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Stories for Reprint
Rheumatoid Arthritis: Adjusting to a New Diagnosis
By Erin Willis, MARRTC Staff
People newly diagnosed with rheumatoid arthritis generally want information quickly to help them adjust to living with the condition, say researchers from the Hospital for Special Surgery in New York City.
Rheumatoid arthritis is a disease that causes the immune system to attack the body's joints causing pain, stiffness and inflammation. Often, these symptoms can limit mobility or function and interfere with daily activities such as family, work and leisure. Adjusting to rheumatoid arthritis isn't only about physical challenges; it can have an emotional and mental impact, too.
"The cause of rheumatoid arthritis is unknown," says lead researcher Dayna Kurtz, social worker at the Hospital for Special Surgery. "The disease affects just over one million people in this country, from all walks of life, although three times as many women are affected, as men. In addition to the physical symptoms, the psychological impact of adjusting to a new diagnosis of RA, as with many other chronic diseases, can be challenging and life-altering. Depending on one's life stage, the ability to fulfill family, work, and social roles may be greatly affected."
In order to understand the psychological needs of people with a new diagnosis of rheumatoid arthritis, researchers conducted several different assessments. First, people with arthritis who were already participating in education and support groups were interviewed. All participants had rheumatoid arthritis for an average of 18 years and were asked what information would have helped them to adjust better to their disease upon diagnosis.
"As an initial step, we were interested in obtaining retrospective accounts from individuals with chronic rheumatoid arthritis, of what informational and coping resources they felt they needed when first diagnosed," says Kurtz. "This information provided a solid foundation for the next phase of the needs assessment; a focus group and surveys of individuals currently diagnosed with early rheumatoid arthritis, and those newly diagnosed."
Next, researchers asked participants about concerns over medications and their side effects, the unpredictable nature of the disease, fulfilling family roles and other obligations, and the need for support from others with rheumatoid arthritis.
"At the completion of each level of the needs assessment, our understanding of the psychosocial and educational needs we sought to address, was more deeply enhanced," says Kurtz.
All participants agreed that they were very interested in topics like how to cope with symptoms, new treatments, and daily living with rheumatoid arthritis.
"While there is no known cure for rheumatoid arthritis, current advances in treatment now offer greater opportunity to halt the progression of the disease, particularly with early intervention," says Kurtz. "The trend in early medical intervention shows promising results with regard to disease-impact, and the possibility of remission."
The results indicated that people with a new diagnosis of rheumatoid arthritis are in need of emotional and mental support. Education about rheumatoid arthritis must be specific to each stage of the disease and must address the psychosocial and educational needs of people newly diagnosed with the disease.
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