The Effect of Travel Burden on Depression and Anxiety in African American Women Living with Systemic Lupus.

The United States has a deficit of rheumatology specialists. This leads to an increased burden in accessing care for patients requiring specialized care. Given that most rheumatologists are located in urban centers at large hospitals, many lupus patients must travel long distances for routine appointments.

Support Methodologies for African American Women With Lupus - Comparing Three Methods' Effects on Patient Activation and Coping.

Systemic lupus erythematosus (SLE) is a chronic inflammatory disease in which the immune system attacks healthy tissues. While pharmaceutical therapies are an important part of disease management, behavioral interventions have been implemented to increase patients' disease self-management skills, provide social support, and encourage patients to take a more active role in their care. Three interventions are considered in this study; peer-to-peer methodology, patient support group, and a patient navigator program that were implemented among largely African American women with SLE at the Medical University of South Carolina (MUSC).

The Care-coordination Approach to Learning Lupus Self-Management: a patient navigator intervention for systemic lupus inpatients.

Objective: The Care-coordination Approach to Learning Lupus Self-Management (CALLS) study was designed to improve SLE disease self-management. This study aims to assess the benefits of the intervention compared with existing lupus care.

Methods: Participants were randomly assigned to participate in 12-weekly phone sessions with the patient navigator that included structured educational content, care coordination and patient-centred support services, or a usual care control condition.

Feasibility and preliminary data for a State-wide South Carolina Lupus Registry.

Background: Systemic lupus erythematosus (SLE) or lupus is an autoimmune disorder whose cause and reason for disproportionate impact on minorities remains enigmatic. Furthermore, statistics describing lupus incidence and prevalence are outdated and often based on small samples. To begin to address this disparity this report describes preliminary data to be utilized in the development of a state-wide lupus registry in South Carolina.

Each patient is a research biorepository: informatics-enabled research on surplus clinical specimens via the living BioBank.

The ability to analyze human specimens is the pillar of modern-day translational research. To enhance the research availability of relevant clinical specimens, we developed the Living BioBank (LBB) solution, which allows for just-in-time capture and delivery of phenotyped surplus laboratory medicine specimens. The LBB is a system-of-systems integrating research feasibility databases in i2b2, a real-time clinical data warehouse, and an informatics system for institutional research services management (SPARC).

A Cross-Sectional Survey to Evaluate Potential for Partnering With School Nurses to Promote Human Papillomavirus Vaccination.

Introduction: The human papillomavirus (HPV) increases the risk for cancers of the cervix, oropharynx, vulva, vagina, penis, and anus. HPV vaccination rates are low in many states having large medically underserved areas. In such areas, school nurses are a potential partner for improving population health, but their perceptions about HPV, HPV vaccination, and their role in promoting HPV vaccination have not been well documented.

Impact of the Affordable Care Act Medicaid Expansion on Access to Care and Hospitalization Charges for Lupus Patients.

Objective: To examine the impact of the Affordable Care Act on preventable hospitalizations and associated charges for patients living with systemic lupus erythematosus, before and after Medicaid expansion.

Methods: A retrospective, quasi-experimental study, using an interrupted time series research design, was conducted to analyze data for 8 states from the Healthcare Cost and Utilization Project state inpatient databases. Lupus hospitalizations with a principal diagnosis of predetermined ambulatory-care sensitive (ACS) conditions were the unit of primary analysis.

Peer approaches to self-management (PALS): comparing a peer mentoring approach for disease self-management in African American women with lupus with a social support control: study protocol for a randomized controlled trial.

Background: Systemic lupus erythematosus (SLE or lupus) is a chronic autoimmune disease that is associated with increased morbidity, mortality, healthcare costs and decreased quality of life. African Americans in the USA have three to four times greater prevalence of SLE, risk of developing SLE at an earlier age, and SLE-related disease activity, damage, and mortality compared with Caucasians, with the highest rates experienced by African American women. There is strong evidence that patient-level factors are associated with outcomes, which justifies targeting them with intervention.

My life with lupus: contextual responses of African-American women with systemic lupus participating in a peer mentoring intervention to improve disease self-management.

Objective: The current article seeks to examine the ways in which African-American women with systemic lupus erythematosus (SLE) describe their disease experience and how they cope with their disease. This qualitative study provides deeper insight into whether experiences of African-American women with SLE differ from previous qualitative study findings.

Methods: Qualitative data were gathered using interviews and a focus group, from participants in the Peer Approaches to Lupus Self-management (PALS) programme.

Cultural and quality-of-life considerations when administering corticosteroids as a therapeutic strategy for African American women living with systemic lupus erythematosus.

Objective: This study investigated the association among corticosteroids, emotional health, physical health, and work/regular activities of daily living in an ethnically diverse sample of women with systemic lupus erythematosus.

Methods: A secondary analysis of data from the Medical University of South Carolina Lupus Database was conducted between confirmed cases of lupus (n = 224) and controls (n = 60). The sample comprised 57 Caucasian Americans, 141 Gullah African Americans (a subpopulation of African Americans from the Sea Islands of South Carolina and Georgia), and 86 non-Gullah African Americans.

"We Would Still Find Things to Talk About": Assessment of Mentor Perspectives in a Systemic Lupus Erythematosus Intervention to Improve Disease Self-Management, Empowering SLE Patients.

Background: Systemic Lupus Erythematosus (SLE) is a chronic autoimmune disorder with significant disparate impact on African American women. The current study sought to highlight how the Peer Approaches to Lupus Self-management (PALS) intervention worked bi-directionally wherein both women with SLE leading the disease self-management program (mentors), and those participants who served as mentees, were empowered toward greater disease self-efficacy.

Methods: Data was captured for this study in two formats from the seven mentors participating in the pilot study: 1) mentor logs and 2) mentor interviews with the principle investigator.

Research Ethics in Behavioral Interventions Among Special Populations: Lessons From the Peer Approaches to Lupus Self-Management Study.

Background: Research involving a homogenous cohort of participants belonging to a special population must make considerations to recruit and protect the subjects. This study analyses the ethical considerations made in the peer approaches to lupus self-management project which pilot tested a peer mentoring intervention for African American women with systemic lupus erythematosus.

Methods: Considerations made at the outset of the project are described and their justifications and reasoning are given.

Peer-to-Peer Mentoring for African American Women With Lupus: A Feasibility Pilot.

Objective: To examine the feasibility and potential benefits of peer mentoring to improve the disease self-management and quality of life of individuals with systemic lupus erythematosus (SLE).

Methods: Peer mentors were trained and paired with up to 3 mentees to receive self-management education and support by telephone over 12 weeks. This study took place at an academic teaching hospital in Charleston, South Carolina.

Cytokine balance and behavioral intervention; findings from the Peer Approaches to Lupus Self-Management (PALS) project.

The Peer Approaches to Lupus Self-Management program sought to address the disparate impact of systemic lupus erythematosus (SLE) on African American women through a peer mentoring intervention with aims of reducing stress, anxiety, and depression. Given the association between psychological health and immune function this study examines the relationship between patient reported outcomes (PROs) in these domains and immunologic indicators of disease activity. Twenty-three African American women with SLE served as mentees in the intervention from whom PRO measures were collected at the outset, midpoint, and end of the 12week pilot study.

Quantifying the Seafood Consumption Patterns of Recreational Anglers in Charleston and Berkeley Counties, South Carolina.

This study was designed to provide self-reported data on the frequency of fish consumption and shellfish consumption in Charleston and Berkeley (CB) counties, South Carolina. While commercial fishing and recreational fishing have played an important role in the culture and history of the area, information on the specific patterns of consumption by recreational anglers has been previously unavailable. The pilot data presented here will help determine the feasibility of a large-scale survey of seafood consumption in coastal South Carolina.