Psychosocial dimensions of SLE: implications for the health care team

BACKGROUND The purpose of this exploratory study was threefold, ie, to clarify the unique psychosocial challenges facing those living with systemic lupus erythematosus (SLE), to distinguish which sociodemographic variables impact the lives of SLE patients, and generate knowledge regarding the way patients perceive SLE medication regimens. METHODS This was a cross-sectional exploratory study in 378 patients diagnosed with SLE and receiving services from the SLE Lupus Foundation in New York City. In addition to sociodemographic variables, the instrument used consisted of two scales, ie, the Systemic Lupus Erythematosus Needs Questionnaire (SLENQ) and the Multidimensional Health Locus of Control Scale, as well as questions regarding subjective perceptions of side effects from SLE medication. RESULTS The highest general cause of self-reported depressive and anxious feelings was changes in appearance due to SLE, and limitations in physical abilities due to SLE (primarily from muscle and joint pain). The higher the sense of control over SLE, the less likely respondents were to report feeling depressed and anxious. African-American and Hispanic SLE patients reported a higher level of unmet psychological needs due to SLE than did their other ethnic counterparts. Weight gain and hair loss were the most likely medication side effects and also the most likely causes of SLE-related depression and anxiety. CONCLUSION Those living with SLE are at risk for feelings of depression and anxiety. African-American and Hispanic women are at higher risk for these emotional states. Comprehensive assessment across the disciplines should screen this group of patients for depression and anxiety, and be prepared to refer them to patient education and social work counseling as indicated.