Background Studies have shown that persons in poverty experience worse outcomes of SLE and that the effect of poverty on outcomes is exacerbated for those living in neighborhoods with a high proportion of households in poverty. We report the results of a project to explore the viewpoint of SLE patients on how income and neighborhood affect disease outcomes.
Objectives To explore the perspective of SLE patients with SLE on the effect of income, neighborhood, and stress on outcomes: 1) How does presence or absence of money affect care for SLE and in dealing with disease? 2) What role, positive or negative, does neighborhood play in SLE care and outcomes? 3) What are specific stresses that make dealing with SLE difficult?
Methods We recruited SLE patients for qualitative interviews from a national longitudinal study of SLE conducted between 2003 and 2015. Subjects were selected to highlight the effects of income (those in the highest and lowest income quintiles), neighborhoods (living in neighborhoods with a high proportion of households in poverty vs. not), geographic diversity (four regions of the U.S.; urban, suburban, and rural residents), and range of SLE outcomes. An experienced interviewer conducted hour-long semi-structured interviews which were recorded, transcribed, and analyzed using grounded theory methods.
Results 28 qualitative interviews were completed; 11 from the highest income group and 17 from the lowest (11 from poor neighborhoods).3 were men, 20 members of racial/ethnic minorities, and mean age was 49, range 22–70. Among the poor, none cited lack of money as limiting their access to care, but all stated that it necessitated choosing which pressing needs to focus on, with food and housing a higher priority than dealing with their SLE. Among the more affluent, financial resources were used to provide help in daily chores or to withdraw from work to reduce stress and allow for more time to manage their disease. Among the poor, none cited a positive benefit of neighborhood in finding health care resources or in mitigating how they dealt with disease but all cited a negative effect of being exposed to high rates of crime, the principal stress mentioned (From a central city resident: “A good neighborhood for someone with lupus is a place where you're not robbed twice in a year inside your apartment and not raped on way home from the bus”. From a rural resident: “I don't worry about safety anymore. I sleep with a 357 Magnum”). Among the more affluent, local neighborhoods played no role in accessing care or in dealing with disease, with several stating they used professional networks not based in their neighborhood to find skilled providers or support (From a resident of suburban Phoenix: My physician's classmate in medical school was a rheumatologist at Mayo who knew someone here in Arizona”).
Conclusions Poverty forced choices in priorities, with SLE often having a lower priority than housing or food security. Exposure to crime was the stress repeatedly mentioned by the poor as exacerbating the disease. The affluent in this study indicated that they were able to reduce stress by paying for personal assistance, withdrawing from work, and using networks that extend beyond their neighborhoods to help gain access to resources. Mitigating poverty and reducing exposure to crime by helping the poor move to safer neighborhoods through housing vouchers may improve outcomes in SLE for the poor.
Disclosure of Interest None declared