Rheumatoid arthritis Patients much information on their disease as they can get

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Most people with Rheumatoid Arthritis want as much information on their disease as they can get, though many leave treatment decisions to their doctors, a UK survey suggests.

The poll of 600, mostly older, adults with Rheumatoid Arthritis found nearly universal agreement that patients should get full information on the physical effects of the disease, medication side effects and the various lab tests doctors order for them.

The large majority thought that doctors should volunteer such information, rather than wait for patients to ask. However, 22 percent said they felt their doctors had not given them enough information on rheumatoid arthritis and its treatment.

On the other hand, the survey found, a desire for information did not necessarily mean that patients wanted to take the lead in making treatment decisions. In fact, three-quarters of respondents agreed that “important medical decisions” should made by their doctors, and even more thought that a doctor should take greater control as a patient’s rheumatoid arthritis grew worse.

“Our findings add to the body of evidence that patients do want full disclosure,” according to the study authors, led by Dr. Rebecca Neame of King’s Mill Hospital in Nottinghamshire.

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At the same time, they write in the journal Arthritis & Rheumatism, patients’ desire to take the helm in treatment decisions “was strikingly low compared with the desire for information.”

Rheumatoid arthritis is a chronic, progressive disease in which the immune system mistakenly attacks the lining of the joints, creating inflammation, pain and stiffness. Over time, rheumatoid arthritis can deform the joints and lead to disability.

Past studies, Neame and her colleagues note in their report, have come to differing conclusions about patients’ desire to make their own treatment decisions. One study of people with cancer, for example, found that many wanted to be in charge, while another of adults with High Blood Pressure found that nearly two-thirds wanted to leave treatment decisions entirely up to their doctors.

These latest findings, according to the researchers, imply that a rheumatoid arthritis patient’s need for information does not necessarily indicate a need for greater control.

However, they also point out that the survey respondents were generally older—half were older than 65—and younger patients tended to want more control over their treatment.

In addition, the greater a person’s knowledge of rheumatoid arthritis, the greater the desire to be the decision-maker.

“Proactively helping to increase people’s knowledge of rheumatoid arthritis may increase their desire to be involved in decision making,” Neame and her colleagues write.

“However,” they add, “we should not forget that just as each patient has the right to make decisions, each patient also has the right to forego decision making.”

SOURCE: Arthritis & Rheumatism, April 15, 2005. 

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