This blog was created to keep healthcare professionals, researchers, methodologists, and patients up to date with the latest primary care research. For more information about the Research Institute, visit our website;

Thursday, 1 October 2015

What is it like to be diagnosed with gout?

The Patient Experiences of Gout study began in January 2013. The main aim of the study was to create a new section about gout on the website

Although there is a lot of information about gout available on the internet, much of this is inaccurate and not based on robust research evidence, reinforcing myths and misconceptions about gout. This is particularly the case in terms of the relationship between gout and diet, which is commonly exaggerated and misrepresented on the internet

Our new gout website resource summarises key issues about gout, drawing on relevant research evidence and using video and/or audio clips of people talking about their own experiences of living with gout. We hope that these will be of interest to others diagnosed with gout, as well as their family, friends and healthcare professionals. 

The new gout resource also provides more information that is specific to women with gout. Often gout is incorrectly believed to be a male condition, and we know from our research interviews that women feel there is a lack of public awareness about women and gout. Women who have been diagnosed with gout also told us that the photographs and images used in gout information booklets and on websites were predominantly of men's feet etc. By including interview clips of women with gout, as well as a section on gender and gout, we hope to begin redressing this balance.

Our first journal article (based on the interview data we collected) has just been published, and discusses people's experiences of being diagnosed with gout. Gout diagnosis is a topic that has been written about extensively in academic journals before, but the focus has generally been on what methods are being used and/or should be used to diagnose patients, and how accurate these methods are. Our article differs from this approach because it focuses on diagnosis from the point of view of patients. It considers: what people thought when they first experienced symptoms; when and why they decided to seek medical advice; the process of getting a diagnosis and any issues around this; how people felt about being diagnosed with gout; and what actions they took immediately after being diagnosed. The article discusses the implications of these findings for understanding delays in diagnosis and self-management, and suggests that a more targeted approach to information provision is needed. 

Articles on other aspects of the study data are under review with journals, and will be published in due course. 

Useful links:

This is a summary of independent research funded by the National Institute for Health Research School for Primary Care Research (NIHR SPCR), Grant Reference Number 136. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

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