Gout Nation Report 2014

Transcription

1 Gout Nation Report 2014

2 Contents Contents Introduction... 4 Foreword... 4 Executive Summary... 5 Calls to Action... 7 The study Main findings The impact of gout Risk factors Lifestyle changes Onset and diagnosis Medical consultations Medication and treatment Information sources Managing and treating gout About Arthritis Care What we do How you can help Arthritis Care Credits Advisory panel Thank you and credits Introduction Management Arthritis Care Credits Contents Contents Contents Contents Contents 2 Gout Nation Report 2014

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4 Foreword Contents Arthritis Care exists to support and represent people with all kinds of arthritis, and as such it s a vital part of our role to speak up when people with arthritis don t get the treatment or attention they deserve. That is why we have commissioned this research and report; to highlight the growing problem of gout, the impact it s having on the individual and the extent to which it is being trivialised and inadequately managed. When we think of gout we often picture an overweight, red faced and wealthy older man, overindulging in port and rich foods and caricatured by satirical magazines of the past. In 2014 this picture couldn t be further from the truth. The number of people with gout and the number of people being diagnosed every year is increasing significantly. What was a condition affecting the rich is now increasingly a disease of poverty. Although predominantly a condition that affects older men, gout also affects women and is often diagnosed in younger, working age people. The myths and misconceptions we have about gout are affecting the way we see it and treat it. Having gout is far from funny. One of the main things that struck me from the survey findings was just how painful and debilitating a gout attack can be; and the extent to which it impacts on people s day to day and working lives. The survey showed that despite the extreme pain and distress the condition can cause, sadly many people don t take gout seriously. Without effective treatment there are significant long-term risks to health; such as joint damage, cardiovascular disease and kidney disease. The outdated ideas we have about gout, and what it means for the people who have it, need to change. We need policy makers and health professionals to take the condition more seriously; to implement effective, practical strategies to address how it is treated and managed in primary care. We need to support people with gout to understand more about their condition and to work with their GP to manage it. Everyone with gout needs access to information that will enable them to make fully informed choices about their treatment. And finally, we must work together to change the public perception of gout. Anyone who has ever had it will tell you it s far from a laughing matter. This report speaks for the hundreds of thousands of people in the UK with gout and they are asking you to listen and act, and to treat it with the serious attention it deserves. Judi Rhys Chief Executive Contents Management Arthritis Care Credits Contents Contents Contents Introduction 4 Gout Nation Report 2014

5 Executive Summary Contents The results of the 2014 Gout Nation survey show clearly that gout is having a significant impact on the lives of people with the condition. An attack can be extremely painful and disabling and this has an impact on day to day life and activity. This can cause concerns about future mobility and independence. Four fifths struggle with some kind of day-to-day activity when gout is at its worst; most commonly those related to mobility. The number of people with gout, and the number of people being diagnosed with it each year is increasing. We are living longer, and ageing is one of the risk factors for developing gout. Also, raised uric acid levels are a feature of metabolic syndrome, and the number of people with this is rising. What was once a condition affecting the rich, is now increasingly a disease affecting people with lower socio-economic status. One in 40 people in the UK have gout. Since 1997 there has been a 30% increase in the number of people diagnosed with gout, and the numbers are increasing by 1.5% every year. Being overweight is the biggest lifestyle risk factor for gout, and losing weight is one of the most effective lifestyle changes. However, few people are taking steps to lose weight. Instead, people with gout most commonly change the foods they eat and reduce their alcohol intake. 84% of survey respondents have been classed as overweight or obese. 25% have lost weight to reduce their symptoms or slow the progress of gout. Gout is mainly diagnosed in people aged 30 and older. However, it is not just an older people s condition, and it is likely that younger people will increasingly be affected by it. This is likely to impact on work lives, incomes and productivity. Around one in seven people say theirs or their partner s work life is affected by gout. There is a lack of awareness of the impact of gout and its causes and treatments, among both the public and health professionals. As well as being an acutely painful condition, gout can also cause long-term health problems if it is not effectively treated, such as joint damage, cardiovascular disease and kidney disease. However, some people, including health professionals, do not consider gout to be an important health problem and find it amusing. Almost a quarter say their health professional does not consider gout to be an important health problem. Two fifths say their family and friends find it humorous, and 8% say the same of their health professional. An acute attack was the worst pain I ever experienced, easily. Toothache, appendicitis, no comparison. When the pain is alive, it is completely incapacitating. When it s more subdued, it makes everything unpleasant and life a chore. MM, male, 61 Contents Management Arthritis Care Credits Contents Contents Contents Introduction 5 Gout Nation Report 2014

6 Contents Most people are diagnosed with gout by their GP after one visit. However, a significant minority have three or more visits to their GP before the condition is diagnosed. A significant minority are also diagnosing themselves from information on the Internet. One in 10 people diagnose themselves from information on the Internet; these people are more likely to be aged under 50. Not everyone gets the information they need from their GP to help them understand their condition and to make decisions about treatment. Half of people have discussed how gout develops and the different treatments with their GP, and one fifth feel they do not get enough information about medicines to make informed decisions. There are two main aspects to treating gout: treating the symptoms of an acute attack and ongoing treatment to prevent further attacks. However, despite effective treatments, many people with gout are sub-optimally managed and continue to have gout attacks. Two thirds of those who have been prescribed medications by a health professional take medicines to lower uric acid levels and/or medicines to manage the symptoms of an acute attack. Among those taking allopurinol, only 6% are taking 400mg or more - the average dose that is usually needed to get rid of urate crystals and prevent further attacks. Information and education for people with gout is an important factor in improving treatment and management. Many people with gout seek information outside of the GP surgery, which has a number of benefits, including an increase in confidence and feelings of control. Two thirds of people have used another source of information about gout, apart from their health professional; most commonly general online searching and specific websites. When I used to ring in sick with it, it was like Hmm, gout, really? like they didn t believe you had it, or that it could be that painful to keep you off work. There s this impression that it s funny; an old fashioned illness. My daughter says it s like a thing of the past; you learn about it at school. JM, female, 60 Contents Management Arthritis Care Credits Contents Contents Contents Introduction 6 Gout Nation Report 2014

7 Calls to Action Contents The swelling was huge and the pain was unbearable. I even considered on more than one occasion smashing a 5 kilo weight into the foot to try take away the pain, or at least move it to another place on the foot. Introduction SG, male, 44 In the UK around one in 40 people have gout. 1 In the last two decades there has been a significant increase in the number of people diagnosed with the condition, and the number of people affected is growing every year. This has many implications for future health services. The condition is characterised by acute episodes followed by periods of no symptoms, but when someone has a gout attack it can cause severe and debilitating pain and disability. The impact on day to day life, mobility and work can be significant. Gout does not only have an immediate impact; if it is insufficiently treated it can also affect long-term health, increasing the risk of permanent joint damage and cardiovascular disease. Gout is both treatable and curable, in that medication can keep the condition at bay, provided is it prescribed and taken effectively. However, the evidence suggests that gout is being undertreated. 2,3 Without improved awareness and knowledge among health professionals and policy makers, and without better treatment strategies and shared decision making between doctors and patients, gout will continue to be inadequately treated. To help people with gout get the right treatment they must be involved in decision making, they must be offered appropriate individualised treatment and they must be supported to make long-term sustainable lifestyle changes. Arthritis Care will campaign to ensure that policy makers and health professionals give the condition the attention it deserves, and that people with gout get the treatment they need. Contents Management Arthritis Care Credits Contents Contents Contents 7 Gout Nation Report 2014

8 Health policy-makers Contents What we need health policy-makers to do See gout as a serious disease and a long-term health issue. Commission research to understand the impact and cost of poor gout management on the individual and on health services. Call for NICE Guidance for the overall treatment and management of gout. Include the management of gout in future versions of the Quality and Outcomes Framework (QoF). There is a lack of recognition by many GPs and other health professionals as to the impact of gout on a patient s quality of life. This stems in large part from a misapprehension that in most patients gout attacks are completely self-limiting acute episodes. It is now clear that gout is an established chronic crystal deposition disease even at the time of the first attack, and that prolonged urate-lowering therapy will be essential to prevent recurrent acute attacks, joint damage and long-term disability. Professor George Nuki Contents Management Arthritis Care Credits Contents Contents Contents Introduction 8 Gout Nation Report 2014

9 Healthcare professionals Contents What we need healthcare professionals to do Develop simple and practical tools to improve the day to day treatment and management of gout in primary and secondary care. Recognize gout as a serious long-term condition that can be life limiting and disabling, and treat it as such. Expand the framework for GPs with a special interest in musculoskeletal conditions, and support them to improve the standard of care delivered by other GPs Develop management and treatment tools which will enable GPs to implement any new NICE guidance on gout. As part of routine care, help people with gout to fully understand their treatment choices and signpost them to Arthritis Care as a source of information and support. Implement shared decision making, and provide every patient with gout with full information on the nature of gout, its risk factors, its prognosis, and the available treatment options, and the opportunity to develop a care plan in partnership with their health professional. Contents Management Arthritis Care Credits Contents Contents Contents Introduction 9 Gout Nation Report 2014

10 People with gout Contents What we encourage people with gout to do Take control of your condition. There are lots of ways to help yourself, such as making lifestyle and diet changes, which can help you to manage your condition and to reduce the frequency of recurrent acute attacks of gout. Understand your treatment options, including the availability of urate-lowering drugs which can dissolve away the crystals that cause gout, and act positively about your pain. Work with your GP to decide what treatment is best for you. Ask your GP for a care plan. A care plan helps you and your GP to manage your gout. It s written specifically for you, based on your needs. Ask us for help. Arthritis Care is here to give you the information and support you need to manage your gout. When an attack comes on it s very sharp and sudden and I feel very down and utterly useless. I live alone so when I have an attack, any freedom I have is immediately ended. I have to get around the house on my knees. Just making myself something to eat hurts like hell as the fingers in my hand are affected too. I can t do anything but lie on the sofa all day. PC, male, 52 Contents Management Arthritis Care Credits Contents Contents Contents Introduction 10 Gout Nation Report 2014

11 The study Contents Overview The UK has the highest rate of gout in Europe, with around one in 40 people affected by the condition. 4 Since 1997 there has been a 30% increase in the number of people diagnosed with gout, and the numbers are increasing by 1.5% every year. 5 The growing number of people affected by the condition has implications for individuals, health professionals and health services, both now and in the future. The increase in prevalence and incidence of gout prompted Arthritis Care to commission YouGov to undertake a survey, to understand more about gout and its impact on people with the condition. The research was conducted from the perspective of individuals with gout and explores the experiences of people with the condition only. It is not intended to be an in-depth medical study. Contents Introduction The objectives of the survey were to investigate: The impact of gout on lifestyle, work, finances, emotional health and wellbeing. What people with gout understand about the risk factors for developing gout and how to prevent it, and their propensity to take such measures. The consultations and support provided by GPs and specialists. Different types of medication and how there are used. The sources of information available to people with gout, and the impact of these. Management Arthritis Care Credits Contents Contents Contents 11 Gout Nation Report 2014

12 Methodology The survey was conducted by YouGov using an existing panel of 425,000 adults in the UK. From this panel, 1,259 people with gout were surveyed between 21st and 30th May The survey was conducted online and was composed of 59 questions exploring the impact of gout, diagnosis and treatment, interaction with health professionals, risk factors and information needs. The demographics of the survey sample were broadly representative by age and gender of people in the UK with gout, and therefore the data was not weighted. The survey sample was UK wide. Age and gender breakdown of survey respondents Age and Gender Survey Respondents Percentage of Total Men Age % Age % Age % Women Age % Age % Age % Total % Survey respondents Respondents were asked a number of questions about themselves and their gout: 95% of people had been formally diagnosed as having gout. 24% of respondents also had osteoarthritis. 14% of respondents first developed symptoms in the last two years, 17% developed symptoms between three and five years ago and 62% more than five years ago. 84% have been classed as overweight or obese, the remainder as normal weight or underweight. Contents Contents Contents Contents Contents Management Arthritis Care Credits Introduction 12 Gout Nation Report 2014

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14 The main findings The impact of gout Gout is a type of arthritis. It causes swollen and painful joints, particularly at the base of the big toe. Other joints, such as those in the hands, wrists and ankles can also be affected. Gout is the most common inflammatory arthritis, affecting between 1% and 2% of men in western countries. 6 It causes pain, disability and a poorer quality of life. 7 More men than women develop gout, and it becomes much more common as people get older. 8 Gout is caused by a build-up of sodium urate crystals in the body, which comes from uric acid, and which collect around the joints causing inflammation. If gout is severe or frequent and is not effectively treated, the joints can become permanently damaged, which causes chronic daily pain and disability. The pain is so intense it s hard to describe - and yet it s concentrated in a really small area. How can you explain that yes, it s only in one toe, but the pain is absolutely unbearable. So bad, you can t put on a shoe or sock - can t even bear to think about trying. So painful, you have to fashion a cage to keep your foot in when you go to bed so that nothing, not your partner, not even a duvet or sheet can touch it. No point making plans to go out - it s too painful to walk, and you can t get your shoes on anyway. JM, female, 60 Gout can also lead to other serious health complications, such as kidney stones and chronic kidney disease. Raised uric acid levels are also a feature of metabolic syndrome. 9 Metabolic syndrome is a group of risk factors for cardiovascular disease, which also includes raised cholesterol, high blood pressure, obesity and raised fasting blood sugar. The symptoms of gout include an extremely painful and swollen joint and hot, red and shiny skin over the joint. The pain from gout can be very severe, and some people find just walking difficult. Even the weight of bed sheets on a joint can hurt. In the long-term gout can be disfiguring, with permanent swollen and deformed joints. Having gout can be the same severity of pain as childbirth, when the baby is just emerging, but it goes on for hours on end. In the past, some people who had their own private physician would instruct them to cut off the affected fingers or toes at the height of their attack to stop the pain. A gout attack comes on very quickly over just a few hours and the joint becomes swollen and often red; the slightest touch or vibration is almost unbearable. Some cultures, including the Maori, think that gout is a punishment from God; a form of retribution. Professor Michael Doherty Contents Introduction Management Arthritis Care Credits 14 Gout Nation Report 2014

15 Summary The impact of gout can be significant and wide ranging. Most people have simple everyday activities affected and around a third have to give up or reduce walking and exercise during an attack. A gout attack can also affect work lives, social activities, sleep and emotional 1 Most people (83%) struggle with some kind of day-today activity when gout is at its worst. This includes simple tasks such as putting on shoes and getting up and down the stairs. 67% wellbeing. Although gout is more common in older people, younger people with the condition tend to be more affected by the symptoms and worry more about the impact on their future health. 61% 56% 48% 43% 41% 31% 29% 28% 27% 26% Q When your gout is at its worst, do you struggle with any of the following? 20% 16% 12% 12% 17% Contents Introduction 2 The activities most commonly affected by gout are those related to mobility; for example, 36% have to give up or reduce walking. Putting on your usual shoes 36% Getting around 28% Going up and down stairs 14% Going to the shops Gardening Carrying out daily tasks Getting out of bed 8% 8% 8% 6% 4% Getting dressed 1% Getting out of a chair 55% Making, or keeping, social arrangements Working Making meals Intimacy (hugging, sexual relations etc) Putting the kettle on Looking after children/grandchildren None of the above Q Have you had to give up, or reduce, any of the following as a result of your gout? 45% of respondents said they have had to give up at least one thing Management Arthritis Care Walking Exercise Socialising Meeting with friends Travelling/holidays Intimacy (hugging, sexual relations etc) Crafts and hobbies Other activity Using technology I haven t had to give up or reduce anything 3 20% of survey respondents said that they had had an attack of gout in the past four weeks. Among those individuals, 50% rated their pain as poor or very poor. Credits 4 Those people who had a gout attack in the previous four weeks reported significantly more pain and a greater degree of disease severity than those who had not had a recent attack. For example, on a scale of 1 to 10 where 1 is no pain and 10 is severe pain, people with a recent gout attack reported a score of 6.4 compared to 2.9 in those people who have not had a recent attack. 15 Gout Nation Report 2014

16 During an attack of gout around one in seven people under the age of 65 say theirs or their partners work life has been affected by gout; with 4% giving up work and 3% retiring early. One third of respondents face additional costs because of gout, most commonly paying for treatment, medicines and diet changes. A significant minority of people have concerns about future aspects of their day-to-day life. A third are concerned or very concerned about their mobility and a quarter about coping with the practical aspects of everyday life. Q To what extent, if at all, are you concerned for the future about the following in relation to your gout? Not at all concerned Not very concerned Fairly concerned Very concerned Overall concern Gout affects mood and how confident people feel about being able to cope in the future. One third say they feel depressed during an attack; this rises to half in people aged between 25 and % Maintaining mobility Coping with practical aspects of day to day life 25% among 25-49s 10% 6% 6% The younger people are, the more concerned about the future they tend to be. My job is quite active and I would say I walk more than most so gout did affect my work. I m self-employed and there were times when I just couldn t face getting out of bed in the morning. Of course when you re self-employed if you re not working, you re not earning and each time I had a gout attack I probably lost a couple of day s pay. CB, male, 47 34% 33% 31% 25% 20% 17% 35% 38% 23% 32% 43% Maintaining independence 16% My emotional health 31% among 25-49s 3% 4% 13% 8% 31% 52% 12% 27% 59% My financial situation/security Contents Introduction Management Arthritis Care Credits 16 Gout Nation Report 2014

17 Risk Factors My gout started when I put on a lot of weight. I retired and stopped exercising, started sitting around, ate too much, drank too much and put on about 12 stone. I reached 24 stone and had two heart attacks. I had a gastric operation and after that I started losing weight. As I lost weight I found it easier to exercise, and the more exercise I did the more weight I lost. As my weight has gone down my GP has reduced the amount of allopurinol I take. I walk, ride my bike and go to the gym three or four times a week - I have got my self-esteem back. I haven t had a gout attack since MK, male, 66 Gout is caused by a build-up of sodium urate crystals in the body. Uric acid is made in the body every day and most of it is passed out in urine. However, in people with gout the uric acid builds up and occasionally reaches high enough levels for urate crystals to form. About two-thirds of the uric acid in the body comes from the breakdown of substances called purines that are present in cells. The other third comes from the breakdown of purines in some foods. Uric acid levels can build up for many reasons. The biggest risk factors for developing gout are being male and getting older. For some people, gout develops because their kidneys are not functioning well enough to excrete enough uric acid. For other people lifestyle factors may be the cause. Being overweight or obese, drinking too much alcohol or drinks that are high in sugar, and eating too many foods high in purines can all increase the risk of developing gout. Taking certain medicines and having some health conditions such as diabetes, hypertension and cardiovascular disease, are also linked to developing gout. For example, almost all medicines used to treat hypertension also increase uric acid levels by reducing its excretion through the kidneys. There is a genetic aspect to developing gout and the condition sometimes runs in families. If a close family member has the condition (a parent or sibling), an individual is more likely to develop gout than someone without a strong family history of gout. For most people who develop gout, there is a mix of different types of risk factors involved; for example a family history of gout which predisposes someone to develop it, plus an environmental factor that triggers the condition, such as being overweight. Whereas it is true that gout occurs most often in older men, it is becoming increasingly common in younger men and in women after the menopause, and studies show that it is now more frequent in men from lower income groups. Professor George Nuki Contents Introduction Management Arthritis Care Credits 17 Gout Nation Report 2014

18 Summary There are many factors which can increase an individual s risk of developing gout. Most people know at least one risk factor and many are able to identify some of the most important lifestyle risks, such as being overweight and drinking too much alcohol Most people (89%) know of at least one risk factor for gout. The three risk factors most frequently acknowledged by people with gout are a diet rich in certain foods, drinking alcohol and being overweight. These three factors were most commonly identified whether respondents were talking generally about risk factors or those risk factors that applied to themselves. 33% 32% Drinking alcohol Diet rich in certain foods 25% Being overweight Not drinking enough water * Asked to men only 23% 21% Genetics /inherited from previous generations 18% 18%* Older age Being a man 13% Taking certain drugs (such as water tablets or drugs for blood pressure) 9% 8% Men are more likely to know that being male is a risk factor for gout. The doctor told me it was gout and that it was related to my kidney disease. I had the same impression as everyone else - that gout is caused by drinking lots of red wine and things like that; I had no idea. LN, female, 66 Not being active enough Having osteoarthritis 6% Kidney disease Having other conditions, such as psoriasis or blood disorders Smoking 79% of respondents identified at least one risk factor for themselves 4% 4% 3% 2% Being exposed to cold, damp living conditions Low levels of vitamin C 1% 1% 0% Younger people are more likely to say that lifestyle factors are the cause; older people are more likely to say that age and medicines for treating other conditions are a factor. Those people who think their gout is diet related are most likely to blame red meat. Q Which, if any, of the following do you think may be factors that put anyone at risk of developing gout? Too much lead in the body Not drinking coffee Vitamin A supplements (retinol) 5% Other 17% Don t know 4% None of these Contents Introduction Management Arthritis Care Credits 18 Gout Nation Report 2014

19 Lifestyle changes Getting gout played a part in the changes I made to my lifestyle. My GP gave me a list of foods to avoid and I started exercising and eating more healthily. I have changed my diet, I eat lots more fruit and veg, drink more fluids and generally watch what I eat. The stress levels at work are still the same but I mentally manage them a lot better - I don t want another flare up as the pain is something I don t want to ever to re-experience. I have also embarked on a serious fitness program and now run half marathons. SG, male, 44 One way of preventing a gout attack is to make lifestyle changes which may reduce the levels of uric acid in the body. 10 Being overweight can increase the amount of uric acid in the body, so losing weight can help to reduce it. Crash dieting and high protein or low carbohydrate diets can increase uric acid levels, so any weight loss should be gradual. 11 High protein diets and foods that contain high amounts of purines (such as liver, kidneys, yeast extract and seafood) can also raise uric acid levels, so limiting the amount of these foods that are eaten may help. 12 Drinking alcohol sensibly, by staying within the recommended weekly guidelines, can help to prevent gout. Beer and spirits are more important than wine in this respect, so it may be more effective to drink less of these. 13 Drinking plenty of fluids (around 8 glasses per day unless contraindicated), encourages more uric acid to be passed out of the body, and therefore helps to prevent urate crystals from forming in the joints. 14 Other lifestyle changes which may help to keep uric acid levels down include: Limiting the amount of sugary drinks and snacks consumed. 15 Taking regular exercise. 16 I control my diet by excluding most if not all foods with above medium levels of purine. This leads to a sometimes repetitive and boring diet. I don t eat much meat or touch things like anchovies or offal. I don t drink beer anymore - I just have the odd glass of wine. I drink plenty of water, I tried cherry juice, which seemed to work but it s expensive so I had to stop that. I know what can trigger the gout and I stay away from it, it s just not worth it. AT, male, 47 Contents Introduction Management Arthritis Care Credits 19 Gout Nation Report 2014

20 Summary Making lifestyle changes can help to prevent a gout attack, and most people with the condition take some action to alleviate their symptoms or slow the development of gout. Most people find these changes helpful The actions that people with gout think may help to alleviate the symptoms or slow the progress of the condition are closely related to their views on risk factors. Around half thought that reviewing diet, drinking more water, reducing alcohol intake and losing weight could help. Reviewing your diet Drinking more water Reducing your alcohol intake Losing weight Increasing/changing the exercise you do Stopping smoking Other I don t think anything can help Don t know 8% 7% 11% 20% 27% 49% 82% 54% 53% 59% Q Which, if any, of the following actions do you think can help anyone to alleviate the symptoms or slow the progress of gout? Three quarters have taken some action to alleviate their symptoms or slow the development of gout, most often by changing eating and drinking habits. The lifestyle change chosen by the most people was drinking more water (43%). Those under the age of 49 are more likely to make lifestyle changes than those over the age of 65. Men are also more likely to make lifestyle changes than women. 84% of survey respondents have been classed as overweight or obese. 25% of respondents have lost weight to reduce their symptoms or slow the progress of gout. Started drinking more water Changed your diet Reduced your alcohol intake Lost weight Increased/changed the exercise you do Avoided alcohol altogether Stopped smoking Other No actions undertaken to alleviate gout Lifestyle changes were thought to be helpful in reducing the overall impact of gout by most people. The two most effective lifestyle changes were changes to diet and increasing or changing activity. Those who change their diet are more likely to eat less of certain foods than to eat more of others. The most common change was to eat less red meat. Around half of people with gout who increased the amount they ate of certain foods chose to consume more foods rich in vitamin C, cherries or cherry juice. 9% 9% 9% 16% 25% 25% 32% 38% 43% Q Have you undertaken any of the following actions yourself with the intention of alleviating the symptoms, or slowing the progress of gout? Contents Introduction Management Arthritis Care Credits 20 Gout Nation Report 2014

21 Onset and diagnosis It started with pain in my foot and I didn t believe it was gout, so I looked for other reasons; a sporting injury or ill-fitting shoes. I didn t do anything about it for a while, I left it for a couple of months. I ended up going to A and E one night because it was so painful, and they said straightaway that it was gout. SG, male, 44 Gout attacks come and go. People who develop gout usually have an initial gout attack, which may be followed by further attacks in the future. Around two thirds of people have another gout attack in the year following the first one. 17 Some people will only ever have one attack of gout. Each attack usually comes on quickly and lasts for up to 10 days, after which time the symptoms die down. It can be months or years between each attack. An attack of gout is usually triggered by something; the main triggers include recent stress or illness, an injury to the joint or dehydration. Gout is usually diagnosed based on the symptoms and an examination of the joint. However, a GP or specialist may also arrange an X-ray of the joint, take a blood test to measure uric acid levels or examine the synovial fluid within the joint to confirm the diagnosis. Patients and doctors tend to focus on the acute attacks, but if you have gout many of your joints are already stuffed with crystals. The crystals form hard, slowly expanding little lumps in the joint cartilage and bone ( tophi ), causing pressure damage to both. Every day that goes by you slowly deposit more and more crystals. If you don t do anything to address this the gout attacks are likely to increase in frequency, and you may also find you re in pain every day due to the irreversible joint damage, caused by chronic gout. Professor Michael Doherty Contents Introduction Management Arthritis Care Credits 21 Gout Nation Report 2014

22 Summary Pain and swelling in the joint at the base of the big toe are the most commonly reported symptoms of gout. The majority of people are diagnosed with gout by their GP after one visit Most people (88%) notice sudden, rapidly worsening pain and swelling in a joint when a gout attack starts. This is most likely to develop in the joint at the base of the big toe. Around a quarter of people get gout in their mid-foot or ankle. Other joints commonly affected are knees, wrists, finger joints and elbows. More than three quarters of people find out from their GP that their symptoms are caused by gout. One in 10 people diagnose themselves from information on the Internet; these people are more likely to be aged under 50. Most people make just one visit to a doctor before being diagnosed with gout, but a significant minority (14%) make three or more visits. People aged over 65 are more likely to be diagnosed at their first visit to their GP. 78% My GP told me 88% Sudden onset of very painful, swolen joint A specialist doctor (other than a GP) told me 23% Persistent joint pain and stiffness 12% 10% 6% 6% I diagnosed myself through the internet Q What were the symptoms you first noticed? I found out from other people 4% Hard lumps under the skin One or more family members had the condition already 7% Misshapen joints 2% I read about it or heard about it in the media 4% Other Q How did you know that the symptoms you were experiencing were caused by gout? 4% I diagnosed myself in some other way Contents Introduction Management Arthritis Care Credits 22 Gout Nation Report 2014

23 Medical consultations You see the smirky, mildly amused looks on people s faces when you tell them you have gout, because after all, it s only red faced, over indulgent country squire types who get it, right? JM, female, 60 The large numbers of people with gout, plus the ready availability of effective treatment, means that gout is usually treated and managed in primary care. 18 If the gout is severe or occurs frequently, a rheumatologist may be involved in managing the condition. Other health professionals, such as a nurse practitioner, podiatrist and occupational therapist may also be involved. People who have infrequent attacks of gout may choose only to have treatment to deal with these as they happen. However, when gout attacks become frequent or severe, longer term treatment is likely to be needed. When gout persists it becomes a chronic (long-term) condition. Gout used to be a disease of the rich, caused by overindulgence - rich foods, alcohol and obesity. It was portrayed as a disease that affected fat men with red faces, who were hopping up and down with the pain of it; hence it was seen as funny. Now it s more a disease of poorer people. Professor Michael Doherty Contents Introduction Management Arthritis Care Credits 23 Gout Nation Report 2014

24 Summary Most people with gout are treated by their GP. A significant minority wait until the pain of gout is severe before seeking help and one in five people feel they don t have enough information to make an informed decision about treatment. A significant minority also say that other people, including medical professionals, don t take their condition seriously or that they find it humorous The vast majority (93%) of people talk to their GP about their gout. Just under one fifth talk to a hospital specialist. Two fifths say that they would only visit their GP when the pain from their gout is often unbearable and frequently prevents them from doing everyday activities. When talking to their GP, roughly half discuss how gout develops and the medicines that treat gout. Almost three quarters of people feel involved enough in their care. However, one fifth feel they do not get enough information about medicines to make an informed decision about treatment. Two thirds feel they have enough time with their GP to talk about their gout, but around one in ten are dissatisfied. Most people (73%) do not have a care plan for managing and treating their gout. Around half of people who have discussed gout with their family and friends have had unhelpful reactions. This is more likely to happen to younger people. Almost a quarter say their health professional does not take gout seriously, and 8% say their health professional finds it humorous or has suggested that developing the condition is their own fault. Two fifths say family and friends find it humorous. I am happy with the amount of my own involvement in my treatment I have been given enough information to make informed decisions about treating my attacks of gout I have been given enough information to make informed decisions about long-term drug therapy to reduce my uric acid levels The benefits and drawbacks of medications offered are fully explained to me I would like to be given more information about other areas of my life that may affect my gout (e.g. exercise, alcohol, diet) Strongly disagree Medical professionals I am offered a choice of a wide range of medication Family and friends Disagree Respondents were almost equally divided on whether the NHS gives gout the attention it deserves or not. 18% 22% 8% 1% 5% 4% 8% 7% 6% 8% 11% Agree 14% 14% 15% 18% 41% 28% 30% 46% Strongly agree 14% 44% 35% 36% 9% 13% 5% 70% 15% 18% 26% 20% 18% Overall agree They have not considered gout to be an important health problem They found the condition humorous They made me feel guilty / suggested gout is my fault None of these 48% 37% 50% 53% 64% 72% Q To what extent do you agree, or disagree, with the following statements in relation to your GP? Q Thinking of any contact you have had with health professionals (doctors, nurses, pharmacists etc), have you experienced any of the following? Q Thinking of when you have discussed gout with family or friends have you experienced any of the following? Contents Introduction Management Arthritis Care Credits 24 Gout Nation Report 2014

25 Medication and treatment Although gout is seen relatively often in general practice, it s a condition that may not be getting the attention it deserves. Awareness of up to date management strategies is relatively low, and although excellent specialist guidance exists, it rarely finds its way into the hands of GPs for a whole host of reasons, including pressure of time and workload. What GPs need are simple practical measures that will enable patients to be treated with optimal drug therapy, such as including the target serum urate on the blood results that GPs receive. Dr Elspeth Wise, GP Although gout flares up and then goes down again, it will not get better without treatment. There are two main aspects to treating gout: treating the symptoms of an acute attack to reduce pain, swelling and disability; and ongoing treatment to prevent further attacks, by reducing the level of uric acid in the blood and getting rid of urate crystals. Treatment for a gout attack includes anti-inflammatory medicines, steroids and colchicine to reduce pain and swelling. Many people also use self-help techniques during an attack, such as applying ice packs and elevating the affected limb. Urate lowering medicines, such as allopurinol, are prescribed to lower uric acid levels and prevent further attacks. Studies have shown that 400mg of allopurinol is currently the average dose needed to achieve a therapeutic target of <360 μmol/l uric acid; a uric acid level low enough to prevent further attacks. 19 Many patients are being undertreated or inappropriately treated. In some, who need treatment with a urate-lowering drug, allopurinol is not prescribed, or it is not taken regularly by patients. In many patients where it has been prescribed, it is given in too low a dose to lower the serum urate below the level for crystal formation and dissolution in the body. Professor George Nuki Gout is one of the few types of arthritis where treatment can prevent damage to joints in the future. With urate lowering medicines, the body can be completely cleared of urate crystals and therefore gout can effectively be cured. However, this medication must be taken long-term, usually for life, and despite effective treatments many people with gout are sub-optimally managed. 20 Research suggests that only one third to one half of all people with gout ever receive urate lowering medicines, and of these, many are taking a dose that is insufficient to effect a cure. 21 Research suggests that there are a number of barriers to effective management. People with gout may have a lack of knowledge and understanding of the condition and its treatment, plus most people with gout are male and may be more reluctant to seek treatment than women. 22 Health professionals may manage gout as an acute rather than a long-term condition, and may have an insufficient understanding of effective treatments and guidelines. 23 Contents Introduction Management Arthritis Care Credits 25 Gout Nation Report 2014

26 Summary Most people take medicines to treat and prevent gout and some also undertake self-help measures to reduce their symptoms. Most people with gout are taking less than the recommended average therapeutic dose of allopurinol Four out of five people take prescribed medication for their gout. Self-help treatments such as non-prescription medicines and ice packs are used by around one in every seven people with gout. Roughly equal proportions (two thirds) take medicines to lower uric acid levels and medicines to manage the symptoms of an acute attack. Q Which of the following have you been prescribed by a doctor or health professional for your gout? Q How effective do you find the prescribed medicine to lower uric acid levels? Very effective Fairly effective Roughly 90% of those who take medicines to treat or prevent a gout attack find them fairly or very effective. More than half of respondents who have taken either prescription or non-prescription medications for their gout take non-steroidal anti-inflammatory medicines during an attack. Among gout sufferers who have been prescribed medicine to lower uric acid levels, 87% take allopurinol. Those being treated with allopurinol are most likely to take 300mg per day, however almost one third take less than this. Only 6% take 400mg or more. Not very effective 64% Medicine to lower uric acid levels 6% Neither / Don't know 62% Medicine to treat acute attacks of gout Q How much allopurinol do you take per day? Not effective at all How much allopurinol per day? When I feel an attack I take Naproxen til the pain becomes manageable - usually two or three days. I believe there are preventative treatments, but I am not being prescribed any. BC, male, 65 2% Under 100mg 100mg 150mg-200mg 300mg 400mg-600mg 700mg or more Don t know 61% 30% 4% 4% Don t know 2% 10% 1% 5% 19% 25% I take colchicine for the pain. I have to start taking it quickly, as soon as I feel the pain start or it doesn t work. In the end my GP prescribed allopurinol to take. I started on 100mg and then went up to 300mg a day, but have now dropped back down to 200mgs and that controls it pretty well. My GP does regular blood tests to make sure I m taking the right amount, and I know I ll probably have to take it forever to stop the gout coming back. LN, female, 66 38% Contents Introduction Management Arthritis Care Credits 26 Gout Nation Report 2014

27 Information sources Access to high quality information is an important aspect of managing any heath condition, and of making informed decisions about treatment. Gout is no exception and research has shown that information and education for people with gout is an important factor in improving treatment and management. 24 There is a wide range of information sources available, offering factual information about treatment choices, self-help advice and support. My GP has been really good, he has given me lots of information and suggested a couple of web sites to look at. When I go on the Internet I know how to search, I know what to look for and what to believe. SG, male, 44 Adherence to prescribed treatment can be improved by providing patients with better information about gout and its treatment, including information about the risk of flares after initiation of urate-lowering drug therapy; and by regular follow up by a health professional. Professor George Nuki Contents Introduction Management Arthritis Care Credits 27 Gout Nation Report 2014

28 Summary Most people look for other sources of information about gout, usually online, as well as speaking to their GP or health professional. Access to information about managing gout has a number of benefits, including an increase in confidence and feelings of control Two thirds of people have used another source of information about gout, apart from their health professional; most commonly general online searching and specific websites. Almost a third of people go to a specific health web site; primarily NHS Choices. Non-professional advice and information has a wide range of benefits, including increasing confidence and sense of control, coping with lifestyle changes and interacting with health professionals. Younger people are more likely to find information beneficial. 48% Search engines (e.g. Google) 37% It has helped me cope with my gout in non-medical ways (e.g. changing my diet, reviewing alcohol intake etc) 29% Specific websites 30% It has made me feel more confident about making informed decisions 17% Newspapers/ magazine articles 24% It has made me feel better able to discuss my options with doctors/specialists 13% Friends or family At one point I did go trawling the Internet for information about it. You have to be careful though, picking the sensible information out and avoiding the scaremongering stuff. MB, female, 66 23% It has made me feel more in control of my treatment choices 12% Leaflets in the doctor s surgery 21% It has helped me better explain to other people what I am going through 5% Specialist helplines e.g. Arthritis Care 11% It has made me feel less alone Q Which, if any, of the following other sources of information have you ever used to learn more about gout or its treatment? 3% Programmes on the radio or TV It has led to me changing the treatment I am given 2% Printed information from a charity Other effect 3% Other Don t know 5% Don t know/ can t remember Q Which, if any, of the following effects has this information had? 5% 3% 4% 25% It has not had any effect 27% No other sources used Contents Introduction Management Arthritis Care Credits 28 Gout Nation Report 2014

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30 Managing and treating gout When suffering an attack, it feels as if someone is rubbing handfuls of red-hot needles into the big toe joint and the ball of my foot. Obviously walking is painful but I wear comfortable shoes or sandals and hobble slowly. It s not life threatening, but it hurts. JB, male, 65 Gout is a type of arthritis where swelling and severe pain develops in joints, especially at the base of the big toe. It affects approximately 2-4 in 100 adults, most commonly men aged over 30 years of age. Gout less commonly affects women. What causes it? Our bodies produce a substance called uric acid which, if too much builds up, can form crystals of sodium urate. Gout is caused when urate crystals form in and around the body s joints, causing episodes of inflammation and pain, but also eventually possible irreversible joint damage. Uric acid builds up either because too much is being produced by the body, or because not enough is being passed out in urine. Some diseases can increase your likelihood of developing gout, including kidney disease, heart disease and psoriasis. According to recent research, genes may also play a part in increasing your risk of developing gout through inheriting kidneys that are inefficient at eliminating uric acid. How will it affect me? Gout usually affects the big toes. It can affect other joints such as ankles, knees, hands, wrists or elbows, especially in people who get gout when they are older. A joint will start to ache, then swell up and become red, hot, stiff and extremely painful. The joint may look as if it has a boil on it, or the skin can become shiny and peeling. You might also get a temperature and feel very tired. An attack of gout can last from 1-10 days, then die down, doing no permanent damage to the joint. There can be months or years between attacks. However, if you get lots of attacks, you can develop more permanent arthritis in the joint, which can damage it (chronic gout). Management Contents Introduction Arthritis Care Credits Contents Contents Contents 30 Gout Nation Report 2014

31 How is gout treated? There are two main aims with gout treatment; to reduce the symptoms during a gout attack and to get rid of the crystals to prevent further attacks developing. Non-steroidal anti-inflammatory drugs (NSAIDs) and colchicine can help to control pain and inflammation during a gout attack. If the gout attack is severe, you may also be prescribed steroids. Urate lowering medicines, such as allopurinol, prevent uric acid from building up and can therefore prevent future gout attacks. These medicines need to be taken for a long time, usually for life. Febuxostat is a new medicine that you can take if you cannot take allopurinol. What can I do to help myself? You can help to reduce symptoms during an attack by: placing an ice-pack (or pack of frozen peas), wrapped in a cloth, on the sore joint for 30 minutes, several times a day using a frame over your foot to keep bedclothes off, to relieve pain at night. Leading a healthy lifestyle can also help to prevent further gout attacks. This includes: losing weight gradually if you re overweight - this can help reduce the amount of uric acid in your blood reducing the amount of alcohol you drink - dehydration can trigger gout and alcohol, especially beer, can make a gout attack more likely drinking plenty of fluid - between six to eight glasses a day. This can stop uric acid forming into crystals cutting down on foods which contain substances call purines - such as liver, oily fish (herring, mackerel, sardines, fish roe, anchovies), beer and yeast and yeast extracts (like Marmite). I get an attack every month to six weeks. The gout stops me going out, I worry about driving, especially if the gout is in my right foot, because that s the one I use for the brake. If it s bad I don t go out at all. Once I couldn t go out for a week; I keep a stock of food in the house so that I can eat when it s bad and I can t get out. BC, male, 65 Management Contents Introduction Arthritis Care Credits Contents Contents Contents 31 Gout Nation Report 2014

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33 About Arthritis Care Arthritis Care is here for all people with all forms of arthritis. We represent people with arthritis and involve them in developing and delivering our services. What we do We provide clear and accurate information about arthritis. Our helplines team offers practical, confidential support backed up by a wealth of useful publications. We run a range of self-management and personal development programmes, giving people the confidence and skills to manage their arthritis and dramatically improve their quality of life. We put people with arthritis in touch with each other through our network of over 170 branches and groups. We also have offices throughout the UK s nations. We campaign for greater awareness of the needs of everyone with arthritis, improved services and an end to discrimination. We work closely with health professionals and other arthritis organisations in the UK and internationally. Arthritis Care Contents Introduction Management Credits Contents Contents Contents 33 Gout Nation Report 2014

34 How you can help Arthritis Care We are the UK s largest charity working with and for people who have arthritis. People with arthritis are at the heart of our work - they form our membership, are involved in all of our activities and direct what we do. We care because we want to support people through their pain and we actively campaign for better polices to help people with arthritis get more out of life. Even though we are the largest charity working with and for people with arthritis, we don t receive any direct funding from the UK Government. It means fundraising is vital to continue our work. We rely heavily on donations from individuals, grants, trusts and our corporate partners. It ensures we can provide leaflets, courses and our helplines free to anyone who needs them. Please consider helping in one of the following ways to ensure our support continues. Making a donation - any donation is gratefully received no matter what size. 20 could help support the cost of a contact to our helpline. Set up a regular donation - Paying through a direct debit is simple and cost effective. If you donated 8 a month, over the course of one year you could contribute to someone attending a selfmanagement course. Leave a Legacy - leaving a gift in your will enables the work of Arthritis Care to be available for future generations and costs you nothing today. Take part in one of our events - we run marathons, host tea parties, climb mountains and amble around the countryside. Why not get a group together and help raise funds by taking part? Support us through your organisation. Whatever the size of your company or the level of commitment you can give, you can work with us to raise the voice of people with arthritis in the UK. There are 10 million people with arthritis in the UK. Arthritis Care is committed to supporting many more people with arthritis. With your support we can help to reach out to all those who need our care and continue to empower people with arthritis across the UK. Please visit org.uk or telephone the Fundraising Office on to make your donation today. Arthritis Care Contents Introduction Management Credits Contents Contents Contents 34 Gout Nation Report 2014

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36 Credits Advisory panel Arthritis Care would also like to thank members of the advisory panel for their guidance and comments: Professor Michael Doherty Professor of Rheumatology, University of Nottingham Professor Philip Conaghan Professor of Musculoskeletal Medicine at the University of Leeds and Medical Adviser to Arthritis Care Professor Christian Mallen NIHR Research Professor in General Practice, Keele University Professor George Nuki Emeritus Professor of Rheumatology, University of Edinburgh Dr Edward Roddy Clinical Senior Lecturer in Rheumatology and Honorary Consultant Rheumatologist, Keele University Dr Elspeth Wise GP, Washington, Tyne and Wear Credits Contents Introduction Management Arthritis Care Contents Contents 36 Gout Nation Report 2014

37 Thank you and credits Arthritis Care would like to thank all of the people with gout who took part in the YouGov survey. Particular thanks go to those people who kindly gave their time, and willingly shared their experiences, to provide the quotes used within the report. Jane Lyons Project Lead Sarah Smith (HealthSmith Consulting Ltd) Author Making Sense Design Designer Published October 2014 Arthritis Care 2014 Arthritis Care Floor 4, Linen Court 10 East Road London N1 6AD Tel: Registered Charity Nos: , SC Registered office: Floor 4, Linen Court 10 East Road London N1 6AD Contents Contents Credits Contents Introduction Management Arthritis Care 37 Gout Nation Report 2014

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39 1 Kuo C, Grainge M, Mallen C et al (2014). Rising burden of gout in the UK but continuing suboptimal management: a nationwide population study. Ann Rheum Dis [Online] doi: /annrheumdis Available from: ard.bmj.com/content/early/2014/01/03/annrheumdis full [Accessed: 13 August 2014] 2 Roddy E, Zhang W, Doherty M. Concordance of the management of chronic gout in a UK primary-care population with the EULAR gout recommendations. Ann Rheum Dis 2007;66: Silvera F, Andres M, Carmona L et al. Multinational evidence based recommendations for the diagnosis and management of gout: integrating systematic literature review and expert opinion of a broad panel of rheumatologists in the 3e initiative. Ann Rheum Dis 2014;73: Kuo C, Grainge M, Mallen C et al (2014). Rising burden of gout in the UK but continuing suboptimal management: a nationwide population study. Ann Rheum Dis [Online] doi: /annrheumdis Available from: ard.bmj.com/content/early/2014/01/03/annrheumdis full [Accessed: 13 August 2014] 5 ibid 6 Silvera F, Andres M, Carmona L et al. Multinational evidence based recommendations for the diagnosis and management of gout: integrating systematic literature review and expert opinion of a broad panel of rheumatologists in the 3e initiative. Ann Rheum Dis 2014;73: ibid 8 Clinical Knowledge Summaries. Gout. accessed 15 August Doherty M. New insights into the epidemiology of gout. Rheumatology (2009) 48 (suppl 2): ii2-ii8. 10 Silvera F, Andres M, Carmona L et al. Multinational evidence based recommendations for the diagnosis and management of gout: integrating systematic literature review and expert opinion of a broad panel of rheumatologists in the 3e initiative. Ann Rheum Dis 2014;73: Jordan K, Cameron J, Snaith M et al. British Society for Rheumatology and British Health Professionals in Rheumatology Guideline for the Management of Gout. Rheumatology ibid 13 ibid 14 ibid 15 Silvera F, Andres M, Carmona L et al. Multinational evidence based recommendations for the diagnosis and management of gout: integrating systematic literature review and expert opinion of a broad panel of rheumatologists in the 3e initiative. Ann Rheum Dis 2014;73: ibid 17 Clinical Knowledge Summaries. Gout. accessed 15 August Rees F, Jenkins W, Doherty M. Patients with gout adhere to curative treatment if informed appropriately: proof of concept observational study. Ann Rheu Dis 2013;72: ibid 20 Silvera F, Andres M, Carmona L et al. Multinational evidence based recommendations for the diagnosis and management of gout: integrating systematic literature review and expert opinion of a broad panel of rheumatologists in the 3e initiative. Ann Rheum Dis 2014;73: Spencer K, Carr A, Doherty M. Patient and provider barriers to effective management of gout in general practice: a qualitative study. Ann Rheum Dis 2012;71: ibid Contents Introduction Management Arthritis Care Credits Contents Contents Contents 23 ibid 24 Rees F, Jenkins W, Doherty M. Patients with gout adhere to curative treatment if informed appropriately: proof of concept observational study. Ann Rheu Dis 2013;72: Gout Nation Report 2014

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