The Effect of Psychosocial and Neuropsychiatric Factors on Medication Adherence in a Cohort of Women With Systemic Lupus Erythematosus.

BACKGROUND: Medication adherence in systemic lupus erythematosus (SLE) reduces disease activity and the risk of flares. OBJECTIVES: We evaluated adherence in women with SLE who exhibit high morbidity and mortality. We evaluated demographic data and 2 conventional adherence predictors: self-efficacy and health literacy, along with 2 potential neuropsychiatric SLE complications: cognitive dysfunction and depression. METHODS: One hundred six women randomly selected from the Barbados National Lupus Registry completed the Self-efficacy for Appropriate Medication Use Scale, Rapid Estimate of Adult Literacy in Medicine-Short Form, Cognitive Symptom Inventory, Beck Depression Inventory II, and Morisky's Medication Adherence Questionnaire (MAQ). This study explored the effects of psychosocial and neuropsychiatric functioning on adherence using ordinal logistic regression. RESULTS: Sixty percent reported high MAQ scores. The probability of high MAQ scores was lower among younger patients (P = 0.001) and those with shorter disease duration (P = 0.05). The probability of high MAQ scores fell with lower perceived self-efficacy (odds ratio [OR], 0.80; 95% confidence interval [CI], 0.73-0.89; P < 0.001), worsening cognitive function (OR, 0.90; 95% CI, 0.84-0.97; P = 0.004), and increasing depression (OR, 0.93; 95% CI, 0.88-0.97; P = 0.002). There was no strong relationship between MAQ score and health literacy (OR, 0.37; 95% CI, 0.13-1.03; P = 0.06). CONCLUSION: Women with SLE who are younger and those with shorter disease duration should be assessed for medication adherence. Screening at diagnosis followed by routine assessment of cognitive dysfunction and depression along with perceived self-efficacy may further identify the most vulnerable subgroup who should be targeted with personalized intervention strategies.

Choosing to End African American Health Disparities in Patients With Systemic Lupus Erythematosus.

Systemic lupus erythematosus (SLE) is three times more common and its manifestations are more severe in African American women compared to women of other races. It is not clear whether this is due to genetic differences or factors related to the physical or social environments, differences in health care, or a combination of these factors. Health disparities in patients with SLE between African American patients and persons of other races have been reported since the 1960s and are correlated with measures of lower socioeconomic status. Risk factors for these disparities have been demonstrated, but whether their mitigation improves outcomes for African American patients has not been tested except in self-efficacy. In 2002, the first true US population-based study of patients with SLE with death certificate records was conducted, which demonstrated a wide disparity between the number of African American women and White women dying from SLE. Five years ago, another study showed that SLE mortality rates in the United States had improved but that the African American patient mortality disparity persisted. Between 2014 and 2021, one study demonstrated racism's deleterious effects in patients with SLE. Racism may have been the unmeasured confounder, the proverbial "elephant in the room"-unnamed and unstudied. The etymology of "risk factor" has evolved from environmental risk factors to social determinants to now include structural injustice/structural racism. Racism in the United States has a centuries-long existence and is deeply ingrained in US society, making its detection and resolution difficult. However, racism being man made means Man can choose to change the it. Health disparities in patients with SLE should be addressed by viewing health care as a basic human right. We offer a conceptual framework and goals for both individual and national actions.

Assessment of SLE activity for acute clinical decision-making: use of a colour-coded threat-level approach for the non-rheumatologist.

Systemic lupus erythematosus (SLE) activity indices are widely applied in academic centres and for research protocols but are often not part of usual care in busy under-resourced clinical settings especially where non-rheumatologists are involved in SLE management. We developed a simplified activity index based on the established knowledge and experience of SLE in our hospital and further applied a treatment guideline to assist in acute clinical decision-making. The index is colour-coded for easy reference and categorizes clinical complications in order of the severity of the threat they pose to the patient. An index such as this can be modified to have wider application and relevance in other countries with reduced access to specialist care.

Comparison of the systemic lupus erythematosus activity questionnaire and the systemic lupus erythematosus disease activity index in a black barbadian population.

In Barbados, use of the Systemic Lupus Erythematosus (SLE) Disease Activity Index (SLEDAI) is limited by the unavailability of serologic markers. The SLE Activity Questionnaire (SLAQ) excludes laboratory measurements and is therefore more accessible. Here, we investigate the agreement between the SLAQ, the SLEDAI, and the physician global assessment (PGA). A pilot of 32 participants completed the SLAQ and SLEDAI. The tools were compared (1) in their original format, (2) limited to common indices, and (3) limited to the same patient recall period. We compared the proportions of persons reporting disease activity and the concordance between calculated activity scores for SLAQ versus SLEDAI and for SLAQ versus PGA. Seventy-eight percent versus 59% of participants reported disease activity with the original SLEDAI versus SLAQ, respectively. The relationship was reversed to 22% versus 59% when the matched item tools were compared. Concordance was 0.62 (95% CI 0.42-0.81) between the original scores, 0.70 (0.57-0.83) when restricted by matched items, and 0.72 (0.59-0.84) when further restricted by recall period. Concordance between the SLAQ and PGA was 0.56 (0.32-0.80). Reversal of the disease activity percentage in the matched items comparison highlights the inadequacy of tools that exclude laboratory measurements and suggests that the subjective nature of SLAQ may contribute to over-reporting. Further work is needed to produce a robust disease activity tool apt for resource-constrained environments.

Systemic lupus erythematosus in an African Caribbean population: incidence, clinical manifestations, and survival in the Barbados National Lupus Registry.

OBJECTIVE: To assess the epidemiology, clinical features, and outcomes of systemic lupus erythematosus (SLE) in the predominantly African Caribbean population of Barbados. METHODS: A national registry of all patients diagnosed with SLE was established in 2007. Complete case ascertainment was facilitated by collaboration with the island's sole rheumatology service, medical practitioners, and the lupus advocacy group. Informed consent was required for inclusion. RESULTS: Between January 1, 2000 and December 31, 2009, there were 183 new cases of SLE (98% African Caribbean) affecting 172 women and 11 men for unadjusted annual incidence rates of 12.21 (95% confidence interval [95% CI] 10.46-14.18) and 0.84 (95% CI 0.42-1.51) per 100,000 person-years, respectively. Excluding pediatric cases (ages <18 years), the unadjusted incidence rate among women was 15.14 per 100,000 person-years. The principal presenting manifestations were arthritis (84%), nephritis (47%), pleuritis (41.5%), malar rash (36.4%), and discoid lesions (33.1%). Antinuclear antibody positivity was 95%. The overall 5-year survival rate was 79.9% (95% CI 69.6-87.1), decreasing to 68% in patients with nephritis. A total of 226 persons with SLE were alive at the end of the study for point prevalences of 152.6 (95% CI 132.8-174.5) and 10.1 (95% CI 5.4-17.2) per 100,000 among women and men, respectively. CONCLUSION: Rates of SLE in Barbadian women are among the highest reported to date, with clinical manifestations similar to African American women and high mortality. Further study of this population and similar populations of West African descent might assist our understanding of environmental, genetic, and health care issues underpinning disparities in SLE.

Report of an international symposium on narrowing the Gap in the treatment and study of SLE worldwide: minimum best practices in the management and monitoring of moderate to severe SLE and improving outcomes in constrained environments.

Disparities in health outcomes occur in systemic lupus erythematosus (SLE) especially in economically disadvantaged populations. At the 9th International Congress on SLE, June 24-27, 2010, held in Vancouver, British Columbia, a symposium "Narrowing the Gap in the Treatment and Study of SLE worldwide" was held. Participating physicians from the Caribbean, Central and South America, Asia, Portugal, Africa and impoverished areas of the United States detailed their constraints and desires. These were remarkably consistent. Out of these discussions, a statement on minimum best practice was put forth aimed at the cost-effective management of SLE focusing on the critical factors that make a difference and are feasible even in the most challenging environments. Approaches to designing studies and establishing research and mentoring collaborations was also discussed. The ultimate aim was to provide an avenue for the improvement of care and outcomes for patients with SLE worldwide.

A case of recurrent rash and leg numbness mimicking systemic rheumatic disease: the occurrence of leprosy in a nonendemic area.

Leprosy, a rare chronic granulomatous communicable disease caused by Mycobacterium leprae, is classically known to have cutaneous and neurologic sequelae. As a result of immigration, the disease, endemic in Brazil, India, Nepal, Madagascar, Myanmar, and Indonesia, has been recognized to be present in North America and the Caribbean. We describe a case of a woman presenting with a long history of a recurrent rash and leg numbness, initially diagnosed with systemic lupus, who was later proven to have lepromatous leprosy. It is a reminder that this underappreciated disease should still be considered in the differential diagnosis of skin rash and neuropathy, even in nonendemic regions.

Extensive extranodal adult T-cell lymphoma presenting with a lytic arthropathy of the ankle.

A case is presented of a 44-year-old human T-cell lymphotropic virus-1 seropositive Afro-Caribbean man whose adult T-cell lymphoma presented with an ankle arthropathy. Over a period of weeks he developed subcutaneous tumor masses, osteolytic lesions, sinonasal involvement, and spinal disease culminating in death 4 months after his diagnosis. The case highlights the extranodal manifestations, generally, and rheumatological complications, specifically, of this very aggressive form of lymphoma with review of the relevant literature. Consideration should be given to the possibility of this condition in individuals originating from known endemic areas, notably, the Caribbean, southwestern Japan, South and Central America, parts of southeastern United States, and equatorial Africa.