Poverty, Neighborhoods, Persistent Stress, and Systemic Lupus Erythematosus Outcomes: A Qualitative Study of the Patients' Perspective.

Abstract

To obtain the perspective of individuals with systemic lupus erythematosus (SLE) regarding the role of poverty, neighborhood, and chronic stress in SLE outcomes. Through annual structured interviews as part of the Lupus Outcomes Study, 723 persons with SLE were followed from 2003 to 2015 in order to establish the effect of combinations of poverty, persistent poverty, residence in an area of concentrated poverty, access to health care, and chronic stress on accumulated damage. We obtained a sample of 28 of the 723 individuals on the basis of household income, geography, and outcomes in their last interview, and administered qualitative interviews to explore their perspectives on the impact of these factors on SLE outcomes. The interviews were recorded, transcribed, and analyzed using a grounded theory approach. Persons in poverty frequently reported that poverty necessitated a choice to deal with food, medical care, and housing insecurity on a daily basis and to relegate their management of SLE to occurrences of disease flares. They also reported that exposure to crime in their neighborhoods was a stressor that triggered worse disease activity. Affluent participants reported that neighborhood neither helped nor hindered dealing with SLE, because they relied on networks not tied to neighborhoods to deal with SLE. Mitigating poverty and reducing exposure to crime through moving to safer neighborhoods are factors identified by individuals with SLE as potentially critical in disease outcomes.