New online gout resource launched
Our goals are to improve awareness of how painful gout can be and how it should be treated, and to dispel some of the myths about it.”
Friends, family and health professionals do not always understand just how painful gout can be, according to people with the condition who took part in a study carried out by Keele University and funded by the National Institute for Health Research (NIHR).
Harry (78) took part in the study and said gout felt like “having your toes sawn off with a hacksaw without anaesthetic”; Kate (65) described it as worse than childbirth; John (57) felt like he would rather tear his fingernails out than have the pain of gout.
Gout has been hitting the headlines this year, with the BBC reporting ‘soaring’ rates in the UK (16 January 2014). Gout now affects 1 in 40 UK adults. It can affect men of any age, whereas women are more likely to develop gout after the menopause.
Widespread myths about the causes of gout meant that people often made unnecessary, and sometimes unhealthy, changes to their diets. Many people found that information on the internet was conflicting or confusing. “I just get the impression that if I were to follow all the advice that’s in all the articles that I've read, I wouldn't eat or drink anything ever again”, says Ivor (69), an accountant.
Some women and younger people felt uncomfortable or embarrassed about being diagnosed with a condition that many people think only affects older men. “You can’t find a lot of information on women with gout”, says Sam (41). “I was thinking I must be some sort of freak because no other women I know have got it, so I kind of don’t end up talking about it anymore much to people”.
Researchers travelled around England, Scotland and Wales to interview 43 people with gout. In collaboration with colleagues at the University of Oxford, these video and audio interviews have been made into a new online resource about gout, which will be launched on Wednesday 14th May 2014.
“We know from our research that people with gout often feel they don’t have enough information, and that some existing information on the internet is misleading or inaccurate. The new website section aims to address this by providing accurate and up-to-date information that people can trust,” explains Consultant Rheumatologist, Dr Edward Roddy.
“Gout can be an extremely painful condition but there are widespread misconceptions about it. We hope that this new resource will be useful for members of the public as well as health professionals. Our goals are to improve awareness of how painful gout can be and how it should be treated, and to dispel some of the myths about it.”
Researchers hope that the website section on www.healthtalkonline.org will lead to more effective management of the condition and better quality of life for people with gout. Features of the website include:
• Video and audio clips of people talking about their own experiences of living with gout including how they felt about being diagnosed, and the choices they made about treatment.
• Sections of ‘practical tips’ and advice from people with gout.
• Video clips of doctors explaining various aspects of gout, including its causes, why it most commonly affects the big toe joint, and how it should be treated.
• Messages for health professionals from people with gout.
• Information about treatment options and current evidence about gout and diet.
• Information about women and younger people with gout.
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 NIHR SPCR is hosted at the University of Oxford and is a partnership between the Universities of Birmingham, Bristol, Keele, Manchester, Nottingham, Oxford, Southampton and University College London. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.
Notes for editors
Launch of new online gout resource
The new gout resource can be found on the Healthtalkonline.org website at http://healthtalkonline.org/peoples-experiences/bones-joints/gout from Wednesday 14th May 2014.
More about gout
Gout is an intensely painful form of arthritis that affects 1 in 40 adults in the UK. It can affect men of any age, whereas women are more likely to develop gout after the menopause. 7% of older men and 2-3% of older women have gout. Attacks usually happen suddenly and cause severe pain in the joints – often the big toe joint.
Media contact
Chris Stone, Press Officer, Keele University. Tel: 01782 733375 Email: c.w.stone@keele.ac.uk
Healthtalkonline.org
Healthtalkonline.org is produced by DIPEx (registered charity No 1087019) in partnership with the
Health Experiences Research Group at Oxford University. The site provides information on a range of illnesses and other health-related issues though real life experiences shared on video, audio and in text format. Thousands of people have shared their experiences on film to help others understand what to expect from health conditions such as breast cancer or arthritis including issues such as treatment, changes to daily life and support.
National Institute for Health Research (NIHR)
The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research. Since its establishment in April 2006, the NIHR has transformed research in the NHS. It has increased the volume of applied health research for the benefit of patients and the public, driven faster translation of basic science discoveries into tangible benefits for patients and the economy, and developed and supported the people who conduct and contribute to applied health research. The NIHR plays a key role in the Government’s strategy for economic growth, attracting investment by the life-sciences industries through its world-class infrastructure for health research. Together, the NIHR people, programmes, centres of excellence and systems represent the most integrated health research system in the world. For further information, visit the NIHR website (www.nihr.ac.uk).