Factors associated with change in health-related quality of life in people with gout: a 3-year prospective cohort study in primary care.

OBJECTIVE: To describe factors associated with change in health-related quality of life (HRQOL) in people living with gout in primary care. METHODS: In a UK prospective cohort study, adults with a diagnosis of gout registered with 20 general practices completed the Gout Impact Scale (GIS; scale 0-100), 36-item Short Form Physical Function subscale (PF-10; 0-100) and HAQ Disability Index (HAQ-DI; 0-3) via postal questionnaires at baseline and 6, 12, 24 and 36 months. Linear mixed modelling was used to investigate factors associated with changes in HRQOL over 3 years. RESULTS: A total of 1184 participants responded at baseline (adjusted response 65.6%); 990 (83.6%) were male, with a mean age of 65.6 years (s.d. 12.5). A total of 818, 721, 696 and 605 responded at 6, 12, 24 and 36 months, respectively. Factors associated with worse disease-specific and generic HRQOL over 3 years were flare frequency (five or more flares; GIS subscales, PF-10), oligo/polyarticular flares (GIS subscales, PF-10, HAQ-DI), worse pain (GIS subscales, PF-10, HAQ-DI), body pain (GIS subscales, PF-10, HAQ-DI) and more severe depression (GIS subscales, PF-10, HAQ-DI) (P ≤ 0.05). More severe anxiety was associated with worse disease-specific HRQOL only (GIS subscales). Older age (PF-10), being female (PF-10, HAQ-DI) and BMI (HAQ-DI) were associated with worse generic HRQOL (P ≤ 0.05). CONCLUSION: Gout-specific, comorbid and sociodemographic factors were associated with change in HRQOL over a 3-year period, highlighting people at risk of worse outcomes who could be targeted for interventions.

'It's just a great muddle when it comes to food': a qualitative exploration of patient decision-making around diet and gout.

OBJECTIVE: Our aim was to understand whether, why and how patients choose to modify their diets after developing gout. METHODS: We conducted an inductive thematic secondary analysis of qualitative data from 43 interviews and four focus groups with UK participants with gout (n = 61). RESULTS: Participants commonly initiated dietary changes as part of a self-management strategy for gout. Reasons for making such dietary changes included: desperation; a desire for control; and belief that it would be possible to achieve successful management through diet alone; but not weight loss. Participants who did not make changes or who reverted to previous dietary patterns did so because: they believed urate-lowering therapy was successfully managing their gout; medication allowed normal eating; they did not find 'proof' that diet would be an effective treatment; or the dietary advice they found was unrealistic, unmanageable or irrelevant. Dietary modification was patient led, but patients would have preferred the support of a health-care professional. Beliefs that diet could potentially explain and modify the timing of flares gave patients a sense of control over the condition. However, the belief that gout could be controlled through dietary modification appeared to be a barrier to acceptance of management with urate-lowering therapy. CONCLUSIONS: Perceptions about gout and diet play a large role in the way patients make decisions about how to manage gout in their everyday lives. Addressing the reasons why patients explore dietary solutions, promoting the value of urate-lowering therapy and weight loss and drawing on strong evidence to communicate clearly will be crucial in improving long-term clinical management and patient experience.

Epidemiology, morbidity and mortality in Behçet's disease: a cohort study using The Health Improvement Network (THIN).

OBJECTIVES: The epidemiology of Behçet's disease (BD) has not been well characterized in the UK. Evidence on the risk of cardiovascular disease, thromboembolic disease and mortality in patients with BD compared with the general population is scarce. METHODS: We used a large UK primary care database to investigate the epidemiology of BD. A retrospective matched cohort study was used to assess the following outcomes: risk of cardiovascular, thromboembolic disease and mortality. Controls were selected at a 1:4 ratio (age and gender matched). Cox proportional hazard models were used to derive adjusted hazard ratios (aHR). RESULTS: The prevalence of BD was 14.61 (95% CI 13.35-15.88) per 100 000 population in 2017. A total of 1281 patients with BD were compared with 5124 age- and gender-matched controls. There was significantly increased risk of ischaemic heart disease [aHR 3.09 (1.28-7.44)], venous thrombosis [aHR 4.80 (2.42-9.54)] and mortality [aHR 1.40 (1.07-1.84)] in patients with BD compared with corresponding controls. Patients with BD were at higher risk of pulmonary embolism compared with corresponding controls at baseline [adjusted odds ratio 4.64 (2.66-8.09), P < 0.0001]. The majority of patients with pulmonary embolism and a diagnosis of BD had pulmonary embolism preceding the diagnosis of BD, not after (87.5%; n = 28/32). CONCLUSION: BD has a higher prevalence than previously thought. Physicians should be aware of the increased risk of developing ischaemic heart disease, stroke/transient ischaemic attack and deep venous thrombosis in patients with BD at an earlier age compared with the general population. Risk of embolism in patients with BD might vary across the disease course.

Health-related quality of life in gout in primary care: Baseline findings from a cohort study.

OBJECTIVES: To examine gout-related, comorbid, and sociodemographic characteristics associated with generic and disease-specific health-related quality of life (HRQOL) in gout. METHODS: Adults with gout from 20 general practices were mailed a questionnaire containing the Health Assessment Questionnaire-Disability Index (HAQ-DI), Short-Form-36 Physical Function subscale (PF-10), Gout Impact Scale (GIS), and questions about gout-specific, comorbid and sociodemographic characteristics. Variables associated with HRQOL were examined using multivariable linear regression models. RESULTS: A total of 1184 completed questionnaires were received (response 65.9%). Worse generic and gout-specific HRQOL was associated with frequent gout attacks (≥5 attacks PF-10 ß = -4.90, HAQ-DI ß = 0.14, GIS subscales ß = 8.94, 33.26), current attack (HAQ-DI ß = 0.15, GIS ß = -1.94, 18.89), oligo/polyarticular attacks (HAQ-DI ß = 0.11, GIS ß = 0.78, 7.86), body pain (PF-10 ß = -10.68, HAQ-DI ß = 0.29, GIS ß = 2.61, 11.89), anxiety (PF-10 ß = -1.81, HAQ-DI ß = 0.06, GIS ß = 0.38, 1.70), depression (PF-10 ß = -1.98, HAQ-DI ß = 0.06, GIS 0.42, 1.47) and alcohol non-consumption (PF-10 ß = -16.10, HAQ-DI ß = 0.45). Gout-specific HRQOL was better in Caucasians than non-Caucasians (GIS ß = -13.05, -13.48). Poorer generic HRQOL was associated with diabetes mellitus (PF-10 ß = -4.33, HAQ-DI ß = 0.14), stroke (PF-10 ß = -12.21, HAQ-DI ß = 0.37), renal failure (PF-10 ß = -9.43, HAQ-DI ß = 0.21), myocardial infarction (HAQ-DI ß = 0.17), female gender (PF-10 ß = -17.26, HAQ-DI ß = 0.43), deprivation (PF-10 ß = -7.80, HAQ-DI ß = 0.19), and body mass index ≥35kg/m2 (PF-10 ß = -6.10, HAQ-DI ß = 0.21). CONCLUSIONS: HRQOL in gout is impaired by gout-specific, comorbid, and sociodemographic characteristics, highlighting the importance of comorbidity screening and early urate-lowering therapy. Both gout-specific and generic questionnaires identify the impact of disease-specific features on HRQOL but studies focusing on comorbidity should include generic instruments.

Illness perceptions of gout patients and the use of allopurinol in primary care: baseline findings from a prospective cohort study.

BACKGROUND: Patients' perceptions of their illness are dynamic and can directly influence aspects of management. Our aim was to examine the illness perceptions of gout patients in UK primary care and associations with allopurinol use. METHODS: A health questionnaire was sent to 1805 people with gout aged ≥18 years identified by a gout diagnosis or prescriptions for allopurinol or colchicine in their primary care medical records in the preceding 2 years. The questionnaire included selected items from the revised illness perception questionnaire (IPQ-R). Associations between illness perceptions and use of allopurinol were calculated using multinomial logistic regression adjusted for age, gender, deprivation status, body mass index, alcohol consumption, comorbidities and gout characteristics. RESULTS: One thousand one hundred eighty-four participants responded to the baseline questionnaire (65.6 %). Approximately half of responders perceived that they were able to control (51.2 %) or affect their gout through their own actions (44.8 %). Three quarters perceived treatments to be effective (76.4 %) and agreed that gout is a serious condition (76.4 %). Patients who agreed that they could control their gout (Relative Risk Ratio, 95 % confidence interval 1.66 (1.12 to 2.45)) and that treatments were effective (2.24 (1.32 to 3.81)) were more likely to currently be using allopurinol than not using allopurinol. However, this significance was attenuated after adjustment for self-reported gout characteristics (1.39 (0.89 to 2.17) & 1.78 (0.96 to 3.29) respectively). CONCLUSIONS: Patients who perceive that they can control their gout and that treatments are effective are more likely to be using allopurinol, this suggests that better information is needed for the patient from GPs and rheumatologist to reassure and support their use of ULT.

Gout characteristics associate with depression, but not anxiety, in primary care: Baseline findings from a prospective cohort study.

OBJECTIVES: To determine the prevalence of anxiety and depression in gout, examine associations between gout characteristics and these comorbidities and determine the role of allopurinol in any such relationships. METHOD: As part of a prospective cohort study, a baseline questionnaire was sent to 1805 participants with gout aged≥18 years from UK primary care. Participants had a gout diagnosis or prescriptions for allopurinol or colchicine in their medical records 2 years prior to baseline. Prevalence of anxiety was defined using the Generalised Anxiety Disorder questionnaire and depression using the Patient Health Questionnaire. Logistic regression was used to examine any association between gout characteristics (12-month attack frequency, oligo/polyarticular gout and gout duration) and the presence of anxiety or depression. Crude and adjusted associations were reported as odds ratios (OR) and 95% confidence intervals (CI). Adjusted gout characteristics were stratified by allopurinol use. RESULTS: One thousand one hundred and eighty-four participants responded to baseline (65.6%). Prevalence of anxiety and depression were 10.0% and 12.6% respectively. There was no association between gout characteristics and anxiety. However, there was an association between attack frequency and depression amongst those gout patients using allopurinol (2.87 [1.2 to 6.6]) and also between oligo/polyarticular gout and depression (2.01 [1.2 to 3.3]), irrespective of allopurinol use (2.09 [1.1 to 4.0]) or not (2.64 [1.0 to 6.8]). CONCLUSION: Patients experiencing frequent gout attacks or attacks in multiple joints are likely to experience depressive symptoms, even when using allopurinol. Depression may influence medication adherence and participation in routine reviews, hence impacting adversely on gout management outcomes.

"You want to get on with the rest of your life": a qualitative study of health-related quality of life in gout.

The objective of the study is to examine the impact of gout and its treatments on health-related quality of life (HRQOL) using focus group interviews. From the baseline phase of a cohort study of HRQOL in gout, 17 participants (15 males, mean age 71 years) with varying attack frequency and treatment with and without allopurinol participated in one of four focus group interviews. All interviews were audio-recorded and transcribed verbatim. Data was analysed thematically. Physical and psychosocial HRQOL in gout was affected by characteristics of acute gout (particularly the unpredictable nature of attacks, location of joint involved in an attack, pain and modifications in lifestyle), lack of understanding of gout by others (association with unhealthy lifestyle, symptoms ridiculed as non-severe and non-serious) as well as participants (not considered a disease) and the lack of information provided by physicians (about causes and pharmacological as well as non-pharmacological treatments of gout). Participants emphasised the impact of acute attacks of gout and prioritised dietary modifications and treatment of acute attacks over long-term urate-lowering therapy. Characteristics of acute gout, lack of understanding and information about gout and its treatments perpetuate poor HRQOL. HRQOL (maintenance of usual diet and reduced frequency of attacks) was associated with urate-lowering treatment. Better patient, public and practitioner education about gout being a chronic condition associated with co-morbidities and poor HRQOL may improve understanding and long-term treatment of gout.

Foot problems in people with gout in primary care: baseline findings from a prospective cohort study.

BACKGROUND: Foot problems are common in people with gout yet the prevalence of current foot problems in people with gout and the burden they present to healthcare systems is not known. This cross-sectional study aimed to determine the prevalence and associations of hallux valgus, foot pain and disability in people with gout, and to assess the frequency with which foot problems lead to consultation with healthcare professionals. METHODS: Adults registered with 20 general practices who had consulted their GP about gout or been prescribed allopurinol or colchicine in the preceding two years were mailed a questionnaire. Prevalence of hallux valgus, foot pain in the last month, and disabling foot pain in the mailed population were ascertained using validated instruments and estimated by inverse-weighted logistic regression. Associations with socio-demographic, comorbid and gout-specific factors were examined using logistic regression. Participants were asked if they had seen health care professionals for foot problems within the preceding 12 months. RESULTS: One thousand one hundred eighty-four questionnaires were received (response 66 %). Prevalence of hallux valgus was 36.3 %, foot pain in the last month 22.3 % and disabling foot pain 14.5 %. Hallux valgus associated with age (adjusted OR 1.47 per 10-year increase, 95 % CI 1.26, 1.72) and female gender (2.03; 1.31, 3.15). Foot pain in the last month associated with age (1.24; 1.00, 1.55), obesity (BMI 30.0-34.9 2.67; 1.32, 5.38; BMI ≥ 35.0 3.16; 1.44, 6.93), mild depression (2.04; 1.09, 3.81) and polyarticular gout attacks (1.86; 1.18, 2.95). Disabling foot pain associated with age (1.42; 1.08, 1.87), obesity (BMI 30.0-34.9 3.73; 1.54, 9.09; BMI ≥ 35.0 4.36; 1.64, 11.64), depression (mild 2.63; 1.25, 5.53; moderate 3.53; 1.11, 11.26) and ischaemic heart disease (2.45; 1.32, 4.53). In the previous 12 months, 495 (42.8 %) reported consulting their GP about their feet and 281 (23.7 %) a podiatrist/chiropodist. CONCLUSIONS: Foot problems are common in people with gout and frequently lead to healthcare consultation. Hallux valgus has similar associations to those seen in the general population, whereas foot pain associates with obesity and gout characteristics, and disabling foot pain with obesity and comorbidity. Patient assessment should consider foot problems and offer specific treatment where relevant.

Health-related quality of life in gout: a systematic review.

OBJECTIVES: To identify the instruments that have been used to measure health-related quality of life (HRQOL) in gout and assess their clinimetric properties, determine the distribution of HRQOL in gout and identify factors associated with poor HRQOL. METHODS: Medline, CINAHL, EMBASE and PsycINFO were searched from inception to October 2012. Search terms pertained to gout, health or functional status, clinimetric properties and HRQOL. Study data extraction and quality assessment were performed by two independent reviewers. RESULTS: From 474 identified studies, 22 met the inclusion criteria. Health Assessment Questionnaire Disability Index (HAQ-DI) and Short Form 36 (SF-36) were most frequently used and highest rated due to robust construct and concurrent validity, despite high floor and ceiling effects. The Gout Impact Scale had good content validity. Gout had a greater impact on physical HRQOL compared to other domains. Both gout-specific features (attack frequency and intensity, intercritical pain and number of joints involved) and comorbid disease were associated with poor HRQOL. Evidence for objective features such as tophi and serum uric acid was less robust. Limitations of existing studies include cross-sectional design, recruitment from specialist clinic settings and frequent use of generic instruments. CONCLUSION: Most studies have used the generic HAQ-DI and SF-36. Gout-specific characteristics and comorbidities contribute to poor HRQOL. There is a need for a cohort study in primary care (where most patients with gout are treated) to determine which factors predict changes in HRQOL over time. This will enable those at risk of deterioration to be identified and better targeted for treatment.

Prospective observational cohort study of Health Related Quality of Life (HRQOL), chronic foot problems and their determinants in gout: a research protocol.

BACKGROUND: Gout is the commonest inflammatory arthritis affecting around 1.4% of adults in Europe. It is predominantly managed in primary care and classically affects the joints of the foot, particularly the first metatarsophalangeal joint. Gout related factors (including disease characteristics and treatment) as well as comorbid chronic disease are associated with poor Health Related Quality of Life (HRQOL) yet to date there is limited evidence concerning gout in a community setting. Existing epidemiological studies are limited by their cross-sectional design, selection of secondary care patients with atypical disease and the use of generic tools to measure HRQOL. This 3 year primary care-based prospective observational cohort study will describe the spectrum of HRQOL in community dwelling patients with gout, associated factors, predictors of poor outcome, and prevalence and incidence of foot problems in gout patients. METHODS: Adults aged ≥ 18 years diagnosed with gout or prescribed colchicine or allopurinol in the preceding 2 years will be identified through Read codes and mailed a series of self-completion postal questionnaires over a 3-year period. Consenting participants will have their general practice medical records reviewed. DISCUSSION: This is the first prospective cohort study of HRQOL in patients with gout in primary care in the UK. The combination of survey data and medical record review will allow an in-depth understanding of factors that are associated with and lead to poor HRQOL and foot problems in gout. Identification of these factors will improve the management of this prevalent, yet under-treated, condition in primary care.