Dataset Information

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

ABSTRACT:

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.

SUBMITTER: Faith TD

PROVIDER: S-EPMC6231552 | biostudies-literature | 2018 Nov

REPOSITORIES: biostudies-literature

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Publications

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

Faith Trevor D TD Flournoy-Floyd Minnjuan M Ortiz Kasim K Egede Leonard E LE Oates Jim C JC Williams Edith M EM

BMJ open 20181108 11

<h4>Objective</h4>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.<h4>Methods</h4>Qualitative data were gathered using interviews and a focus group, from participants in the Peer Approaches to Lupus Self ...[more]

PMID: 30413505

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Project description:BackgroundCompared with white persons, African Americans have a greater incidence of diabetes, decreased control, and higher rates of microvascular complications. A peer mentorship model could be a scalable approach to improving control in this population and reducing disparities in diabetic outcomes.ObjectiveTo determine whether peer mentors or financial incentives are superior to usual care in helping African American veterans decrease their hemoglobin A(1c) (HbA(1c)) levels.DesignA 6-month randomized, controlled trial. (ClinicalTrials.gov registration number: NCT01125956)SettingPhiladelphia Veterans Affairs Medical Center.PatientsAfrican American veterans aged 50 to 70 years with persistently poor diabetes control.Intervention118 patients were randomly assigned to 1 of 3 groups: usual care, a peer mentoring group, and a financial incentives group. Usual care patients were notified of their starting HbA(1c) level and recommended goals for HbA(1c). Those in the peer mentoring group were assigned a mentor who formerly had poor glycemic control but now had good control (HbA(1c) level ≤7.5%). The mentor was asked to talk with the patient at least once per week. Peer mentors were matched by race, sex, and age. Patients in the financial incentive group could earn $100 by decreasing their HbA(1c) level by 1% and $200 by decreasing it by 2% or to an HbA(1c) level of 6.5%.MeasurementsChange in HbA(1c) level at 6 months.ResultsMentors and mentees talked the most in the first month (mean calls, 4; range, 0 to 30), but calls decreased to a mean of 2 calls (range, 0 to 10) by the sixth month. Levels of HbA(1c) decreased from 9.9% to 9.8% in the control group, from 9.8% to 8.7% in the peer mentor group, and from 9.5% to 9.1% in the financial incentive group. Mean change in HbA(1c) level from baseline to 6 months relative to control was -1.07% (95% CI, -1.84% to -0.31%) in the peer mentor group and -0.45% (CI, -1.23% to 0.32%) in the financial incentive group.LimitationThe study included only veterans and lasted only 6 months.ConclusionPeer mentorship improved glucose control in a cohort of African American veterans with diabetes.Primary funding sourceNational Institute on Aging Roybal Center.

Project description:BackgroundSystemic 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.MethodsThis 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.DiscussionThis 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 registrationClinicalTrials.gov, NCT03734055 . Registered on 27 November 2018.

Project description:Immune dysregulation in systemic lupus erythematosus (SLE) contributes to increased disease activity. African-American (AA) SLE patients have an increased prevalence of complications from disease flares and end-organ damage that leads to increased morbidity and early mortality. We previously reported alterations in inflammatory and regulatory immune mediator levels prior to disease flare in European American (EA) SLE patients. In the current study, we assessed baseline and follow-up plasma levels of 52 soluble mediators, including innate, adaptive, chemokine, and TNF superfamily members, in AA SLE patients who developed SELENA-SLEDAI defined flare 6 or 12 weeks after baseline assessment. These patients were compared to themselves during a comparable, clinically stable period (SNF, n = 18), or to demographically matched SLE patients without impending disease flare (NF, n = 13 per group). We observed significant (q < 0.05) alterations in 34 soluble mediators at baseline, with increased levels of both innate (IL-1α and type I interferons [IFN]) and adaptive cytokines (Th1-, Th2-, and Th17-type), as well as IFN-associated chemokines and soluble TNF superfamily members weeks before clinical disease flare. In contrast, stable SLE patients exhibited increased levels of the regulatory mediators IL-10 (q ≤ 0.0045) and TGF-β (q ≤ 0.0004). Because heterogeneous immune pathways were altered prior to clinical disease flare, we developed a soluble mediator score that encapsulates all mediators tested. This score is the sum of all log transformed, standardized soluble mediator levels assessed at baseline (pre-flare), weighted by their Spearman correlation coefficients for association with the SELENA-SLEDAI score at time of concurrent flare. While baseline SELENA-SLEDAI scores were similar between flare vs. NF (p = 0.7214) and SNF (p = 0.5387), the SMS was significantly higher in pre-flare SLE patients (Flare vs NF or SNF, p < 0.0001). By capturing alterations in the balance between inflammatory and regulatory mediators associated with SLE pathogenesis, the soluble mediator score approximates the immune status of SLE patients and provides a robust, predictive gauge of impending disease flare.

Dataset Information

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

Methods

Results

Conclusion

Publications

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

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