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 Furthermore, statistics describing lupus incidence and prevalence are outdated and often based on small samples.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. METHODS: A prospective survey and retrospective data from the South Carolina Budget and Control Board Office of Research & Statistics were used to capture data pertaining to knowledge of lupus, prevalence, and access to lupus care. RESULTS: Retrospective ORS data indicated there were 11,690 individuals living with lupus in 2014 with the average direct cost of $69,999.40 in medical care. Prospective surveys (N = 325), in over 16 locations in South Carolina, showed 31% knew someone with lupus, 16% had been diagnosed with lupus, and 50% did not know of a medical facility that treated lupus. CONCLUSION: A lupus registry and repository will provide ongoing access for researchers on the impact of lupus on communities in South Carolina. Lupus is highly prevalent, but disproportionately represented in terms of patient information and participation in clinical trials, so it is also expected that this preliminary work will provide an ongoing process in which the medical community can better engage lupus patients.

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. METHODS: We administered a cross-sectional survey to 61 of 74 lead school nurses at their 2019 annual training session in South Carolina. Survey questions assessed lead school nurses' HPV vaccination beliefs, barriers, and HPV vaccination role in schools. We tabulated descriptive data and created heat maps to visualize correlations between responses. RESULTS: Despite 95.1% of nurses envisioning a role in supporting HPV vaccination at their schools, only 41.0% envisioned an active role in promoting HPV vaccine among students. Lead nurses consistently believed in vaccinating both male and female students; in vaccine safety, effectiveness, and health benefits; and in recommending HPV vaccination. The nurses agreed that lack of time and competing priorities were barriers to HPV vaccination. Few other barriers were consistently identified. CONCLUSION: Partnering with school nurses may be a feasible strategy to overcome barriers to increasing HPV vaccination rates in medically underserved areas. However, to increase nurses' confidence and time allotment to assume an active role in HPV vaccine promotion in their schools, coordinated and sustained partnerships between public health agencies, school districts, and school nurses are needed.

"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. This information was then analyzed for themes relating to their experience within the study. RESULTS: We found that empowerment was facilitated by mentors taking their mentorship responsibilities seriously and seeking several avenues for collaboratively developing success with their mentees. Mentors reported that although challenges arose, their desire for success resulted in multiple approaches to be flexible and responsive to the needs of their mentees. Additionally, reciprocity was found to be a vital element of the program. CONCLUSIONS: Key thematic areas supported our ability to demonstrate the usefulness of a peer mentoring program for SLE disease self-management on evoking empowerment through reciprocal relationships among mentors and mentees within our study population. Furthermore the feedback from PALS participants yielded very rich and contextual information that can be used as a thematic guide for developing and refining evidence-based interventions that seek to incorporate empowerment into disease self-management efforts for women suffering from SLE.

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

Introduction: 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. Methods: 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). Outcomes of interest were patient activation and lupus self-efficacy. We used a Least Squares Means model to analyze change in total patient activation and lupus self-efficacy independently in each cohort. We adjusted for demographic variables of age, education, income, employment, and insurance. Results: In both unadjusted and adjusted models for patient activation, there were no statistically significant differences among the three intervention methodologies when comparing changes from baseline to post intervention. Differences in total coping score from baseline to post intervention in the patient navigator group (-101.23, p-value 0.04) and differences in scores comparing the patient navigator with the support group were statistically significant (116.96, p-value 0.038). However, only the difference in total coping from baseline to post intervention for the patient navigator program remained statistically significant (-98.78, p-value 0.04) in the adjusted model. Conclusion: Tailored interventions are a critical pathway toward improving disease self-management among SLE patients. Interventions should consider including patient navigation because this method was shown to be superior in improving self-efficacy (coping scores).

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. The present work aims to determine whether travel burden is associated with increased levels of depression and anxiety among these patients. Data for this study were collected from baseline visits of patients participating in a lupus study at MUSC. A travel/economic burden survey was assessed as well as the 8-item Patient Health Questionnaire (PHQ-8) and the 7-item Generalized Anxiety Disorder (GAD-7) survey as measures of depression and anxiety, respectively. Linear regression models were used to assess the relationship between travel burden and depression and anxiety. Frequency of healthcare visits was significantly associated with increased depression (ß = 1.3, p = 0.02). Significant relationships were identified between anxiety and requiring time off from work for healthcare appointments (ß = 4, p = 0.02), and anxiety and perceived difficulty in traveling to primary care providers (ß = 3.1, p = 0.04). Results from this study provide evidence that travel burden can have an effect on lupus patients' anxiety and depression levels.

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). LBB delivers deidentified clinical data and laboratory specimens. We further present an extension to our solution, the Living µBiome Bank, that allows the user to request and receive phenotyped specimen microbiome data. We discuss the details of the implementation of the LBB system and the necessary regulatory oversight for this solution. The conducted institutional focus group of translational investigators indicates an overall positive sentiment towards potential scientific results generated with the use of LBB. Reference implementation of LBB is available at https://LivingBioBank.musc.edu.

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. The primary outcome variable was access to care measured by preventable hospitalizations caused by an ACS condition. RESULTS: There were 204,150 lupus hospitalizations in the final analysis, with the majority (53.5%) of lupus hospitalizations in states that did not expand Medicaid. In unadjusted analysis, Medicaid expansion states had significantly lower odds of having preventable lupus hospitalizations (odds ratio [OR] 0.958); however, after adjusting for several covariates, Medicaid expansion states had increased odds of having preventable lupus hospitalizations (OR 1.302). Adjusted analysis showed that those individuals with increased age, public insurance (Medicare or Medicaid), no health insurance, rural residence, or low income had significantly higher odds of having a preventable lupus hospitalization. States that expanded Medicaid had $523 significantly more charges than states that did not expand Medicaid. Older age and rural residence were associated with significantly higher charges. CONCLUSION: Our findings suggest that while Medicaid expansion increased health insurance coverage, it did not address other issues related to access to care that could reduce the number of preventable hospitalizations.

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. While evidence-based self-management interventions that incorporate both social support and health education have reduced pain, improved function, and delayed disability among patients with SLE, African Americans and women are still disproportionately impacted by SLE. Peer mentoring interventions are effective in other chronic conditions that disproportionately affect minorities, such as diabetes mellitus, HIV, and kidney disease, but there is currently no empirically tested peer mentoring intervention developed for patients with SLE. Preliminary data from our group suggest that peer mentoring improves self-management, reduces disease activity, and improves health-related quality of life (HRQOL) in African American women with SLE. METHODS: This study will test an innovative, manualized peer mentorship program designed to provide modeling and reinforcement by peers (mentors) to other African American women with SLE (mentees) to encourage them to engage in activities that promote disease self-management. Through a randomized, "mentored" or "support group" controlled design, we will assess the efficacy and mechanism(s) of this intervention in self-management, disease activity, and HRQOL. DISCUSSION: This is the first study to test peer mentorship as an alternative strategy to improve outcomes in African American women with SLE. This could result in a model for other programs that aim to improve disease self-management, disease activity, and HRQOL in African American women suffering from chronic illness. The peer mentoring approach is uniquely fitted to African Americans, and this intervention has the potential to lead to health improvements for African American women with SLE that have not been attainable with other interventions. This would significantly reduce disparities and have considerable public health impact. TRIAL REGISTRATION: ClinicalTrials.gov, NCT03734055 . Registered on 27 November 2018.

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. Through analysis of feedback from a postintervention focus group and mentors' logs, implications on program outcomes and participant satisfaction are discussed. RESULTS: Feedback indicated the importance of recruiting and training capable mentors, consistent contact from study staff to avert adverse events and avert fear or mistrust and careful consideration that must go into the pairing of mentors and mentees. Participant feedback also indicated that sensitive topics must be addressed carefully to prevent distress and dissatisfaction. CONCLUSIONS: Applying the lessons learned from this work as well as the considerations that proved successful may improve the contextualization and ethical conduct of behavioral interventions in special populations resulting in improved tailoring and acceptability toward historically underserved individuals.

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. Data were analysed for themes related to disease experience and how participants cope with their disease. Twenty-seven African-American women with SLE were recruited into the peer mentoring programme, of which 7 served as mentors and 20 served as mentees. A 12-week peer mentoring intervention delivered by phone and based on the Chronic Disease Self-Management and Arthritis Self-Management Programs. RESULTS: Three categories encompassing a total of 10 subcategories emerged from analyses: (A) interpersonal, familialandromantic relationships; (B) individual experiences of living with SLE; and (C) physician-patient relationships. CONCLUSION: We gained insight on several issues related to patient perspectives of African-American women with SLE, and the context surrounding their thoughts and feelings related to lupus, including their providers, families and other social support networks. Additional research efforts could explore and address the thematic domains and respective subthemes identified here. Although limited due to the preliminary nature of the study, this information can be used to create future evidence-based interventions to decrease the impact of SLE on African-American patients.

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. RESULTS: Emotional health outcomes were better for women with systemic lupus erythematosus compared with controls. High emotional health scores may be influenced by cultural factors such as masking emotion, disease-coping mechanisms, religion, and strong familial and social support. Although a significant association was not detected between emotional health and work/regular activities of daily living, relationships were significant after adjusting for corticosteroid use. CONCLUSION: These findings suggest corticosteroid use does influence the strength of the association between emotional health and work/regular activities of daily living.

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. Seven quads consisting of 1 peer mentor and 3 mentees were matched, based on factors such as age, area of residence, and marital and work status. Mentee outcomes of self-management, health-related quality of life, and disease activity were measured using validated tools at baseline, mid-intervention, and post-intervention. Descriptive statistics and effect sizes were calculated to determine clinically important (>0.3) changes from baseline. RESULTS: Mentees showed trends toward lower disease activity (P = 0.004) and improved health-related quality of life, in the form of decreased anxiety (P = 0.018) and decreased depression (P = 0.057). Other improvements in health-related quality of life were observed with effect sizes >0.3, but did not reach statistical significance. In addition, both mentees and mentors gave very high scores for perceived treatment credibility and service delivery. CONCLUSION: The intervention was well received. Training, the peer-mentoring program, and outcome measures were demonstrated to be feasible with modifications. This result provides preliminary support for the efficacy, acceptability, and perceived credibility of a peer-mentoring approach to improve disease self-management and health-related quality of life in African American women with SLE. Peer mentoring may augment current rheumatologic care.

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. Blood samples were collected pre- and post-intervention. Plasma was collected from the samples and cryopreserved for subsequent analyses. The strongest correlations were between the Generalized Anxiety Disorder measure and Th1/Th2 cytokine balance. Weaker correlations existed between depression and the Th1/Th2 cytokine balance. Assessment of fresh versus cryopreserved samples revealed that changes in Th1/Th2 cytokine balance within the intervention were generally equivalent, regardless of sample type. The PALS intervention resulted in significant improvements to anxiety and depression levels which were significantly associated with positive changes in Th1/Th2 cytokine balance indicating a possible underlying mechanism of action. The nature of this relationship warrants further 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. The study's sampling frame consisted of CB county anglers who had purchased a recreational saltwater fishing license for the 2005/2006 year with oversampling in North Charleston. Survey recipients were asked to provide information on fish consumption and shellfish consumption, general angling habits, perception of water and fishing quality, and demographics. Of the 2500 individuals who were sent questionnaires, about one-fourth responded. Respondents were generally white, middle, or upper class and highly educated. The majority fished by boat and most often ate flounder, spotted sea trout, and red drum. Most respondents ate shrimp several times a month and also supplemented their recreational catch with seafood purchased from grocery stores, markets, and restaurants. Almost all respondents had eaten some seafood in the last year, and more than one-fourth ate seafood twice a week or more. Most anglers responded positively about the area's fishing and water qualities, but many referred to areas where they would hesitate to eat their catch. Further research may need to incorporate direct distribution of surveys to underrepresented groups and financial incentives to encompass a more diverse population of anglers.