Race-related preferences in lupus treatments

Lupus Foundation of America

Resource Content

What is the topic?

Upon a diagnosis of lupus, African-American patients experience lupus in a way that is unique to them, including having more organ involvement, more active disease, and lower levels of social support than whites with lupus. Previous studies indicate that racial and ethnic minorities are more likely to experience lower quality health services. In addition, in diseases such as heart disease and cervical cancer, race-related preferences in treatment choices appear to exist. However, no studies have yet examined racial/ethnic differences in treatment preferences among lupus patients.

What did the researchers hope to learn?

The researchers hoped to learn about possible differences in treatment preferences for lupus among members of different racial/ethnic patient groups, as well as demographic or clinical characteristics associated with such preferences.

Who was studied?

A total of 182 people with lupus were recruited to the study from the University of Chicago Rheumatology Clinic from November 2009 to December 2010.

The exclusion criteria included: a) age < 18 years; b) race other than African-American or white; c) history of taking cyclophosphamide; d) history of participating in an interventional clinical trial involving new medication and severe cognitive dysfunction.

How was the study conducted?

The following demographic information was obtained from telephone interviews: race/ethnicity, age, educational attainment, household income, employment status, medical insurance, and marital status. The following disease-related information was also collected during the phone interview: a) disease duration; b) lupus disease activity, as indicated by the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI); c) organ damage, as indicated by the Systemic Lupus International Collaborating Clinics Damage Index (SDI); d) co-morbid conditions, as indicated by the Charlson Comorbidity Index; and e) the number/type of major immune-suppressing drugs used.

The following personality and psychological characteristics were measured: Center for Epidemiological Studies self-reported depression scale, prayer reliance, Domain-Specific Risk Attitude Scale in health and safety, and Multidimensional Health Locus of Control.

After providing information regarding cyclophosphamide and clinical trials, agreement with the following two statements was measured:

  1. “If my lupus becomes more severe, seriously attacking my lung, heart, kidney, or brain and if my doctor recommended it, then I would be willing to receive cyclophosphamide.”
  2. “If my lupus gets worse and if my doctor recommended it, then I would be willing to participate in a lupus research clinical trial that may involve the use of a new, experimental medication.”

As an add-on, the following were also measured: a) familiarity with cyclophosphamide; b) perceptions of risk of cyclophosphamide treatment; and c) perception of effectiveness of cyclophosphamide treatment.

Participants were also asked whether they preferred seeing a rheumatologist of their own race, sex, or approximate age. Patient perceived physician decision-making, trust in physicians, and patient perceived discrimination were also measured.

Pilot testing was initially performed to determine the feasibility of receiving appropriate feedback to the survey’s format and content. An early version of the survey was used during pilot testing and was administered to volunteer lupus patients from the Lupus Foundation of America. The original version of the survey was modified appropriately based on these preliminary results.

What did the researchers find?

The study participants (n=182) were mostly African-American women, aged 41-45. White patients were more likely to have more than a high school education and to have higher incomes than African-American patients. Also, the whites were more likely to be married, currently employed, and have their own private medical insurance. The white and African-American patients did not differ, however, in terms of lupus disease activity, organ damage, disease duration, and number of immune-suppressing drugs used.

White patients were more likely than African-Americans to be willing to receive cyclophosphamide as a treatment for lupus. However, there were no racial/ethnic differences in terms of familiarity with cyclophosphamide, perception of cyclophosphamide’s risk or effectiveness, or willingness to participate in a clinical trial involving a new medication.

In terms of patient attitudes and beliefs, African-Americans were more likely than whites to believe that prayer is helpful for their lupus, to utilize prayer to cope with their disease, to believe that their health outcomes are controlled by their own internal actions and by powerful others, and to have greater trust in physicians. There were no ethnic/racial differences in perceived discrimination.

Additional analyses showed that lupus patients willing to take cyclophosphamide had significantly higher perceived effectiveness, as well as lower perceived risk of treatment, and also had significantly greater trust in physicians than those unwilling to take cyclophosphamide. Lupus patients willing to participate in a clinical trial involving an experimental medication tended to be married (as opposed to being single, divorced, or widowed), had a lower internal sense of control, and believed that having a rheumatologist of the same race or age was unimportant.

What were the limitations of the study?

Only white and African-American lupus patients were included in this study, so it is difficult to determine whether these results are generalizable to other racial/ethnic groups such as Hispanics and Asians.

What do the results mean for you?

The results show that trust in physicians and perceptions of effectiveness of cyclophosphamide were the most significant determinants of willingness to receive it. In this study, African-American patients were less willing than whites to receive cyclophosphamide. These racial/ethnic differences persisted even when differences in sociodemographic and psychosocial factors were accounted for. Patients and physicians should work in building trust in order to make optimal decisions regarding medications.

A study of racial/ethnic differences in treatment preferences among lupus patients
Vina ER, Masi CM, Green SL, Utset TO. (2012). 
Rheumatology (Oxford). 2012 May 30. doi: 10.1093/rheumatology/kes128.