What do patients with rheumatoid arthritis know about their own biomedical data related to cardiovascular disease risks?

OBJECTIVE: Rheumatoid arthritis (RA) is a chronic condition characterized by articular and non-articular features. Patients with RA have an increased risk of developing cardiovascular disease. This study aimed to ascertain what patients with RA know about their numbers (biomedical data, including blood pressure, cholesterol, disease activity score-28 joints [DAS28], and body mass index [BMI]) and to understand the barriers to patients knowing these health indicators and how their knowledge can be improved. METHODS: A total of 50 consecutive patients from a clinic were approached to complete an anonymous survey in a nurse-led clinic. The questionnaire included 10 questions that assessed the demographic data, knowledge of biomedical data, importance of these data, and how their awareness could be increased. RESULTS: A total of 40 patients responded to the questionnaire; the estimated mean age was 58.1±13.4 (mean±standard deviation) years. Most respondents were females (87%). The highest disease category duration was 2-5 years (40% patients). Moreover, 30% of respondents were aware of the "know your numbers" concept; 90% did not know their BMI, and 75% did not know about their DAS28 score. Furthermore, 40% reported that they were not informed about their biomedical data; 95% of patients revealed that they would like to know their numbers; 27.5% suggested that a regularly updated and explained written record would be appropriate, and 35% proposed that a multidisciplinary input would be useful in regularly informing them of the numbers. CONCLUSION: This study has shown that although patients are not very familiar with all of their biomedical data, they are interested in knowing them. Knowing their biomedical data may encourage them to be more concerned about their health and even lead to improved RA self-management and health outcomes.

Improving access to digital ulcer care through nurse-led clinic: a service evaluation.

OBJECTIVE: Digital ulcers (DU) remain one of the most burdensome co-morbidities in systemic sclerosis. The objectives of the study were to describe patient-level stratification and to evaluate a nurse-led DU clinic service development. METHODS: A nurse-led digital ulcer clinic was established to identify patients with DU and manage them. Patients were recruited through scleroderma clinics, GP referrals, and self-referrals. The clinic involved patients being treated with appropriate treatment. Patients were stratified according to their DU risk level based on number and severity of ulcers. Among these, 22 patients were asked to complete a patient satisfaction survey. Data were analyzed descriptively. RESULTS: Seventy-five patients were seen in the clinic, 46 (61%) were 56 years of age and above. Patients were identified as high (23%), medium (51%) or low risk (26%) for development of DU. The duration of DU history was from 7 months to 40 years. Prior to attending the nurse-led DU clinic, 90% of patients had received up to six courses of antibiotics for their DU, 76% had attended A&E, and 90% had unscheduled appointments. 90% had been seen by the GP due to DU and subsequently required hospital admissions. During the nurse-led clinic follow-up, only two patients had emergency admission. All patients reported that their needs in personal care of DU were met. CONCLUSION: There are a significant number of people with SSc who have DUs affecting their quality of life as well as needing more healthcare services. A dedicated specialist nurse-led DU clinic may improve overall care of patients.

Preliminary Validation of the Digital Ulcer Clinical Assessment Score in Systemic Sclerosis.

OBJECTIVE: To date, "healed/non-healed" and clinical judgment are the only available assessment tools for digital ulcers (DU) in patients with systemic sclerosis (SSc). The aim of our study is to examine a preliminary composite DU clinical assessment score (DUCAS) for SSc for face, content, and construct validity. METHODS: Patients with SSc presenting at least 1 finger DU were enrolled and assessed with the Health Assessment Questionnaire-Disability Index, Cochin scale, visual analog scale (VAS) for DU-related pain, patient global DU status, and global assessment as patient-reported outcomes (PRO), and physician VAS for DU status (phyGDU) as an SSc-DU expert physician/nurse measure. The DUCAS included 7 DU-related variables selected by a committee of SSc DU experts and weighted on a clinical basis. Face validity was examined by consensus and partial construct validity was tested through convergent correlation with other measures of hand function, using Spearman's correlations. A range of patients with SSc was examined. A linear regression model with backward stepwise analysis was used to determine the relationship of individual variables with the primary clinical parameter, phyGDU. RESULTS: Forty-four patients with SSc (9 males, mean age 55 ± 15 yrs, mean disease duration 9.9 ± 5.8 yrs) were enrolled in the study. Overall DUCAS showed significant positive correlations with all abovementioned PRO (r > 0.4, p < 0.01). When all scores and scales were modeled, only DUCAS significantly predicted phyGDU (r = 0.59, R2 = 0.354, Akaike information criterion = 385.4). CONCLUSION: Preliminarily, we suggest that the DUCAS may be a new clinical score for SSc-related DU, having face and content validity and convergent/divergent correlations (construct validity). These early data suggest that this score deserves further evaluation.

Management of digital vasculopathy in systemic sclerosis: benefits of multiple courses of endothelin-1 receptor antagonists.

Two patients with scleroderma and recurrent digital ulcers (DUs) were treated with bosentan for 6 months. Treatment was associated with a reduction in the number of new DUs; however, DUs recurred on treatment discontinuation. This case report illustrates the positive response of digital vasculopathy to bosentan and describes the benefits of multiple bosentan treatment courses in these patients.