This subproject is one of many research subprojects utilizing the resources provided by a Center grant funded by NIH/NCRR. The subproject and investigator (PI) may have received primary funding from another NIH source, and thus could be represented in other CRISP entries. The institution listed is for the Center, which is not necessarily the institution for the investigator. A program is proposed to provide 'hands-on' experience to rheumatologists with patient questionnaires in standard clinical care, in order to advance inclusion of quantitative data at every rheumatology visit. Patients can complete simple 1-4 page questionnaires as a part of standard rheumatology care. In patients with rheumatoid arthritis (RA), data from patient self-report questionnaires are as informative to document and predict functional declines, work disability, costs, and premature mortality. In clinical trials, an index of three patient questionnaire measures - functional status, pain, and global status - has been found as effective as traditional measures, 20% improvement in the American College of Rheumatology (ACR) Core Data Set (ACR 20) or Disease Activity Score (DAS) to distinguish between active versus placebo treatment (20;21). Despite extensive documentation of the value and feasibility of patient questionnaires in standard care, patient questionnaires generally are used only in clinical trials and other clinical research. Most rheumatologists have not incorporated patient questionnaires (or joint counts or any quantitative measurement other than laboratory tests) into standard care. Some barriers include: 1) a traditional perspective that information provided by a patient is 'subjective' and of considerably lesser value than 'objective' data from a physical examination, radiograph, and laboratory tests collected by a physician and other health professionals, 2) limited training and unfamiliarity with patient questionnaires, 3) confusion over which questionnaire to use, 4) inexperience in managing questionnaire data. This program is designed to overcome some of these barriers, by providing individual clinicians with an opportunity to gain experience with patient questionnaires in their own clinical care.
The specific aims of the proposed program are as follows: 1) Establish a database of all rheumatology patients seen at HJD. 2) Establish a methodology of giving outpatient questionnaires as part of routine care at HJD clinics and physician's offices. 3) Provide researchers with a database of patients with different diseases and help identify patients who may be interested in clinical trials. The study population will consist of all consecutive rheumatology patients seen at HJD clinics and physician offices. All adult patients with a rheumatologic condition seen at HJD will be invited to participate. There will be no exclusion criteria. A 4-page patient questionnaire for new patients and a 2 page questionnaire for follow-up visits, which includes MHAQ questionnaire for functional status, pain, global status, fatigue, psychological distress, morning stiffness, change in status, a self-report RADAI joint count, work status, and questions about life style choices such as smoking and physical exercises will be completed by all patients. The data will be anonymized for use in the research database.
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