The quality of life of minority women in the United States with lupus: Assessment by an internet based survey
Systemic lupus erythematosus (SLE or lupus) is an autoimmune disease with multi-system involvement. Health-related quality of life (HRQOL) is a multidimensional concept that encompasses all aspects of life that directly affects a person’s mental and/or physical health. Research has shown that HRQOL among all patients is similar to other chronic disease patients such as acquired immune deficiency syndrome (AIDS) and cancer. SLE disproportionately affects women of reproductive age. Latina/Hispanic and African-Americans experience even greater disparities in the severity, morbidity, and mortality of lupus. The main objective of this study was to assess and compare the HRQOL, access to care, treatment history, and resources utilized among minority women with SLE in the United States. An internet survey was developed with items necessary to assess the objectives of the study. The HRQOL was measured using the validated instrument, LupusPROTM. The recruitment strategy utilized a combination of methods, which was comprised of social networking sites, a lupus organization website, patient registry, and email communication. Participants were a diverse and representative sample (N = 96). Significant age (p = .013) and geographical (p .001) differences observed between both groups. There was no statistically significant difference in the mean total HRQOL score between the Latina/Hispanic (62.8) and African-American (59.4) participants. However, significant differences were observed within the HRQOL lupus symptoms (p= .002) and procreation (p= .017) domains. African-American participants differed significantly in ‘ever receiving treatment’ (p=.002) and use of plaquenil (p=.032) from their Latina/Hispanic counterparts. Insurance status, comorbidity, and menstruation status were statistically significant, individually and combined, in the logistic regression model. The social networking site Instagram was found to be the most effective recruitment strategy for both populations. Chronic illness has become more prevalent in the United States. Measuring the HRQOL provides additional information that can provide a better understanding of the disease or populations it effects. This study demonstrated an effective strategy to recruit and disseminate a survey to assess HRQOL in minority women with lupus in the United States. The findings of this study will provide insight on the development of future innovative solutions to the issues experienced among this population.
Social research|Medicine|Public health
Harding, Angelique, "The quality of life of minority women in the United States with lupus: Assessment by an internet based survey" (2015). Texas Medical Center Dissertations (via ProQuest). AAI10046735.