Studies have shown that disagreements among arthritis patients and clinicians on a patient’s progress lead doctors to neglect key issues and symptoms, resulting in diminished patient satisfaction. Patient perspectives in outcome assessments, suggesting the addition of functional priority questions in regular evaluations with the aim of improving care and health status in rheumatoid arthritis (RA), were first introduced in 2002 at the sixth annual conference for Outcomes Measures in Rheumatology Clinical Trials. There is, however, little research on the most effective way to incorporate patient-centered evaluation into regular office practice. A BWH-directed initiative has been designed to address this issue and to determine how best to implement the patient-centered methodology. The Foundation is providing a grant of more than $1 million over four years for this project.

As of September 2006, three patient focus group sessions had been held. The groups gather RA patients to discuss their experiences with RA and their priorities for care. All three groups discussed the impact symptoms of RA have on completing daily activities. They also expressed a fear of the future as it relates to their RA and were concerned about their ability to continue working or taking care of children. In general, participants reported that their rheumatologists were responsive, accessible and supportive. On the other hand, the patients asked for more time with their physicians during clinical visits and more information about their disease and how to manage it. Next steps are to conduct physician focus groups and then develop and test interventions such as patient support groups and patient education programs as well as to help facilitate better communication between patients and doctors during and between appointments.

A $400,000 grant over three years will help develop and disseminate an early diagnosis screening tool and quick referral mechanism for use by primary care physicians with rheumatoid arthritis patients. Currently this form of arthritis affects about 1 percent of the American adult population, with women representing about 75 percent of those affected. New treatments offer better outcomes for patients, but if left untreated, RA can cause significant disability and pain, even early death. Therefore early diagnosis and treatment is critical. The Arthritis Foundation (AF) has identified timely diagnosis and treatment of persons with early rheumatoid arthritis as key areas of concern that limit the dissemination of proven therapies to this population, thus hampering disease control efforts. Reducing the referral times by days, weeks, or months has the potential to significantly reduce the impact of RA on the individual. A simple screening tool and education program about the importance of early diagnosis and treatment for primary care physicians is needed to facilitate the detection of early onset inflammatory arthritis.

The screening tool—similar to those assessing risk for coronary artery disease that consist of patient symptoms, physical findings, and simple laboratory tests and x-rays—would identify those who are most likely to have inflammatory arthritis and who would benefit from a referral to an arthritis specialist to be evaluated for early treatment. In addition, this screening tool will allow rheumatologists to set aside time to see those people with probable RA who need prompt evaluation. Currently the waiting time for a rheumatologist is over three months in some areas of the U.S. This screening tool will assist the primary care and rheumatology communities to offer timely new patient visits to people with probable RA.

The screening tool will be developed by drawing on the scientific leadership in rheumatology of the AF and American College of Rheumatology and the expertise in women's health of the National Women's Health Resource Center and others. It will be implemented in two-three pilot sites, evaluated and then optimized for dissemination through a physician education program.