Access to quality healthcare is a challenge for minority and disadvantaged groups in the U.S. Systemic lupus erythematosus (lupus), a complex autoimmune disease, can cause nephritis and, in severe cases, end-stage renal disease. Lupus nephritis is a potentially preventable outcome that disproportionately afflicts vulnerable groups: women, racial and ethnic minorities, the poor, those lacking medical insurance and education, and children and the elderly. We have found that the incidence of lupus end- stage renal disease rose dramatically from 1995-2004 in the U.S., in particular among those 20-39 years old, women, and racial and ethnic minorities. More new cases now occur among Blacks than whites. The causes of these growing disparities are unknown. We hypothesize that multiple barriers to quality healthcare for lupus nephritis exist for disadvantaged patients and are responsible for premature, excess, and avoidable morbidity and mortality. Our goals are to identify and prioritize potentially remediable barriers to healthcare access for lupus nephritis and end-stage renal disease, leading to both future research and policy interventions. Our uniquely qualified interdisciplinary research team will address nationwide socio-demographic variation in lupus nephritis healthcare and the potentially modifiable factors responsible for outcome disparities. We will constitute two nationwide cohorts: one with >5000 patients with incident lupus nephritis from 2000-2004, and a second with >14,000 patients with incident lupus end-stage renal disease from 1995-2009 and investigate the factors that contribute to access to care and disparities. We have developed a conceptual model for understanding the determinants of health disparities in lupus nephritis and posit that potentially modifiable factors, such as subspecialist care, provider and medical center volume, medical insurance, and adherence to therapy, contribute to long-term outcomes in lupus nephritis, including the development of end-stage renal disease and death. Lupus patients from the affected communities will likely have great insight into our findings and should be involved in the development of strategies for overcoming observed barriers. We will perform focus groups of community lupus patients and investigate the barriers to quality healthcare for lupus nephritis and end-stage renal disease from patients'perspectives. The multidisciplinary research team will be composed of investigators with expertise in healthcare disparities research, biostatistics, pharmaco-epidemiology, administrative claims data, lupus epidemiology and quantitative research methodologies. The findings will be widely disseminated to the lupus community, physicians and healthcare workers. The results will provide guidance to clinicians and policy makers on strategies to reduce barriers and improve access to care and outcomes for all Americans with lupus nephritis.

Public Health Relevance

Lupus is an autoimmune disease that mainly afflicts disadvantaged groups in the U.S., often causing kidney failure. The reasons why some groups suffer worse outcomes are not known. We will investigate how differences in healthcare access are related to """"""""gaps"""""""" in outcomes for lupus kidney disease.

Agency
National Institute of Health (NIH)
Institute
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Type
Research Project (R01)
Project #
5R01AR057327-03
Application #
8130651
Study Section
Special Emphasis Panel (ZRG1-RPHB-K (50))
Program Officer
Tonkins, William P
Project Start
2009-09-15
Project End
2014-08-31
Budget Start
2011-09-01
Budget End
2012-08-31
Support Year
3
Fiscal Year
2011
Total Cost
$408,645
Indirect Cost
Name
Brigham and Women's Hospital
Department
Type
DUNS #
030811269
City
Boston
State
MA
Country
United States
Zip Code
02115
Roberts, Andrea L; Malspeis, Susan; Kubzansky, Laura D et al. (2017) Association of Trauma and Posttraumatic Stress Disorder With Incident Systemic Lupus Erythematosus in a Longitudinal Cohort of Women. Arthritis Rheumatol 69:2162-2169
Feldman, Candace H; Marty, Francisco M; Winkelmayer, Wolfgang C et al. (2017) Comparative Rates of Serious Infections Among Patients With Systemic Lupus Erythematosus Receiving Immunosuppressive Medications. Arthritis Rheumatol 69:387-397
Broder, Anna; Mowrey, Wenzhu B; Izmirly, Peter et al. (2017) Validation of Systemic Lupus Erythematosus Diagnosis as the Primary Cause of Renal Failure in the US Renal Data System. Arthritis Care Res (Hoboken) 69:599-604
Barbhaiya, Medha; Lu, Bing; Sparks, Jeffrey A et al. (2017) Influence of Alcohol Consumption on the Risk of Systemic Lupus Erythematosus Among Women in the Nurses' Health Study Cohorts. Arthritis Care Res (Hoboken) 69:384-392
Parks, Christine G; de Souza Espindola Santos, Aline; Barbhaiya, Medha et al. (2017) Understanding the role of environmental factors in the development of systemic lupus erythematosus. Best Pract Res Clin Rheumatol 31:306-320
Feldman, Candace H; Broder, Anna; Guan, Hongshu et al. (2017) Sex Differences in Healthcare Utilization, End-stage Renal Disease and Mortality among Medicaid Beneficiaries with Incident Lupus Nephritis. Arthritis Rheumatol :
Hiraki, Linda T; Feldman, Candace H; Marty, Francisco M et al. (2017) Serious Infection Rates Among Children With Systemic Lupus Erythematosus Enrolled in Medicaid. Arthritis Care Res (Hoboken) 69:1620-1626
Barbhaiya, Medha; Feldman, Candace H; Guan, Hongshu et al. (2017) Race/Ethnicity and Cardiovascular Events Among Patients With Systemic Lupus Erythematosus. Arthritis Rheumatol 69:1823-1831
Tedeschi, Sara K; Barbhaiya, Medha; Malspeis, Susan et al. (2017) Obesity and the risk of systemic lupus erythematosus among women in the Nurses' Health Studies. Semin Arthritis Rheum 47:376-383
Tedeschi, Sara K; Guan, Hongshu; Fine, Alexander et al. (2016) Organ-specific systemic lupus erythematosus activity during pregnancy is associated with adverse pregnancy outcomes. Clin Rheumatol 35:1725-32

Showing the most recent 10 out of 28 publications