support!

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Qualitative Study and Protocol Paper

The qualitative study has finished recruitment after interviewing 135 participants (54 patients, 8 carers and 73 healthcare providers). Thank you to everyone who participated as your experiences, insights and ideas are invaluable. The data are being analysed, and Emma Sowden (University of Manchester) is leading the analysis and has written a draft of the first paper. We will keep you informed about the papers from this very rich dataset.

In an update from this original post on 23/09/19, the protocol paper (Optimising Management of Patients with Heart Failure with Preserved Ejection Fraction in Primary Care (OPTIMISE-HFpEF): Rationale and Protocol for a Multi-Method Study) has now been published in BJGP Open, and can be read via this link:

https://bjgpopen.org/content/3/4/bjgpopen19X101675.long

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Study process

The longitudinal cohort study started recruitment of patients with HFpEF in June 2018.  See the videos for more information on what a study visit entails.

We are working with primary care practices and HF services in the East of England, the Thames Valley and the West Midlands.

The qualitative work package is ongoing in Cambridge, Keele and Manchester.  Thanks to patients, carers and health care providers for sharing their views and perspectives with us.