Arthritis patients want info, not decision-making

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Arthritis patients want info, not decision-making

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. Neame

of King's Mill Hospital in Nottinghamshire.

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.