To enroll in the NDB, a patient first fills out a preliminary, two-page questionnaire with items on basic functional status. Once enrolled in the database, the patient completes the NDB Comprehensive Survey Questionnaire (CSQ) every six months. The CSQ is a large 28-page form with questions ranging from marital status to recent infectious diseases to any diagnostic tests the patient may have undergone over the previous half-year. It includes detailed questions about medications, including brand names, costs, and side effects, as well as employment questions (including income).
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The key questions, which cover several pages, concern functional status. Questions ask about symptoms, joint pain, and the ability to perform basic tasks such as performing household chores, bathing, and opening car doors. “Functional status is the best predictor of a patient’s prognosis,” explains Dr. Wolfe.
The result of this mass of data is a comprehensive picture of the patient’s health and function at any given moment. Viewed over time, the questionnaires also show how patients improve or deteriorate and confirm the waxing and waning nature of many rheumatic diseases.
Should the full CSQ prove too onerous for patients, a six-page version, or Brief Survey Questionnaire is also available. Patients can mail or fax in their completed questionnaires, or they can answer them in a secure area on the Internet. The NDB makes all of its standard questionnaires available on its Web site at www.arthritis-research.org. About a third of patients complete their questionnaires on the Internet.
It takes a staff of 27 people to enter, analyze, coordinate, validate, and follow up on all of these data, often using one of the more than 1,000 software programs the NDB has developed specifically to analyze its information. The forms are scanned into the computer and verified. Whenever they detect a discrepancy or missing data, staff members must contact the patient for clarification. Patient reports of major medical events like a myocardial infarction or a bout with pneumonia are verified independently by contacting the hospital, clinic, or nursing home where the patient was treated. “Verifying patient information is responsible for our major operating cost,” says Dr. Wolfe.
Funding the Data Bank
The NDB is a nonprofit organization, and its questionnaires and findings are available to any physician or investigator who wishes to use the information in his or her research, as long as the findings are published in a peer-reviewed journal. The NDB does not sell mailing lists, and Dr. Wolfe maintains strict prohibitions against using any of the data for advertising or marketing.