Gout Self-Management in African American Veterans: A Qualitative Exploration of Challenges and Solutions From Patients' Perspectives.

OBJECTIVE: To explore gout self-management and associated challenges and solutions in African Americans. METHODS: We conducted semistructured interviews with 35 African American veterans with gout, who received health care at Birmingham or Philadelphia Veterans Affairs (VA) medical centers, had filled urate-lowering therapy (ULT; most commonly allopurinol) for at least 6 months, and had a ULT medication possession ratio ≥80%. The interview protocol was constructed to explore key concepts related to gout self-management, including initial diagnosis of gout, beginning medical care for gout, the course of the gout, ULT medication adherence, dietary strategies, comorbidity and side effects, and social support. RESULTS: Thirty-five African American male veterans with gout who had ≥80% ULT adherence (most commonly, allopurinol) were interviewed at Birmingham (n = 18) or Philadelphia (n = 17) VA medical centers. Mean age was 65 years, mean body mass index was 31.9 kg/m2 , 97% had hypertension, 23% had coronary artery disease, and 31% had renal failure. The main themes motivating African American veterans to better gout self-management were fear of pain, adherence to medications, self-discipline, lifestyle changes, information gathering, and developing a positive outlook. Birmingham participants more frequently revealed skipping gout medications. More Philadelphia participants discussed lifestyle/diet changes to prevent gout flares, indicated limiting social activities that involved drinking, and sought more information about gout self-management from health care providers and internet sources. CONCLUSION: Identified themes, including cultural differences by site, led to the development of a patient-centered intervention to improve gout self-management in African American men with gout.

Comparison of expectations of physicians and patients with rheumatoid arthritis for rheumatology clinic visits: a pilot, multicenter, international study.

AIM: To describe and compare expectations of patients with rheumatoid arthritis (RA) and their physicians with regard to what is most important to achieve during a rheumatology clinic visit. METHODS: Subjects were RA patients enrolled in four centers from China, one from Japan and one from the USA, and rheumatologists at those centers. The questionnaires were provided at clinics and patients were asked to list their three top priorities for the rheumatology clinic visit. Physicians were contacted separately and asked to give three general expectations, not for specific visits. We classified clinical expectations into a series of 24 terms for patients and 17 for physicians. We compared physicians' to patients' responses, compared expectations among centers in China, Japan and the USA, and evaluated relationships between patients' responses and age, gender, nationality, disease duration and DAS-28 (Disease Activity Score-28). RESULTS: Patients' clinical expectations for visits focused primarily on control of pain (63.7%), improvement of function (49.3%) and discussion of effects of medication (38.1%). Physicians also included control of pain (59.5%), but also emphasized inquiry about drug side-effects (47.8%) and objective assessment of disease activity (41.4%). We found no differences related to patients' gender, disease duration and DAS-28, but there were some differences related to age and nationality. CONCLUSION: We found some agreement and some discordance of clinical expectations between RA patients and physicians. There appear to be some different expectations in different countries. Findings from this pilot survey may help physicians consider patients' expectations in planning rheumatology clinic visits and may lead to further hypothesis-driven studies.

Developing a provisional definition of flare in patients with established gout.

OBJECTIVE: Various nonvalidated criteria for disease flare have been used in studies of gout. Our objective was to develop empirical definitions for a gout flare from patient-reported features. METHODS: Possible elements for flare criteria were previously reported. Data were collected from 210 gout patients at 8 international sites to evaluate potential gout flare criteria against the gold standard of an expert rheumatologist definition. Flare definitions based on the presence of the number of criteria independently associated with the flare and classification and regression tree approaches were developed. RESULTS: The mean ± SD age of the study participants was 56.2 ± 15 years, 207 of them (98%) were men, and 54 of them (26%) had flares of gout. The presence of any patient-reported warm joint, any patient-reported swollen joint, patient-reported pain at rest score of >3 (0-10 scale), and patient-reported flare were independently associated with the study gold standard. The greatest discriminating power was noted for the presence of 3 or more of the above 4 criteria (sensitivity 91% and specificity 82%). Requiring all 4 criteria provided the highest specificity (96%) and positive predictive value (85%). A classification tree identified pain at rest with a score of >3, followed by patient self-reported flare, as the rule associated with the gold standard (sensitivity 83% and specificity 90%). CONCLUSION: We propose definitions for a disease flare based on self-reported items in patients previously diagnosed as having gout. Patient-reported flare, joint pain at rest, warm joints, and swollen joints were most strongly associated with presence of a gout flare. These provisional definitions will next be validated in clinical trials.

Development and evaluation of a survey of gout patients concerning their knowledge about gout.

OBJECTIVE: The objective of the study was to develop and test a survey of gout patients regarding their level of disease-related knowledge, to identify potential targets for patient education. METHODS: A 10-item questionnaire with readability at a Flesch-Kincaid grade level of 4.6 and Flesch reading ease of 83.9% was designed to address parameters considered important for patient participation in the management of gout. The questionnaire was primarily evaluated at the Veterans Affairs (VA) Medical Center in Philadelphia, but was also secondarily performed at 2 Chinese hospitals, the Sun Yat-sen Memorial Hospital of Zhong Shan University, Guangdong Province (GZ), and the Qingdao Municipal Hospital, Qingdao City, Shandong Province (QD). Demographic and questionnaire data by institution were evaluated using descriptive statistics, and significant differences were identified by χ and Fisher exact tests. Patient responses were displayed by each individual question and by the distribution of total scores. Kruskal-Wallis tests of significance were used for nonparametric or skewed data. Intraclass correlations (ICCs) were performed within the VA population to determine internal consistency of the individual questions. A high score was defined as greater than 7 (the median value). Multivariate regression models using demographic and clinical characteristics attempted to identify factors associated with correct answers to each question. RESULTS: Total correct score for individual patients varied widely at each institution with a mean (SD) and median (interquartile range [IQR]) scores in all 3 hospitals of 6.15 (2.25) and 7 (5-8), respectively. The average numbers of correct responses for each institution were 4.38 (SD, 3.04) (median, 4 [IQR, 2-7]) at GZ; 7.05 (SD, 1.37) (median, 8 [IQR, 6-8]) at QD; 6.21 (SD, 1.74) (median, 7 [IQR, 6-7]) at VA; P = 0.0010. Two questions (Q4 and Q10) were identified as difficult to understand by patients and showed poor ICC (ICC = 0.0000, P > 0.5) at the VA. Questions that were more difficult to answer were (1) Q3: What inside the joint causes attacks of gout? (GZ, 28.6%; QD, 7.7%; VA, 72.4%; P = 0.000); (2) Q8: How long should patients continue with serum uric acid-lowering drugs? (GZ, 19.1%; QD, 10.3%; VA, 82.7%; P = 0.000); (3) Q6: The ideal serum uric acid to aim at during treatment? (GZ, 42.8%; QD, 89.7%; and VA, 17.2%; P = 0.000); and (4) Q5: Which drugs can lower serum uric acid? (GZ, 61.9%; QD, 89.7%; VA, 51.7%; P = 0.002). CONCLUSIONS: This study describes an easy-to-read 10-item questionnaire that can identify important knowledge gaps in patients with gout. This can be the first step in designing educational interventions to improve patient understanding and improve clinical care.

Poor validation of medical record ICD-9 diagnoses of gout in a veterans affairs database.

OBJECTIVE: Diagnostic codes based on medical records or claims data have been used to identify patient populations with gout for important epidemiologic and clinical studies. We evaluated whether we can document the accuracy of such diagnoses by review of medical records and then on direct interviews with a subset of patients. METHODS: Electronic medical records of 289 patients with 2 visits with ICD-9 codes for gout were extensively reviewed to search for documentation of features that would classify patients as having gout by 3 sets of proposed criteria, the American College of Rheumatology (ACR), New York, or Rome criteria. Records of patients who had been seen by rheumatologists were compared with all others. A subset of patients seen in clinic were directly interviewed for comparison with the results from the records. RESULTS: Based on medical records review there was documentation of gout by the ACR criteria in only 36%, Rome criteria in 30%, and New York criteria in 33%. Records of patients who had seen rheumatologists had better documentation of classification features. Interview in clinic of 37 patients also improved documentation of the 3 sets of criteria features of gout in 65%-81% of those with ICD-9 codes for gout. CONCLUSION: We found it difficult to confirm ICD-9 coded diagnoses of gout using currently available proposed criteria from details recorded in medical records. This may reflect a problem with available criteria and with documentation. Direct interview of patients may be needed to confirm the presence of typical features when high specificity is desired.

Clinical diagnostic criteria for gout: comparison with the gold standard of synovial fluid crystal analysis.

BACKGROUND: Several classification or diagnostic criteria sets for gout have been proposed but none validated. OBJECTIVE: This small pilot study considered urate crystal identification as the gold standard for diagnosis and compared the clinical aspects of 3 proposed criteria sets with that standard. METHODS: Eighty-two subjects who had synovial fluid analyses in a VA medical center were studied. ARA (ACR), Rome, and New York clinical criteria sets and individual criteria were recorded in the 30 patients who had urate crystals versus the remainder with no urate crystals. RESULTS: Presence of 2 of 3 Rome clinical criteria had the highest positive predictive value at 76.9%. None of the 3 studied criteria sets were more than 70% sensitive or 88.5% specific. The clinical features of the ARA (ACR) preliminary classification criteria had 70% sensitivity and 78.8% specificity. CONCLUSIONS: The various proposed clinical criteria can provide support for a diagnosis or exclusion of gout, but unless improved criteria can be developed crystal identification should remain the gold standard.