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Abstract
Objectives To explore patient and provider illness perceptions and barriers to effective management of gout in general practice.
Design and setting A qualitative study involving semistructured face-to-face interviews with patients and health professionals from 25 Nottinghamshire general practices and one central National Health Service hospital.
Participants Twenty gout sufferers and 18 health professionals (six general practitioners, five hospital physicians, seven practice nurses).
Results A number of key themes emerged suggesting that several factors impact on patients' access to recommended treatments. The main barriers were patient experiences and lay beliefs of their condition which affected seeking advice and adherence to treatment. There was universal lack of knowledge and understanding of the causes and consequences of gout and that it can be treated effectively by lifestyle change and use of urate lowering therapy (ULT). All participants associated gout with negative stereotypical images portrayed in Victorian cartoons. Many viewed it as self-inflicted or part of ageing and only focused on managing acute attacks rather than treating the underlying cause. The main provider barriers that emerged related to health professionals' lack of knowledge of gout and management guidelines, reflected in the suboptimal information they gave patients and their reluctance to offer ULT as a ‘curative’ long-term management strategy.
Conclusion There are widespread misconceptions and lack of knowledge among both patients and health professionals concerning the nature of gout and its recommended management, which leads to suboptimal care of the most common inflammatory joint disease and the only one for which we have ‘curative’ treatment.
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Introduction
The prevalence of gout has increased in recent years and currently it affects 1.4% of UK adults, making it the most common form of inflammatory arthritis in men and the most common inflammatory arthritis in older women.1 ,2 Of all the types of chronic arthritis, gout is the one we understand best. We know it is a true crystal deposition disease caused by formation of sodium urate crystals in and around peripheral joints as a consequence of persistent elevation of uric acid levels above the critical saturation point for urate crystal formation.1,–,3 We recognise the risk factors for gout and predisposing hyperuricaemia and can diagnose the disease with 100% confidence by demonstrating the pathogenic agents (urate crystals) in joint or tophus aspirates.3 Furthermore, we have treatment strategies to reduce serum uric acid (SUA) levels to below the saturation point for crystal formation, resulting in removal of the pathogenic crystals and ‘cure’ of gout.4 ,5
However, despite availability of effective treatments, it appears that gout management is often suboptimal in primary care. Recent UK studies have suggested that only a third to a half of gout patients receive urate lowering therapy (ULT) and of those that do, many are on an insufficient dose to effect a cure.6,–,9 To improve current standards of care, the British Society for Rheumatology and European League Against Rheumatism have developed evidence-based recommendations for management of gout.4 ,5 However, even if healthcare professionals in general practice followed evidence-based guidelines, it is unclear whether patients would adhere to recommended lifestyle changes and long-term medication regimens. There is a complex interaction among lay beliefs about cause, treatment and management of chronic diseases and health behaviour10 ,11 and studies of patients with osteoarthritis have highlighted the importance of eliciting and understanding patients' beliefs about their disease in ensuring the success and effectiveness of interventions, including lifestyle modification, to improve outcomes.12 We therefore undertook the present study to: (A) explore gout patients' beliefs about their condition to determine any barriers that may influence their acceptability of pharmacological and non-pharmacological treatment of their gout and (B) explore health professionals' experiences of treatment and their attitudes to long-term management of gout. It was hoped that the results of this study would inform strategies to improve management of gout in general practice.
Methods
This study was part of the first phase of the Nottingham Gout Treatment Trial which aims to develop a practical complex intervention (package of care) for patients with gout and to test its efficacy and cost-effectiveness in primary care. Participants in this study were recruited from 25 general practices and one hospital within Nottinghamshire. Approval for the study was obtained from the NHS Nottingham Research Ethics Committee 2.
Sampling
Patients with a diagnosis of gout on the general practice registers were eligible if they were aged between 30 and 100, had suffered from clinical gout within the previous year (irrespective of any ULT) and had an SUA level >360 µmol/l (ie, suboptimally treated). Consenting participants were identified via a letter and subsequently by a telephone call, screening visit and blood test. A total of 106 such participants were recruited into a 1-year hospital-based audit of expert gout care (the quantitative ‘proof of principle’ element of the first phase of the Nottingham Gout Treatment Trial to demonstrate successful treatment of >90% of gout patients given the optimal context of a hospital-based specialist gout clinic). Twenty participants recruited for the qualitative study were interviewed within 3 months of starting the clinic. At their first clinic visit, each participant received a full assessment from a rheumatologist specialising in gout, involving medical enquiry, physical examination and aspiration of fluid from an inter-critical joint (knee or 1st metatarsophalangeal joint) to confirm urate crystal deposition. Detailed patient information and education were also given in relation to the nature of the disease, its prognosis with respect to on-going acute attacks and possible irreversible joint damage, and strategies to reduce SUA levels to prevent new crystal formation and to dissolve existing crystals (ie, to effect ‘cure’). Discussions included the importance of lifestyle, weight loss if overweight and dietary factors. A written information leaflet designed by Arthritis Research UK was also given to participants who were then seen on a regular basis (average of eight times over the next year) by a specialist gout nurse to monitor SUA levels and discuss progress.
From these 106 participants, 20 (19%) were sampled to reflect differences across gender, age and length of diagnosis, and purposively recruited after an explanatory letter. Willing participants were contacted by telephone to arrange a time and place to take part in a face-to-face individual semistructured interview. Eighteen interviews were conducted within the participants' home and two within a private room in Academic Rheumatology, Nottingham City Hospital. Health professionals were recruited via an invitation letter sent to the surgeries attended by the 20 gout patients as well as from a National Health Service protected learning event at a local hospital. Interviews were conducted at participants' place of work or at Nottingham City Hospital.
Data collection
Two semistructured interview schedules were designed to ensure that critical topics were covered in both the patient and health professional interviews. Patient topics included: patient beliefs about causes and consequence of gout prior to attendance at the gout clinic; their symptoms (frequency and severity); impact on daily life; emotional and psychological impact; what helped or hindered attacks; management of pain; contact with health professionals; advice/information received; treatment history and preference; future expectations about treatment and outcome; and adherence/non-adherence to health professional advice. Health professional topics included: experiences of dealing with gout patients; knowledge and training in relation to gout; current clinical practice; attitudes to the development of an intervention to improve best practice; and perceived barriers to the effective management and treatment of gout. It was further explained to participants that individual privacy and identity would be protected and that data were being stored securely and in anonymised form.
Data analysis
A grounded theory influenced approach was used to ensure a systematic process was followed in developing knowledge and theory.13 Constant comparison is the process at the heart of grounded theory and the process of constantly comparing data continued until ‘theoretical saturation’ was reached and no new categories or themes were uncovered. Due to the large amounts of verbatim text generated in this study, a computer package that assisted with qualitative data analysis was utilised. Once an interview was completed, the tape recording was uploaded onto a PC and transcribed with the help of a transcription kit and transferred to Nvivo 8. Analysis of the data started in parallel with the data collection, and initial results informed subsequent sampling and data collection as themes and issues emerged. Memos were written about emerging categories, to summarise a point, to critique information and to relate emergent theories to existing literature. Commenting as well as coding is considered central to the process of textual interpretation as coding alone is merely seen as a classification system.14 The authors met regularly to discuss coding and interpretation of data.
Results
Patient analysis
Of the 20 patients interviewed 15 were men and five were women. Ages ranged from 35 to 81 years (mean age 61; SD 10.2). The mean duration of disease was 12 years (SD 11.1; range 2–42 years).
Patient barriers to effective management and treatment of gout
A number of themes/barriers emerged from the data suggesting there were key factors impacting on patients' effective treatment and management of gout within general practice. The main patient barriers are summarised in box 1, which also includes illustrative quotes.
Patient barriers to the effective management and treatment of gout in general practice
▶ Lack of knowledge and understanding about cause and consequence of gout
▶ Masculinity and reluctance to seek medical attention
▶ Non-adherence to pharmacological treatment
▶ Considered part of ageing, self-inflected, stigma and negative stereotypical view
▶ Viewed as an alternative rheumatic disease, not arthritis
▶ Patient illustrative quotes
▶ ‘I mean, I just thought I had arthritis and had to put up with the pain in my joints that have developed over the last seven years. I didn’t realise that, if you could get the uric acid levels down in your blood, you could try and prevent gout attacks from happening' (patient 2, aged 67)
▶ ‘Over the last thirty years I have been dealing with gout in a number of ways, I initially just dealt with it with pain killers and just carried on working. The pain was awful, I mean my children, when they were younger, wouldn’t come near me because of my moods when dealing with the pain and gout attacks' (patient 3, aged 55)
▶ ‘I took the Allopurinol for some time (a couple of years) and didn’t have any attacks, so I thought I had cracked it. I thought it had gone so I took myself off the Allopurinol and I thought I would be fine' (patient 18, aged 58)
▶ ‘I didn’t bother going to the doctors. At one time when I was a lot younger I was embarrassed to tell someone that I had gout because you would get the sarcasm' (patient 17, aged 72)
▶ ‘I was quite surprised when he told me I had gout. I thought gout, I mean, I associated gout with rich old men who drank port. I remembered seeing old pictures of men suffering with gout in bath chairs with bandages up to their thighs. I didn’t think that women suffered with gout' (patient 14, aged 55)
Lack of knowledge and understanding about cause and consequence of gout
There was universal lack of knowledge and understanding about the cause and consequence of gout and the importance of making adequate lifestyle changes and adherence to lifelong ULT. All participants did not fully appreciate that urate crystals would continue to accumulate in their body for the foreseeable future. Patients considered that an attack of gout reflected an occasional build-up of uric acid and that once the attack had resolved there would be no more crystals until the next episode occurred (ie, intermittent rather than continuing crystal formation). Many patients therefore considered that treatment of gout only needs to focus on the acute attack. As well as this basic misunderstanding of their condition and its cause, all participants lacked knowledge about the possible long-term effect of progressive urate crystal deposition on their joints and the risk of irreversible joint damage/osteoarthritis. Participants felt that this aspect had not been explained. Other participants explained that they were unaware that medication such as allopurinol existed, which could help lower uric acid levels, eliminate the crystals and thus prevent gout attacks from occurring.
Masculinity and reluctance to seek medical attention
A number of men had initially been reluctant to seek advice for their symptoms, often waiting several years before consulting their general practitioner (GP). Some commented that during the first few years of dealing with acute attacks they would just put up with the pain and ‘muddle through’. Although all the men described the extreme pain experienced during an acute attack, many felt they just had to ‘grin and bear it’ to avoid the embarrassment as men to admit such severe pain, especially when such a small part of their body, such as a toe, was affected; a number of them described how their initial reluctance to seek medical advice had a significant impact on their ability to work, their physical and emotional well-being, and on relationships at home.
Non-adherence to pharmacological treatment
Many patients admitted to non-adherence to medications prescribed by their GP. This was often due to fear or concern about side-effects or the belief that their condition did not warrant any long-term treatment. Several had experienced side-effects, including more frequent flares of gout, and stopped the medication or reduced the dose because of this. Others explained that they considered themselves cured due to not having experienced an attack for a prolonged period. A number were also reluctant to take lifelong prescribed medication because of concerns about the cumulative effects on their bodies.
Considered part of ageing, self-inflicted, stigma and negative stereotypical view
Many patients viewed their gout as part of ageing or something that they had brought on themselves. All associated their gout with the negative stereotypical images portrayed in Victorian cartoons. Some described how the diagnosis was considered comical by their family, friends and even by their GP. Some described how they felt their painful joints were due to ‘wear and tear’ and getting older. Others described feelings of embarrassment or shame relating to their diagnosis, since they associated their gout with overindulgence in certain foods or alcoholic drinks and linked their condition to an unhealthy lifestyle. These participants clearly considered their condition to be self-inflicted and tended to put up with recurrent acute attacks rather than approach their GP to discuss longer term treatment options. Some held the belief that because their symptoms were self-inflicted they were less worthy of medical attention or help. This common negative view and perceived stigma associated with gout further resulted in participants not wanting to approach their GP for fear of receiving criticism or being reprimanded regarding their lifestyle, diet or weight.
Viewed as an alternative rheumatic disease
A number of patients, especially women, were unwilling to initially accept their diagnosis of gout from their GP because of lay beliefs and stigma they associated with the diagnosis. All five women in the study preferred to view and treat their gout as an alternative rheumatic disease in part because of the misconception that it is a man's disease. Some did not realise that gout was a form of arthritis and considered it a less serious condition.
Provider analysis
Of the 18 health professionals interviewed, six were GPs, five were general physicians with a non-specialist interest in gout and seven were practice nurses, all working in the Nottinghamshire area. From the data, a number of key provider barriers emerged that negatively impacted on the long-term management of gout within general practice (see box 2 for main barriers and illustrative quotes).
Provider barriers to the effective management and treatment of gout in general practice
▶ Gout not always managed as a long-term chronic disease but as an acute condition
▶ Lack of education and information given to patients to encourage lifestyle modification and adherence to long-term pharmacological treatment
▶ Clinical guidelines for gout not utilised in the primary care setting
▶ Lack of understanding and knowledge of gout among certain primary care staff
▶ Lack of training and education in best practice for the treatment and management of gout
▶ Lack of incentive for providers to improve treatment and long-term management of gout in general practice
▶ Provider illustrative quotes
▶ ‘Even in my own mind I don’t treat gout as a chronic disease, I just tend to deal with the acute event so I am just as guilty in not always offering preventative options or giving that information, because perhaps a fifty year old may not have another attack for 10 years' (Health Professional 10)
▶ ‘I think with gout because of time pressures I think education and health promotion about the condition are missed at diagnosis and just the acute attack is dealt with. Plus I suppose there are a lot of assumptions going on, because gout is such a well know condition/diagnosis that the patient looks like he/she understands when you say its gout’ (Health Professional 3)
▶ ‘I think I would usually just make that decision from my clinical experience and would tailor that to my patient’s needs. I don't tend to use clinical guidelines for gout I wasn't aware that any existed' (Health Professional 4)
▶ ‘Even I as a GP do associate gout with the old fashion traditional view that links the condition with the ‘well to do’ port drinking. The message within those cartoons links the condition with obesity and alcohol, which do have some relevance it’s just dealt with in jokey manner' (Health Professional 14)
▶ ‘I think that there is lack of knowledge by both patients and health professionals. I just thought you just had gout flare-ups and then it just went away, so there is definitely a need for education and better training’ (Health Professional 2)
▶ ‘With any GP unless there is some sort of financial incentive say for surgeries to test the uric acid levels of gout patients on a regular basis, I’m not sure that would be done. That would only change if some guidelines came out that suggested that it would be best practice to do so’ (Health Professional 17)
Gout not managed as a long-term chronic disease but as an acute condition
It was apparent that many GPs, and most hospital physicians, were reluctant to offer ULT until patients had suffered recurrent frequent gout attacks for some considerable time. Most commented that they mainly offered non-steroidal anti-inflammatory drugs for acute attacks and presumed that patients would be happier to treat gout flares in this way, rather than to take lifelong medication. A number of GPs highlighted how concerns over patient adherence to lifelong ULT left them little option other than to repeatedly prescribe non-steroidal anti-inflammatory drugs. It was not until a patient's severity and frequency of attacks increased that GPs considered ULT. All GPs interviewed specified allopurinol as the ULT they would use, most prescribing only up to 300 mg per day for patients and some saying that they would look up the preferred (single) dose.
Lack of education and information given to patients
Health professionals in general practice often assumed that people with gout had a better understanding of their condition than they actually did. Many patients were given little information about gout, its prognosis or the different types of available treatment. Very few surgeons were aware of available patient literature or gout websites and most professionals used verbal explanation alone to inform their patients about their gout. On reflection, a number of GPs commented that they did not always give enough information to patients about possible long-term consequences of gout or explain that gout is a long-term condition.
Clinical guidelines for gout not utilised in the primary care setting
None of the 18 health professionals were aware of existing clinical guidelines for diagnosis or management of gout and none had sought guidelines to assist them. However, when asked about their thoughts on this, they all considered that use of clinical guidelines would be a good idea and would help improve best practice.
Lack of understanding and knowledge of gout
Although most GPs and physicians had a reasonable understanding of gout, some practice nurses were not very knowledgeable about gout or its management. The nurses only encountered gout as a comorbidity in patients who accessed nurse-led chronic disease management clinics (eg, for diabetes or chronic renal impairment) and so their knowledge ranged from a ‘good’ to ‘basic’ concept of gout. In the absence of sound knowledge, most health professionals made assumptions about gout that mirrored the general population perspectives: that it is predominantly self-inflicted and due to unhealthy lifestyles.
Lack of training and education in best practice for the treatment and management of gout
Lack of education and training concerning gout at both undergraduate and postgraduate levels was a recurrent theme with almost all participants. This left many health professionals depending on a varying degree on self-directed learning as and when the need arose. Thus, opportunities to inform and support gout patients in the long-term management of their condition were sometimes missed due to lack of knowledge of best practice.
Lack of incentive for providers to improve treatment and long-term management of gout in general practice
When asked about what barriers they thought existed in relation to implementing best practice guidelines for gout in general practice, many health professionals highlighted the current lack of incentives to optimise treatment. Some considered that unless there were financial incentives, for example, if gout had Quality Outcome Framework status, practices would not alter their current standard of care.
Discussion
This is the first qualitative study in the UK to examine patient and provider attitudes and experiences of gout and its management. The study has identified several common misconceptions and barriers to care that have impacted negatively on the management that patients receive. The main barriers identified include: lack of patient education and information on gout; the stereotypical perception of gout, held both by patients and health professionals, as a rather comical, self-inflicted condition due to overindulgence and unhealthy lifestyle; a focus just on treating acute attacks; little concept of long-term consequences or of potential benefits, including ‘cure’, from chronic treatment; reluctance by doctors to use ULT until attacks become frequent and severe; and lack of provider knowledge of recommended best practice guidelines for gout. For patients in this study, poor two-way communication with their doctor undoubtedly led to suboptimal care.
Recent audits from the UK6,–,9 ,15 and other countries8 ,16,–,20 confirm that the management of gout is often far from optimal and that poorly treated gout has a significant impact on work and social participation21 ,22 and reduces quality of life.23 However, few studies have tried to examine the reasons for such suboptimal delivery of care. Inadequate patient education about gout and its management is an obvious key issue.24 As in our study, a recent qualitative study of 11 men with gout in New Zealand confirmed marked lack of knowledge of gout and its management.22 That study also found similar illness perceptions and barriers to care as we did in the male patients in our study, including stoicism with regard to painful attacks, and embarrassment, guilt and trivialising of their condition because of the personal and social stigma associated with gout. The second obvious major barrier to care identified in our study was lack of knowledge of gout among health professionals. This concurs with audits undertaken in Europe and the US that show marked variability in knowledge of gout and common lack of application of recommended best practice by many doctors, including rheumatologists.25,–,27 Central to all the barriers that we encountered was the inter-related lack of education and knowledge both in providers and patients. This led to similar illness perceptions both in patients and health professionals with gout not being viewed seriously as a form of inflammatory arthritis, and acceptance of its management as an intermittent acute condition rather than as a chronic on-going, potentially damaging crystal deposition disease.
The source of the lay perspectives of gout is of some interest. Many people appear to have seen old comical cartoons portraying overindulgent men drinking excessive port and suffering from gout (figure 1). Understandably, they then associate gout with excessive alcohol and ‘rich food’ and these associations are shared by some healthcare professionals.
Negative stereotypical image of gout (‘Punch cures the gout’, anonymous 1799) highlighted both by patients and health professionals.
The findings of this study have clear implications with respect to improving standards of care for patients with gout. Health professionals require better training and education in this condition, but they also appear to need incentives to apply treatment guidelines in general practice. Although clinical guidelines abound, they often have little impact on clinical practice.28 The reasons for this vary29 but it appears that poor adherence by GPs to management guidelines is not unique to gout. Any guideline should encourage health professionals to give a clear explanation of gout which could be reinforced by already available educational aids. A full explanation of risk factors for gout that includes due emphasis on hereditary factors (predominantly inefficient renal urate clearance), high body mass index, comorbidity and drugs that elevate SUA would encourage gout sufferers to see beyond the negative stereotypical view they associate with their disease. In other forms of arthritis, such as osteoarthritis, illness beliefs have been shown to have a strong influence on patients' health behaviour including their adherence to medication and other interventions.30 ,31 It seems likely that addressing illness perceptions that are barriers to care through improved patient/provider communication and applying currently recommended management principles4 ,5 ,32 ,33 could have a major impact on the standard of care of people with gout.24
There are caveats to this study that may limit generalisability of the findings. First, the sample size is small. Our intention, however, was not to obtain statistical data representative of all UK gout patients and providers, but to use a sampling strategy that allowed indepth exploration and insight into previously hidden experiences and attitudes of gout patients and their health providers. Second, we only studied participants from Nottinghamshire. Although our results concur with those obtained in male patients as far away as New Zealand,22 it would be of interest to repeat similar studies in other areas of the UK and in other countries.
In conclusion, we have identified a number of illness perceptions both in patients and health professionals that are important barriers to the management of gout. Health professionals appear to require better education concerning gout as well as incentives to deliver currently recommended best practice. This should include a shift from management as a recurrent acute condition to management as a chronic crystal deposition disease for which there are ‘curative’ treatment options. Patient education should be a two-way process where patients are encouraged to share their perceptions of their illness and its treatment. This will allow health professionals to identify and address potential barriers to care and help promote patient adherence. Future studies are required to develop and test a deliverable package of care that can overcome these barriers and which reflects current management guidelines.
Acknowledgments
The authors are indebted to Arthritis Research UK (award ref 18827) who funded this work and to the patients and health professionals who kindly participated in the study.
References
Footnotes
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Contributors Guarantor: MD, Conception: MD and AC, Data acquisition: KS, Analysis: KS, Manuscript draft: KS, Advice on editing of manuscript: MD and AC
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Funding Arthritis Research UK.
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Competing interests None.
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Ethics approval Approval provided by the Nottingham Research Ethics Committee 2.
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Provenance and peer review Not commissioned; externally peer reviewed.