139 research outputs found
Ten years of METEOR (an international rheumatoid arthritis registry): development, research opportunities and future perspectives
OBJECTIVES: Ten years ago, the METEOR tool was developed to simulate treatment-to-target and create an international research database. The development of the METEOR tool and database, research opportunities and future perspectives are described. METHODS: The METEOR tool is a free, online, internationally available tool in which daily practice visits of all rheumatoid arthritis patients visiting a rheumatologist can be registered. In the tool, disease characteristics, patient- and physician-reported outcomes and prescribed treatment could be entered. These can be subsequently displayed in powerful graphics, facilitating treatment decisions and patient-physician interactions. An upload facility is also available, by which data from local electronic health record systems or registries can be integrated into the METEOR database. This is currently being actively used in, among other countries, the Netherlands, Portugal and India. RESULTS: Since an increasing number of hospitals use electronic health record systems, the upload facility is being actively used by an increasing number of sites, enabling them to benefit from the benchmark and research opportunities of METEOR. Enabling a connection between local registries and METEOR is a well established but time-consuming process for which an IT-specialist of METEOR and the local registry are necessary. However, once this process has been finished, data can be uploaded regularly and relatively easily according to a pre-specified format. The METEOR database currently contains data from >39,000 patients and >200,000 visits, from 32 different countries and is ever increasing. Continuous efforts are being undertaken to increase the quality of data in the database. CONCLUSIONS: Since METEOR was founded 10 years ago, many rheumatologists worldwide have used the METEOR tool to follow-up their patients and improve the quality of care they provide to their patients. Combined with uploaded data, this has led to an extensive growth of the database. It now offers a unique opportunity to study daily practice care and to perform research regarding cross-country differences in a large, worldwide setting, which could provide important knowledge about disease and its treatment in different geographic and clinical settings
Role of rheumatology clinical nurse specialists in optimizing management of hand osteoarthritis during daily practice in secondary care: an observational study
Wing-Yee Kwok, Margreet Kloppenburg, Liesbeth JJ Beaart-van de Voorde, Tom WJ Huizinga, Thea PM Vliet VlielandDepartment of Rheumatology, Leiden University Medical Center, Leiden, The NetherlandsBackground: The purpose of this study was to describe the effectiveness of a single one-hour consultation by a clinical nurse specialist in patients with hand osteoarthritis during daily rheumatology practice in secondary care.Methods: Consecutive patients diagnosed by rheumatologists to have primary hand osteoarthritis and referred to the clinical nurse specialist were eligible for entry into this study. The standardized 1-hour consultation consisted of assessments and education on hand osteoarthritis by a clinical nurse specialist. Before and 3 months after the consultation, assessments were done to evaluate treatment (use of assistive devices, acetaminophen), health-related quality of life (physical component summary [PCS] score of Short-Form 36), and hand pain/function (Australian/Canadian Osteoarthritis Hand Index [AUSCAN]). Paired t-tests and McNemar tests were used to analyze differences between baseline and follow-up. Satisfaction was measured after consultation at follow-up using a multidimensional questionnaire comprising 13 items (rated on a four-point scale).Results: A total of 439 patients were referred, with follow-up data available for 195 patients, comprising 177 (87%) females, and of mean age 59 ± 9.0 years. After consultation, the proportions of patients using assistive devices and/or acetaminophen increased significantly from 30% to 39% and from 35% to 49%, respectively. PCS improved significantly (P = 0.03) whereas AUSCAN hand pain/function showed no significant differences compared with baseline (P values 0.52 and 0.92, respectively). The proportions of patients reporting to be satisfied or fully satisfied ranged from 78% to 99% per item.Conclusion: A single, comprehensive, standardized assessment and education by a clinical nurse specialist improved the physical dimension of health-related quality of life in hand osteoarthritis. Most patients were satisfied with the consultation. Further controlled trials are needed to determine the added value of the clinical nurse specialist in care for hand osteoarthritis.Keywords: hand osteoarthritis, nursing, quality of life, satisfactio
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