OBJECTIVE: To qualitatively explore the processes through which the Chronic Disease Self-Management Program (CDSMP)-a peer-led, group-based educational intervention for people with chronic conditions-affects self-management behaviors among African American women with systemic lupus erythematosus (SLE). METHODS: Using a longitudinal pre- and postintervention design, we conducted two waves of one-on-one, semistructured interviews with 24 purposefully sampled participants. Wave 1 interviews explored self-management behaviors at baseline; wave 2 interviews focused on changes in these behaviors postintervention. Transcripts were analyzed using thematic analysis methods. RESULTS: Study participants perceived the CDSMP to be a valuable resource that helped them improve fundamental self-management behaviors, including exercise, relaxation, diet, and medication adherence. We found, with few exceptions, that in this sample, women's reported changes in self-management behaviors did not vary by participant age, education, SLE disease severity, or depression status. Our analysis suggests that the CDSMP had the most widespread perceived effects on relaxation and exercise. Strategies that generated improvements in relaxation and exercise included goal setting, action planning, encouragement to pursue low-impact physical activity, and introduction of mindfulness techniques to better manage SLE symptoms. CONCLUSION: Our findings suggest that African American women with SLE perceived the CDSMP as an effective educational self-management intervention. The program can potentially catalyze improvements in self-management behaviors in this population, regardless of demographic or disease characteristics.
Background: Patients with end-stage renal disease (ESRD) due to lupus nephritis (LN-ESRD) may be followed by multiple providers (nephrologists and rheumatologists) and have greater opportunities to receive recommended ESRD-related care. We aimed to examine whether LN-ESRD patients have better quality of ESRD care compared to other ESRD patients. Methods: Among incident patients (7/05-9/11) with ESRD due to LN (n = 6,594) vs. other causes (n = 617,758), identified using a national surveillance cohort (United States Renal Data System), we determined the association between attributed cause of ESRD and quality-of-care measures (pre-ESRD nephrology care, placement on the deceased donor kidney transplant waitlist, and placement of permanent vascular access). Multivariable logistic and Cox proportional hazards models were used to estimate adjusted odds ratios (ORs) and hazard ratios (HRs). Results: LN-ESRD patients were more likely than other ESRD patients to receive pre-ESRD care (71% vs. 66%; OR = 1.68, 95% CI 1.57-1.78) and be placed on the transplant waitlist in the first year (206 vs. 86 per 1000 patient-years; HR = 1.42, 95% CI 1.34-1.52). However, only 24% had a permanent vascular access (fistula or graft) in place at dialysis start (vs. 36%; OR = 0.63, 95% CI 0.59-0.67). Conclusions: LN-ESRD patients are more likely to receive pre-ESRD care and have better access to transplant, but are less likely to have a permanent vascular access for dialysis, than other ESRD patients. Further studies are warranted to examine barriers to permanent vascular access placement, as well as morbidity and mortality associated with temporary access, in patients with LN-ESRD.
Background: U.S. hemodialysis patients with systemic lupus erythematosus (SLE) and end-stage renal disease (ESRD) are less likely than other ESRD patients to have a permanent vascular access (fistula or graft) in place at the dialysis start. We examined whether vascular access outcomes after dialysis start differed for SLE vs. other ESRD patients.
Methods: Among U.S. patients initiating hemodialysis in 2010 with only a catheter (n = 40,911; 384 with SLE) and using a permanent access on first dialysis (n = 13,073; 48 with SLE), we examined the association of SLE status with time to first placement of a permanent access (among catheter-only patients) and to loss of access patency (among patients using a permanent access on first dialysis), both censored 1 year after dialysis start, using multivariable Cox proportional hazards models.
Results: Among catheter-only patients, 46.1 % vs. 54.5 % of those with SLE-ESRD vs. other ESRD had a permanent access placed within 1 year after dialysis start. However, with adjustment, there was no association of 1-year placement with SLE status [HR = 1.00 (95 % CI, 0.86-1.17)]. SLE-ESRD vs. other ESRD patients starting dialysis with a permanent access were less likely to experience a 1-year loss of patency (43.8 % vs. 55.0 %), but this association was not statistically significant after adjustment [HR = 0.88 (0.57-1.37)].
Conclusion: These results suggest that SLE-ESRD patients starting dialysis with a catheter are not more likely to have a permanent access placed in the first year of dialysis, despite an observed lack of association of SLE status with subsequent loss of vascular access patency among those starting dialysis with a permanent access.
BACKGROUND: Healthcare access, utilization, and quality play critical roles in shaping mortality and morbidity among patients diagnosed with systemic lupus erythematosus (SLE), and yet healthcare access, utilization, and quality can be suboptimal for many people living with SLE. The aim of this qualitative study was to explore the perceived impact of a peer-led, group-based educational intervention (the Chronic Disease Self-Management Program [CDSMP]) on healthcare engagement behaviors among African American women with SLE.
METHODS: Participants were recruited from the WELL (Women Empowered to Live with Lupus) study, a behavioral trial of the effectiveness of the CDSMP on African American women diagnosed with SLE. We conducted two waves of qualitative, one-on-one, semi-structured interviews with 24 purposively sampled WELL participants; one interview was conducted before CDSMP participation and one after. Wave 1 interviews explored health service use behaviors at baseline; Wave 2 interviews focused on changes in these behaviors post-intervention and women's perceptions of whether and how the CDSMP shaped these changes. Transcripts were analyzed using thematic analysis methods.
RESULTS: Study participants perceived the CDSMP to be a valuable resource for supporting two distinct health service use behaviors: communicating with doctors (N = 16 [88.9%]) and managing medication side effects (N = 17 [41.2%]). Women perceived that the CDSMP had the most potent and widespread effects on patients' communication with doctors. Strategies that women believed generated improvements in patient-doctor communication included enhancing preparation for appointments and boosting patient participation during doctor's visits. Women's reported post-CDSMP improvements in health service use behaviors varied by disease severity and depression. Insurance coverage, while not probed directly during baseline interviews, emerged organically as a key factor affecting health service use behaviors; the CDSMP did not seem to improve participants' ability to circumvent insurance-related barriers to accessing care.
CONCLUSIONS: Our findings suggest that the CDSMP may help enhance healthcare service utilization among African American women with SLE by improving doctor/patient communication and medication side effect management. If future research confirms this conclusion, African American women living with SLE should be encouraged to participate in CDSMP workshops to enhance health service use behaviors. TRIAL REGISTRATION: NCT02988661 . Registered 12/07/2016.
Purpose of review: The current review focuses on recent population-based studies that have examined the burden of lupus, disease outcomes, and gaps in quality of care, with an emphasis in research addressing health disparities.
Recent findings: The Centers for Disease Control and Prevention National Lupus Registries underscored higher susceptibility of both systemic lupus erythematosus (SLE) and primary cutaneous lupus among people of color, compared with whites. Not only does SLE disproportionately strike people from racial and ethnic minorities, those individuals are also at increased risk of developing severe manifestations following SLE diagnosis. Mortality is higher and death occurs at a younger age among blacks, compared with whites. Furthermore, ongoing Centers for Disease Control and Prevention-supported population-based lupus cohorts, along with research by other groups, have provided new insight into the role of social determinants on outcomes and opportunities to improve care in diverse lupus populations.
Summary: While descriptive epidemiological efforts have been critical to providing more accurate estimates of the burden and mortality of lupus across diverse demographic groups, emerging research suggests a significant influence of psychosocial and healthcare system factors on disease outcomes. These current efforts represent important steps toward the development of clinical and public health interventions aimed at eliminating health disparities in lupus populations.
Systemic lupus erythematosus (SLE) is a chronic, systemic autoimmune disease with often nonspecific symptoms that can lead to a delay in diagnosis. The disease disproportionately affects women and minorities. Blacks with SLE also have more severe disease and develop it at an earlier age (1). Despite an increase in the 5-year survival rate from 50% in 1955 to approximately 90% in the 2000s, attributed largely to advances in management of SLE (2), premature mortality among SLE patients persists, often as a result of disease severity, infections, and cardiovascular disease. Because existing SLE mortality estimates based on death certificate data are known to underestimate SLE deaths (3), SLE mortality was analyzed using 2002-2004 data from the population-based Georgia Lupus Registry (1). Incident and prevalent SLE cases matched to the National Death Index through 2016 identified 97 and 401 deaths, respectively. Standardized mortality ratios adjusted for age group, sex, and race were two to three times higher among persons with SLE relative to expected deaths in the general population. Blacks had significantly higher cumulative mortality than did whites, and blacks with both incident and prevalent cases were significantly younger at death (mean age 51.8 and 52.3 years, respectively) than were whites (mean age 64.4 and 65.0 years, respectively). Whites had lower mortality after diagnosis than did blacks; among incident cases, mortality among whites did not occur until 5 years after SLE diagnosis, whereas blacks had significantly and persistently higher mortality from the time of diagnosis. There were no significant differences by sex. Current CDC-supported efforts encourage early detection, diagnosis, and treatment, and enhanced self-management skills to mitigate racial disparities and improve outcomes overall among persons with SLE.
Objective: To describe end-stage renal disease (ESRD) quality of care (receipt of pre-ESRD nephrology care, access to kidney transplantation, and placement of permanent vascular access for dialysis) in US patients with ESRD due to lupus nephritis (LN-ESRD) and to examine whether quality measures differ by patient sociodemographic characteristics or US region. Methods: National surveillance data on patients in the US in whom treatment for LN-ESRD was initiated between July 2005 and September 2011 (n = 6,594) were analyzed. Odds ratios (ORs) and hazard ratios (HRs) with 95% confidence intervals (95% CIs) were determined for each quality measure, according to sociodemographic factors and US region. Results: Overall, 71% of the patients received nephrology care prior to ESRD. Black and Hispanic patients were less likely than white patients to receive pre-ESRD care (OR 0.73 [95% CI 0.63-0.85] and OR 0.73 [95% CI 0.60-0.88], respectively) and to be placed on the kidney transplant waitlist within the first year after the start of ESRD (HR 0.78 [95% CI 0.68-0.91] and HR 0.82 [95% CI 0.68-0.98], respectively). Those with Medicaid (HR 0.51 [95% CI 0.44-0.58]) or no insurance (HR 0.36 [95% CI 0.29-0.44]) were less likely than those with private insurance to be placed on the waitlist. Only 24% had a permanent vascular access, and placement was even less likely among the uninsured (OR 0.62 [95% CI 0.49-0.79]). ESRD quality-of-care measures varied 2-3-fold across regions of the US, with patients in the Northeast and Northwest generally having higher probabilities of adequate care. Conclusion: LN-ESRD patients have suboptimal ESRD care, particularly with regard to placement of dialysis vascular access. Minority race/ethnicity and lack of private insurance are associated with inadequate ESRD care. Further studies are warranted to examine multilevel barriers to, and develop targeted interventions to improve delivery of, care among patients with LN-ESRD.
Objective: To estimate and identify factors associated with incidence of all-cause end-stage renal disease (ESRD) among newly diagnosed systemic lupus erythematosus (SLE) patients.
Methods: Data from a national registry of treated ESRD were linked to data from a lupus registry of SLE patients who were newly diagnosed and living in Atlanta, Georgia, in 2002-2004 (median follow-up, 7.8 years). Cumulative incidence and incidence rates (ESRD treatment initiations per 1000 patient-years) were calculated, and age- and race-adjusted Poisson models were used to calculate incidence rate ratios (IRRs).
Results: Among 344 newly diagnosed SLE patients, 29 initiated ESRD over 2603.8 years of follow-up. Incidence rates were 13.8 (95% CI, 9.4-20.3) and 3.3 (95% CI, 0.8-13.0) per 1000 patient-years among black and white patients, respectively; corresponding 5-year cumulative incidence was 6.4% and 2.5%. Lupus nephritis documented prior to 2005, which occurred in 80% of those who progressed to ESRD, was the strongest risk factor for incident ESRD (IRR=6.7, 95% CI, 2.7-16.8; incidence rate=27.6 per 1000 patient-years). Results suggested that patients who were black vs. white (IRR=3.9, 95% CI, 0.9-16.4) or <18 years (vs. ≥30 years) at diagnosis (IRR=2.1, 95% CI, 0.9-5.3) may be more likely to progress to ESRD, but incidence did not differ by sex or other characteristics.
Conclusion: Incidence of all-cause ESRD among patients with a recent diagnosis of SLE is high in Georgia. Interventions to decrease ESRD incidence among newly diagnosed SLE patients should target young and black patients as well as patients with lupus nephritis.
Objective: Relative to studies of systemic lupus erythematosus (SLE), epidemiologic studies of chronic cutaneous lupus erythematosus (CCLE) are rare and are limited to populations with no racial diversity. We sought to provide minimum estimates of the incidence of primary CCLE (CCLE in the absence of SLE) in a population comprised predominantly of white individuals and black individuals in the southeastern region of the US.
Methods: The Georgia Lupus Registry allowed for the use of multiple sources for case-finding, including dermatology and rheumatology practices, multispecialty health care facilities, and dermatopathology reports. Cases with a clinical or clinical/histologic diagnosis of CCLE were classified as definite. Cases ascertained exclusively from dermatopathology reports were categorized as probable. Age-standardized incidence rates stratified by sex and race were calculated for discoid lupus erythematosus (DLE) in particular and for CCLE in general.
Results: The overall age-adjusted estimates for combined (definite and probable) CCLE were 3.9 per 100,000 person-years (95% confidence interval [95% CI] 3.4–4.5). The overall age-adjusted incidences of definite and combined DLE were 2.9 (95% CI 2.4–3.4) and 3.7 (95% CI 3.2–4.3) per 100,000 person-years, respectively. When capture–recapture methods were used, the age-adjusted incidence of definite DLE increased to 4.0 (95% CI 3.2–4.3). The black:white and female:male incidence ratios for definite DLE were 5.4 and 3.1, respectively.
Conclusion: Our findings underscore the striking racial disparities in susceptibility to primary CCLE, with black individuals having a 3-fold to 5-fold increased incidence of CCLE in general, and DLE in particular, compared with white individuals. The observed sex differences were consistent with those reported previously, with a 3 times higher risk of DLE in women compared with men.