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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.

ABSTRACT: 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.

SUBMITTER: Williams EM

PROVIDER: S-EPMC6708151 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature

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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.

Williams Edith M EM Egede Leonard L Oates Jim C JC Dismuke Clara L CL Ramakrishnan Viswanathan V Faith Trevor D TD Johnson Hetlena H Rose Jillian J

Trials 20190823 1

<h4>Background</h4>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 pati ...[more]

PMID: 31443732

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Project description:BACKGROUND:Compared 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. OBJECTIVE:To 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. DESIGN:A 6-month randomized, controlled trial. (ClinicalTrials.gov registration number: NCT01125956) SETTING:Philadelphia Veterans Affairs Medical Center. PATIENTS:African American veterans aged 50 to 70 years with persistently poor diabetes control. INTERVENTION:118 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%. MEASUREMENTS:Change in HbA(1c) level at 6 months. RESULTS:Mentors 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. LIMITATION:The study included only veterans and lasted only 6 months. CONCLUSION:Peer mentorship improved glucose control in a cohort of African American veterans with diabetes. PRIMARY FUNDING SOURCE:National Institute on Aging Roybal Center.

Project description:BackgroundHealthcare 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.MethodsParticipants 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.ResultsStudy 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.ConclusionsOur 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 registrationNCT02988661 . Registered 12/07/2016.

Project description:Systemic Lupus Erythematosus (lupus) is a chronic autoimmune disease that can impact any organ system and result in life-threatening complications. African-Americans are at increased risk for morbidity and mortality from lupus. Self-management programs have demonstrated significant improvements in health distress, self-reported global health, and activity limitation among people with lupus. Despite benefits, arthritis self-management education has reached only a limited number of people. Self-selection of program could improve such trends. The aim of the current study is to test a novel intervention to improve quality of life, decrease indicators of depression, and reduce perceived and biological indicators of stress in African-American lupus patients in South Carolina.In a three armed randomized, wait list controlled trial, we will evaluate the effectiveness of a patient-centered 'a-la-carte' approach that offers subjects a variety of modes of interaction from which they can choose as many or few as they wish, compared to a 'set menu' approach and usual care. This unique 'a-la-carte' self-management program will be offered to 50 African-American lupus patients participating in a longitudinal observational web-based SLE Database at the Medical University of South Carolina. Each individualized intervention plan will include 1-4 options, including a mail-delivered arthritis kit, addition and access to an online message board, participation in a support group, and enrollment in a local self-management program. A 'set menu' control group of 50 lupus patients will be offered a standardized chronic disease self-management program only, and a control group of 50 lupus patients will receive usual care. Outcomes will include changes in (a) health behaviors, (b) health status, (c) health care utilization, and (d) biological markers (urinary catecholamines).Such a culturally sensitive educational intervention which includes self-selection of program components has the potential to improve disparate trends in quality of life, disease activity, depression, and stress among African-American lupus patients, as better outcomes have been documented when participants are able to choose/dictate the content and/or pace of the respective treatment/intervention program. Since there is currently no "gold standard" self-management program specifically for lupus, this project may have a considerable impact on future research and policy decisions.NCT01837875 ; April 18, 2013.

Project description:BackgroundHealth promotion efforts among African American men have been met with significant challenges and have produced limited results. Interventions that do not align with the values, perspectives, and preferences of African American men often produce less effective results. Research among African American men has provided compelling evidence that these men prefer informal networks of health support. Recent successful health promotion efforts among these men have benefited from peer-to-peer models of implementation. To date, no known scoping or systematic review of peer-to-peer health promotion interventions among African American men has been conducted. The goal of this scoping review is to understand the extent of, design, implementation, and use of peer-to-peer interventions to promote health, improve quality of life, and prevent disease among African American men.MethodsA review of the literature will be performed in PubMED, EMBASE, PsycInfo, CINAHL, and Web of Science. The development of this protocol was guided by the work of Arksey and O'Malley and the PICOS statement. Reporting will be guided by the PRISMA-ScR checklist. Eligible studies include those testing the effects of a peer-to-peer health promotion intervention targeting African American men. A comparison group will not be required. For the purposes of the current review, "peers" will be limited to other African American men. An initial screening of the titles and abstracts of potentially eligible studies will be completed by two independent reviewers. The full text of records that appear to meet the eligibility criteria will be accessed and further screened. Data will then be extracted and collected using a custom Microsoft Excel spreadsheet. Extracted data will include authors' name and publication year, target health issue(s), design of the intervention, components of the intervention, peer-led components of the intervention, peer role, length and type of training for peer leaders, intervention duration, frequency of the intervention, study design and number of participants, and main outcomes. Finally, results will be presented in table format and summarized in text format.DiscussionResults will have implications for the design, implementation, and evaluation of health promotion interventions among African American men.Systematic review registrationPROSPERO CRD42020198664.

Project description:To examine the feasibility and potential benefits of early peer support to improve the health and quality of life of individuals with early inflammatory arthritis (EIA).Feasibility study using the 2008 Medical Research Council framework as a theoretical basis. A literature review, environmental scan, and interviews with patients, families and healthcare providers guided the development of peer mentor training sessions and a peer-to-peer mentoring programme. Peer mentors were trained and paired with a mentee to receive (face-to-face or telephone) support over 12 weeks.Two academic teaching hospitals in Toronto, Ontario, Canada.Nine pairs consisting of one peer mentor and one mentee were matched based on factors such as age and work status.Mentee outcomes of disease modifying antirheumatic drugs (DMARDs)/biological treatment use, self-efficacy, self-management, health-related quality of life, anxiety, coping efficacy, social support and disease activity were measured using validated tools. Descriptive statistics and effect sizes were calculated to determine clinically important (>0.3) changes. Peer mentor self-efficacy was assessed using a self-efficacy scale. Interviews conducted with participants examined acceptability and feasibility of procedures and outcome measures, as well as perspectives on the value of peer support for individuals with EIA. Themes were identified through constant comparison.Mentees experienced improvements in the overall arthritis impact on life, coping efficacy and social support (effect size >0.3). Mentees also perceived emotional, informational, appraisal and instrumental support. Mentors also reported benefits and learnt from mentees' fortitude and self-management skills. The training was well received by mentors. Their self-efficacy increased significantly after training completion. Participants' experience of peer support was informed by the unique relationship with their peer. All participants were unequivocal about the need for peer support for individuals with EIA.The intervention was well received. Training, peer support programme and outcome measures were demonstrated to be feasible with modifications. Early peer support may augment current rheumatological care.NCT01054963, NCT01054131.

Dataset Information

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.

Publications

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.

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