care for Lupus

Have you seen a rheumatologist lately?

Tuesday, March 25, 2008

What is the topic?

Although a number of studies have found that specialty care is associated with improved outcomes, there are reports that certain groups of lupus patients -- especially the elderly and African American women often do not have even annual visits with a rheumatologist. That may contribute, in part, to the more severe manifestations of disease seen in African Americans with lupus. Little is known about the use of rheumatology services by other groups of lupus patients (e.g., younger patients, other ethnic minority group members) or how the use of specialists relates to the type of medical insurance a lupus patient may or may not have.

What did the researchers hope to learn?

The researchers wanted to examine the socioeconomic and/or demographic factors that might affect lupus patients’ use of rheumatology physician services. The primary outcome was whether or not patients had seen a rheumatologist at least once in the prior 12 months. The researchers also sought to determine what kind of physicians (e.g., family practice physicians, internists, rheumatologists, other specialists) were primarily responsible for managing lupus patients’ care.

Who was studied?

The participants in this study were already part of the Lupus Outcomes Study (LOS), which has been following nearly 1,000 English-speaking patients with lupus over a number of years. This study included 867 people with lupus, more than 91% of whom were women. The racial/ethnic backgrounds of the study participants, as self-identified by the subjects, were: Caucasian (69%), Hispanic/Latino (11%), African American (8%), Asian/Pacific Islander (10%), and some other race/ethnicity (2%).

How was the study conducted?

Trained survey workers conducted hour-long telephone interviews with the study participants. They collected data on age, sex, disease status, race/ethnicity, income, education, type of health insurance, and how they had come to participate in the LOS (either through a referral from a rheumatology practice or community outreach). The results were analyzed to weigh the relative impact of different variables.

What did the researchers find?

The researchers found that older participants, males, and those with lower incomes were less likely to visit a rheumatologist, even after taking other variables into account such as race/ethnicity, health insurance, and disease status. They guessed that this underuse of rheumatology services was probably caused by barriers to accessing care, such as lack of rheumatologists nearby, lack of awareness of rheumatology expertise, less frequent referrals to rheumatologists, or inadequate follow-up by rheumatologists once care is established.
The researchers did not find a discrepancy in specialty care use by race/ ethnicity in this study, a finding that contrasted with a prior study that showed African Americans with lupus had significantly fewer rheumatology visits compared with Caucasians.

What were the limitations of the study?

The participants in this study were not randomly selected, but rather had already been enrolled in the LOS. It is possible that the respondents may have had increased access to care compared to lupus patients in general; in particular, study participants identified as members of ethnic/racial minorities were more likely to have been recruited for the original study from rheumatology practices. Also, the study relied on self-reported medical histories, which are not as reliable as detailed clinical information, and this could have masked important differences about the severity of disease in the different groups.

What do the results mean for you?

The study results point to the need for greater access to rheumatology specialty care for particular groups of lupus patients. In many patients, lupus symptoms may become less severe as they grow older, and this may account in part for why older lupus patients are less likely to see a rheumatologist. However, this is not true for all patients, and some of these patients may still need the particular expertise of physicians who have special training in the management of lupus.

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Labels: demographic, socioeconomic, systemic lupus erythematosus, utilization of rheumatology subspecialty