MEW network self-management program characteristics and lessons learned through the RE-AIM framework.

RATIONALE: The promotion of evidence-based self-management support for people living with chronic conditions such as epilepsy is a public health priority. Epilepsy self-management encompasses three general areas: (1) treatment management, (2) seizure management, and (3) lifestyle management. Interventions focusing on self-management have increased quality of life and adherence to treatment. This study assesses and synthesizes the Managing Epilepsy Well Network (MEWN) program implementation experiences using the RE-AIM framework. This research informs the quality and rigor of MEWN program dissemination and implementation efforts to assess whether these programs are being implemented and their scalability. METHODS: The study data were derived from a MEWN Self-management Program Survey conducted with currently active MEWN researchers through an online survey and review of program publications and archival documents. Survey data were obtained from either the principal investigator or study team for the UPLIFT, HOBSCOTCH, SMART, MINDSET, TIME, and PACES programs. The survey questionnaire included 6 sections consisting of 68 questions and focused on the RE-AIM dimensions and respondent characteristics. The RE-AIM dimensions included: (1) Reach, (2) Effectiveness, (3) Adoption (number of and type of adopting sites), (4) Implementation (retention rate, barriers to implementation), and (5) Maintenance. RESULTS: Across the MEWN programs, participation (44-120 individuals) and delivery methods (community, clinic, or asynchronous; group or individual) ranged with most programs predominantly reaching White or African American participants. Common program outcome measures included clinical outcomes (e.g., depression, quality of life, seizure frequency) and indicators of self-management behaviors (e.g., problem-solving; self-efficacy). Initial efficacy trials suggested programs were effective in changing some of their targeted outcomes (effectiveness). Most programs were implemented in clinical settings and several programs are being replicated or adapted to different geographical (e.g., urban, rural, suburban) or demographic (e.g., race, age) settings (adoption). Program delivery methods involved a mixture of program staff, peer educators, and researchers. Implementation enabling factors included partnerships with local epilepsy organizations and the inclusion of peer educators. Retention rates for all programs averaged 83.6%. Internal barriers included recruitment and lack of sufficient resources for participants. External barriers included clinical staff buy-in, staffing, and insufficient funding for support staff. Despite uncertain funding, all programs offered next steps to sustain their initiatives such as packaging their programs, initiating adoption with regional organizations, and supporting organizational readiness (maintenance). Dissemination efforts included partnering with other organizations, provision of training and technical assistance, and partnering with national organizations on grant opportunities to scale up existing programs. CONCLUSION: These data showcase the impact of the MEWN self-management interventions on health and quality of life. These programs are employing training, readiness assessment, technical assistance, and development of partnerships to increase program scalability. Finally, program adaptations are being conducted to expand the interventions to other populations to address health inequalities. The lessons learned are critical for other interventions attempting to increase the translation of their programs to other settings.

Reduction of the Adult Epilepsy Self-Management Measure Instrument (AESMMI).

Managing one's own symptoms, medications, treatments, lifestyle, and psychological and social aspects of chronic disease is known as self-management. The Institute of Medicine has identified three categories of epilepsy self-management, including medication management, behavior management, and emotional support. Overall, there has been limited research of interventions measuring epilepsy self-management behaviors. The present study aimed to develop an abbreviated version of the full, previously published, Adult Epilepsy Self-Management Measurement Instrument (AESMMI) using confirmatory factor analysis. Data come from a cross-sectional survey of people with epilepsy. The sample included adults with epilepsy (n = 422), who reported that a clinician diagnosed them with epilepsy or a seizure disorder. We ran confirmatory factor analyses in testing the abbreviated scale. The scale was reduced using a theory-driven data-informed approach. The full AESMMI length was reduced by 40% (from 65 to 38 items) with an overall internal consistency of 0.912. The abbreviated AESMMI retained the 11 subdomains, with Cronbach's alphas from 0.535 to 0.878. This reduced item scale can be useful for assessing self-management behaviors for people with epilepsy or measuring outcomes in self-management research.

Association of active coping to unfair treatment with perceived stress and depressive symptoms in African Americans: mh-grid study.

BACKGROUND: Unfair treatment such as discrimination and racism contribute to depression and perceived stress in African Americans. Although studies have examined how responding to such treatment is associated with ameliorating depressive symptoms and levels of perceived stress, most do not focus on African Americans. The purpose of this study is to assess how talking to others in response to unfair treatment is associated with self-reported depressive symptoms and perceived stress levels in African Americans. METHODS: A sample from the 2010-2013 Minority Health Genomics and Translational Research Bio-Repository Database was used and consisted of 376 African American adults aged 30-55 years old residing in the southern region of the United States. Linear regression models were used to assess the association between talking to others following unfair treatment, compared to keeping it to oneself, on self-reported depressive symptoms and perceived stress. The predictor variable was based on the question "If you have been treated unfairly, do you usually talk to people about it or keep it to yourself?". RESULTS: Talking to someone after being treated unfairly was inversely associated with perceived stress ([Formula: see text]: -3.62, SE: 1.14, p ≤ 0.05) and depressive symptoms ([Formula: see text]: -3.62, SE: 1.14, p ≤ 0.05). CONCLUSIONS: African Americans who talked to others in response to unfair treatment had lower depressive symptoms and perceived stress than those who kept it to themselves. More outreach to African Americans regarding the importance of talk in response to exposure to unfair treatment is needed as a potential coping mechanism.

The Managing Epilepsy Well (MEW) network database: Lessons learned in refining and implementing an integrated data tool in service of a national U.S. Research Collaborative.

Epilepsy self-management (ESM) is the summative set of behaviors that people with epilepsy use to cope with seizures and optimize health. This report describes the implementation and evolution of the Managing Epilepsy Well Network Database (MEW DB), an integrated data resource intended to advance knowledge on ESM. The MEW DB utilizes a three-tiered (Tier 1-3) system of data organization, with tiers of data generally increasing in ascending complexity or collection burden. A MEW DB Steering Committee (SC) establishes consensus on planned analyses using a standardized new analysis request template. The data management structure facilitates harmonization and integration of additional data, or to update the database as new data become available. The current MEW DB comprises 1,563 people with epilepsy. Mean age was 39.9 years, 64.9% women (N = 1006), 12.8% African American (N = 170), 22.2% Hispanic (N = 306). On average, individuals have lived with epilepsy since their early 20s and are prescribed between 1 and 2 antiepileptic drugs. The MEW DB spans multiple socio-ecological levels to provide a robust multi-tiered framework for studying ESM. A total of 41 common data elements have been identified through iterative consensus. This integrated database takes advantage of an extensive collective background of archival evidence in ESM and brings together engaged investigators to build a dataset that represents diverse types of individuals with epilepsy, targets health domains important to ESM, and facilitates analyses that would not be possible with sites operating independently. Overall, the MEW DB serves the greater mission of this research collaborative and has potential to advance ESM research.

Depression and suicidality among Hispanics with epilepsy: Findings from the Managing Epilepsy Well (MEW) Network integrated database.

OBJECTIVE: Although psychiatric disorders are more common among people with epilepsy,2 depression and suicidal ideation among Hispanics with epilepsy remain understudied. We examined the prevalence and correlates of depression and suicidal ideation among Hispanic adults with epilepsy who participated in self-management studies in the Managing Epilepsy Well3 Network. METHODS: This cross-sectional analysis of pooled data from ten studies used the Patient Health Questionnaire-94 or Neurological Disease Depression Inventory-Epilepsy5 to examine the prevalence of elevated depressive symptoms (PHQ ≥ 10, NDDI-E ≥ 15) and suicidal ideation (PHQ-9 item 9 ≥ 1, NDDI-E item 4 ≥ 2). Multilevel mixed-effects logistic regression models examined associations between ethnicity, elevated depressive symptoms, and suicidal ideation among PWE. Secondary analyses examined correlates of elevated depressive symptoms and suicidal ideation among Hispanic PWE. RESULTS: Of 559 participants, 49.6% (n = 277) were Hispanic. Elevated depressive symptoms were endorsed by 38.1% (n = 213) of all participants (32.5% of Hispanics); suicidal ideation was endorsed by 18.4% (n = 103) of all participants (16.3% of Hispanics). After adjustment for sociodemographic and health attributes, Hispanic PWE had a 44% lower prevalence of elevated depressive symptoms (OR = 0.56, CI 0.37-0.84, p = 0.0056) compared to non-Hispanics but similar rates of suicidal ideation (OR = 0.84, CI 0.45-1.58, p = 0.59). Acculturation measures were available for 256 (92.4%) of Hispanic PWE: language preference was Spanish for 62.9%, 46.1% were foreign-born. Spanish-speaking Hispanics were less likely than English-speaking Hispanics to report elevated depressive symptoms (OR = 0.43, CI 0.19-0.97, p = 0.041); however, Hispanics who reported fair or poor health status had a four-fold higher depression prevalence compared to those who reported excellent or very good health status [reference group] (OR = 4.44, CI 1.50-13.18, p = 0.0071). Of the Hispanics who provided prior 30-day seizure data, ≥1 monthly seizure was independently associated with higher depression prevalence (OR = 3.11, CI 1.29-7.45, p = 0.01). Being foreign-born was not associated with elevated depressive symptoms or suicidal ideation prevalence. CONCLUSIONS: In a large, geographically diverse sample of PWE, elevated depressive symptoms were significantly lower in Hispanics compared to non-Hispanics. Spanish language preference was associated with a lower prevalence of elevated depressive symptoms among Hispanic PWE. Future studies should include acculturation data to better screen for depression and suicidal ideation risk and optimize interventions for Hispanic PWE.

Epilepsy self-management behaviors among African Americans with epilepsy.

PURPOSE: Although self-management practices are heavily studied in the general population of adults with epilepsy, African American people with epilepsy (PWE) have been understudied. Improving understanding about epilepsy self-management among African Americans is warrantedbecause of the significantly greater mortality rates among this population compared withPWE from other racial/ethnic groups. The purpose of this study was to assess the reliability and validity of the Adult Epilepsy Self-Management Measurement Instrument (AESMMI) for Black/African American adults and describe their self-management behaviors. METHODS: This study was a cross-sectional survey of self-identified Black/African American adults who reported that a health provider diagnosed them as having epilepsy or a seizure disorder. Participants completed a cross-sectional survey between spring 2017 and fall 2018. The survey measured self-management behaviors (65-itemAESMMI), quality of life, depression, seizure severity, epilepsy history, and demographics. We ran descriptive analyses, computed scales, and ran reliability statistics for the AESMMI. Correlations were run between total AESMMI score and depression symptoms and quality of life to assess construct validity. RESULTS: Generally, participants (N = 114) were male (58.6%), from urban/suburban settings (90.5%), at least high school graduates (86.4%), and of lowerincome (90.3%). Their ages ranged from 19 to 64 years with a mean age of 53 years (standard deviation [SD] = 10.9). Participants had general (72.8%) and focal seizures (55.3%) primarily. Many were diagnosed at a young age (M = 10.9), were on antiepileptic medications (91.2%), and had seen a primary care doctor (68.4%) or general neurologist for treatment (54.4%). Sixty percent had visited a neurologist in the past year. African American participants had a low score on quality of life (Quality of Life in Epilepsy [QOLIE], M = 1.86) and low depression symptoms (Patient Health Questionnaire [PHQ-8], M = 3.13). Participants reported conducting self-management behaviors in the following domains more frequently: proactivity (M = 4.11), medication adherence (M = 3.92), healthcare communications (M = 3.91), and social support (M = 3.90). In contrast, they performed self-management behaviors related to treatment (M = 3.34), stress management (M = 3.56), and safety (M = 3.58) less frequently. The overall reliability of the AESMMI was 0.88. Adult Epilepsy Self-Management Measurement Instrument score was correlated with quality of life (r = 0.151). CONCLUSION: Findings are clinically relevant as knowing patients'self-management behaviors enables healthcare clinicians to support and encourage adults to improve the management of their epilepsy. Services or interventions related to coping with stress, safety, and adherence with treatment and medication may be warranted for African Americans with epilepsy.

Self-management for adults with epilepsy: Aggregate Managing Epilepsy Well Network findings on depressive symptoms.

OBJECTIVE: To assess depressive symptom outcomes in a pooled sample of epilepsy self-management randomized controlled trials (RCTs) from the Managing Epilepsy Well (MEW) Network integrated research database (MEW DB). METHODS: Five prospective RCTs involving 453 adults with epilepsy compared self-management intervention (n = 232) versus treatment as usual or wait-list control outcomes (n = 221). Depression was assessed with the nine-item Patient Health Questionnaire. Other variables included age, gender, race, ethnicity, education, income, marital status, seizure frequency, and quality of life. Follow-up assessments were collapsed into a visit 2 and a visit 3; these were conducted postbaseline. RESULTS: Mean age was 43.5 years (SD = 12.6), nearly two-thirds were women, and nearly one-third were African American. Baseline sample characteristics were mostly similar in the self-management intervention group versus controls. At follow-up, the self-management group had a significantly greater reduction in depression compared to controls at visit 2 (P < .0001) and visit 3 (P = .0002). Quality of life also significantly improved in the self-management group at visit 2 (P = .001) and visit 3 (P = .005). SIGNIFICANCE: Aggregate MEW DB analysis of five RCTs found depressive symptom severity and quality of life significantly improved in individuals randomized to self-management intervention versus controls. Evidence-based epilepsy self-management programs should be made more broadly available in neurology practices.

Depression self-management in people with epilepsy: Adapting project UPLIFT for underserved populations.

Data from the 2015 National Health Interview Survey found that the prevalence of active epilepsy has increased to three million adults. Although findings have been mixed, some research indicates that Blacks and Hispanics share a higher burden of epilepsy prevalence compared with non-Hispanic whites. Moreover, depression is a common comorbid condition among people with epilepsy (PWE), affecting up to 55% of the epilepsy population. Widespread use and increased public health impact of evidence-based self-management interventions is critical to reducing disease burden and may require adapting original interventions into more culturally relevant versions for racial and ethnic minority groups. Project UPLIFT provides access to mental health self-management skills training that is distance-delivered, does not interfere with medication management, and has been shown to be effective in reducing depressive symptoms. This paper presents the process of exploring the adaptation of Project UPLIFT for Black and Hispanic PWE and herein suggests that evidence-based interventions can be successfully adapted for new populations or cultural settings through a careful and systematic process. Additional key lessons learned include the importance of community engagement and that language matters. Ultimately, if the adapted Project UPLIFT intervention produces positive outcomes for diverse populations of PWE, it will extend the strategies available to reduce the burden of depression. Implementing evidence-based interventions such as Project UPLIFT is critical to reducing disease burden; however, their delivery may need to be tailored to the needs and culture of the populations of interest.

Depression and quality of life among African Americans with epilepsy: Findings from the Managing Epilepsy Well (MEW) Network integrated database.

Depression and worse quality of life (QOL) are significantly associated with epilepsy. However, limited descriptive data on depression and quality of life among African Americans with epilepsy are available. This study sought to describe the prevalence of depression among African Americans with epilepsy participating in self-management studies and to examine the relationship between depression and QOL. Using data from the Managing Epilepsy Well (MEW) research network, a subgroup of African Americans with epilepsy were selected for the analytic sample. Descriptive statistics indicated the prevalence of depression (Patient Health Questionnaire-9 [PHQ-9]) and reports of epilepsy-specific QOL (Quality of Life in Epilepsy-10 [QOLIE-10]) in the sample. Multiple linear regression examined the relationship between depression and QOL while controlling for sociodemographic characteristics and seizure frequency. The prevalence of depression (PHQ-9 ≥; 10) was 47.7%. Quality of life was the only variable significantly associated with depressive symptoms in multivariable analyses, suggesting that depressive symptoms have a stronger relationship with QOL than seizure frequency. With the high levels of depression and the significant relationship with QOL, regular screening of depression is needed among African Americans with epilepsy. Self-management programs that improve mood may also play an important role in improving the lives of African Americans with epilepsy.

Association of sickle cell trait with chronic kidney disease and albuminuria in African Americans.

IMPORTANCE: The association between sickle cell trait (SCT) and chronic kidney disease (CKD) is uncertain. OBJECTIVE: To describe the relationship between SCT and CKD and albuminuria in self-identified African Americans. DESIGN, SETTING, AND PARTICIPANTS: Using 5 large, prospective, US population-based studies (the Atherosclerosis Risk in Communities Study [ARIC, 1987-2013; n = 3402], Jackson Heart Study [JHS, 2000-2012; n = 2105], Coronary Artery Risk Development in Young Adults [CARDIA, 1985-2006; n = 848], Multi-Ethnic Study of Atherosclerosis [MESA, 2000-2012; n = 1620], and Women's Health Initiative [WHI, 1993-2012; n = 8000]), we evaluated 15,975 self-identified African Americans (1248 participants with SCT [SCT carriers] and 14,727 participants without SCT [noncarriers]). MAIN OUTCOMES AND MEASURES: Primary outcomes were CKD (defined as an estimated glomerular filtration rate [eGFR] of <60 mL/min/1.73 m2 at baseline or follow-up), incident CKD, albuminuria (defined as a spot urine albumin:creatinine ratio of >30 mg/g or albumin excretion rate >30 mg/24 hours), and decline in eGFR (defined as a decrease of >3 mL/min/1.73 m2 per year). Effect sizes were calculated separately for each cohort and were subsequently meta-analyzed using a random-effects model. RESULTS: A total of 2233 individuals (239 of 1247 SCT carriers [19.2%] vs 1994 of 14,722 noncarriers [13.5%]) had CKD, 1298 (140 of 675 SCT carriers [20.7%] vs 1158 of 8481 noncarriers [13.7%]) experienced incident CKD, 1719 (150 of 665 SCT carriers [22.6%] vs 1569 of 8249 noncarriers [19.0%]) experienced decline in eGFR, and 1322 (154 of 485 SCT carriers [31.8%] vs 1168 of 5947 noncarriers [19.6%]) had albuminuria during the study period. Individuals with SCT had an increased risk of CKD (odds ratio [OR], 1.57 [95% CI, 1.34-1.84]; absolute risk difference [ARD], 7.6% [95% CI, 4.7%-10.8%]), incident CKD (OR, 1.79 [95% CI, 1.45-2.20]; ARD, 8.5% [95% CI, 5.1%-12.3%]), and decline in eGFR (OR, 1.32 [95% CI, 1.07-1.61]; ARD, 6.1% [95% CI, 1.4%-13.0%]) compared with noncarriers. Sickle cell trait was also associated with albuminuria (OR, 1.86 [95% CI, 1.49-2.31]; ARD, 12.6% [95% CI, 7.7%-17.7%]). CONCLUSIONS AND RELEVANCE: Among African Americans in these cohorts, the presence of SCT was associated with an increased risk of CKD, decline in eGFR, and albuminuria, compared with noncarriers. These findings suggest that SCT may be associated with the higher risk of kidney disease in African Americans.

COVID-19 Prevention and Mitigation Decision-Making Processes While Navigating Chronic Disease Care: Perspectives of Black Adults with Heart Failure and Diabetes.

BACKGROUND: Heart failure and diabetes are comorbidities that disproportionately contribute to high morbidity and mortality among Blacks. Further compounding the racial and ethnic disparities in COVID-19 health outcomes, Blacks with cardiometabolic diseases are at high risk of experiencing serious complications or mortality from COVID-19. This study aimed to assess how Blacks with heart failure and diabetes navigated chronic care management during the COVID-19 pandemic. METHODS: A mixed methods study including in-depth interviews and surveys with adults diagnosed with heart failure and diabetes (n = 17) was conducted in 2021-2022. Verbatim transcripts were analyzed using a thematic analysis approach. RESULTS: Participants reported that while the pandemic initially caused delays in access to health services, shifts to telemedicine allowed for continued care despite preferences for in-person appointments. Various sources of information were used in different ways to make decisions on how to best reduce health risks due to COVID-19, but individuals and institutions affiliated with science and medicine, or who promoted information from these sources, were considered to be the most trusted sources of information among those who relied on outside guidance when making health-related decisions. Individuals' self-awareness of their own high-risk status and perceived control over their exposure levels to the virus informed what COVID-19 prevention and mitigation strategies people used. CONCLUSION: Information backed by scientific data was an important health communication tool that alongside other factors, such as fear of mortality due to COVID-19, encouraged individuals to get vaccinated and adopt other COVID-19 prevention and mitigation behaviors.

National Changes in Diabetes Care Practices during the COVID-19 Pandemic: Prospective Study of US Adults.

Background: There is a lack of nationally representative prospective data on the impact of the COVID-19 pandemic on diabetes care and management in adults with type 2 diabetes. We examined changes in diabetes care and management practices before and after the onset of the COVID-19 pandemic. Methods: Using the National Health Interview Survey, we analyzed data from 870 adults living with type 2 diabetes who were interviewed in 2019 and re-interviewed between August and December 2020. Exposure to the COVID-19 pandemic was defined by year of survey (2019, pre-pandemic; 2020, pandemic). We estimated percent change in past year blood sugar check by a health professional and current use of blood sugar lowering medication overall and by sociodemographic subgroups. Results: Receiving an annual blood sugar test fell by -3.3 percentage points (pp) (95% CI -5.7, -1.0), from 98.3% in 2019 to 95.0% in late 2020. The reduction in annual blood glucose testing was largely consistent across socio-demographic groups and was particularly pronounced among adults not working and adults aged 65 years and older. In the same time period, current use of diabetes medications increased by +3.8 pp (0.7, 6.9), from 85.9% to 89.7%. The increase in medication use was most pronounced among individuals aged 40-64-year old, employed, and those living in large central metropolitan areas. Conclusions: Nationally, adults with Type 2 diabetes reported a reduction in annual blood glucose testing by a health professional and an increase in diabetes medication usage during the COVID-19 pandemic. If sustained after the end of the COVID-19 public health emergency, these changes have implications for national diabetes management and care.

Disparities in diabetes prevalence and management by race and ethnicity in the USA: defining a path forward.

Type 2 diabetes disparities in the USA persist in both the prevalence of disease and diabetes-related complications. We conducted a literature review related to diabetes prevention, management, and complications across racial and ethnic groups in the USA. The objective of this review is to summarise the current understanding of diabetes disparities by examining differences between and within racial and ethnic groups and among young people (aged <18 years). We also examine the pathophysiology of diabetes as it relates to race and ethnic differences. We use a conceptual framework built on the socioecological model to categorise the causes of diabetes disparities across the lifespan looking at factors in five domains of health behaviours and social norms, public awareness, structural racism, economic development, and access to high-quality care. The range of disparities in diabetes prevalence and management in the USA calls for a community-engaged and multidisciplinary approach that must involve community partners, researchers, practitioners, health system administrators, and policy makers. We offer recommendations for each of these groups to help to promote equity in diabetes prevention and care in the USA.

Community-Centered Assessment to Inform Pandemic Response in Georgia (US).

The Georgia Community Engagement Alliance (CEAL) Against COVID-19 Disparities Project conducts community-engaged research and outreach to address misinformation and mistrust, to promote inclusion of diverse racial and ethnic populations in clinical trials and increase testing and vaccination uptake. Guided by its Community Coalition Board, The GEORGIA CEAL Survey was administered among Black and Latinx Georgia 18 years and older to learn about community knowledge, perceptions, understandings, and behaviors regarding COVID-19 testing and vaccines. Survey dissemination occurred using survey links generated through Qualtrics and disseminated among board members and other statewide networks. Characteristics of focus counties were (a) highest proportion of 18 years and older Black and Latinx residents; (b) lowest COVID-19 testing rates; and (c) highest SVI values. The final sample included 2082 surveyed respondents. The majority of participants were men (57.1%) and Latinx (62.8%). Approximately half of the sample was aged 18-30 (49.2%); the mean age of the sample was 33.2 years (SD = 9.0), ranging from 18 to 82 years of age. Trusted sources of COVID-19 information that significantly predicted the likelihood of vaccination included their doctor/health care provider (p-value: 0.0054), a clinic (p-value: 0.006), and university hospitals (p-value: 0.0024). Latinx/non-Latinx, Blacks vs. Latinx, Whites were significantly less likely to get tested and/or vaccinated. Non-Latinx, Blacks had higher mean knowledge scores than Latinx, Whites (12.1 vs. 10.9, p < 0.001) and Latinx, Blacks (12.1 vs. 9.6, respectively, p < 0.001). The mean knowledge score was significantly lower in men compared to women (10.3 vs. 11.0, p = 0.001), in those who had been previously tested for COVID-19 compared to those who had never been tested (10.5 vs. 11.5, respectively, p = 0.005), and in those who did not receive any dose of vaccination compared to those who were fully vaccinated (10.0 vs. 11.0, respectively, p < 0.001). These data provide a benchmark for future comparisons of the trajectory of public attitudes and practices related to the COVID-19 pandemic. They also point to the importance of tailoring communication strategies to specific cultural, racial, and ethnic groups to ensure that community-specific barriers to and determinants of health-seeking behaviors are appropriately addressed.

The Managing Epilepsy Well Network:: Advancing Epilepsy Self-Management.

Epilepsy, a complex spectrum of disorders, affects about 2.9 million people in the U.S. Similar to other chronic disorders, people with epilepsy face challenges related to management of the disorder, its treatment, co-occurring depression, disability, social disadvantages, and stigma. Two national conferences on public health and epilepsy (1997, 2003) and a 2012 IOM report on the public health dimensions of epilepsy highlighted important knowledge gaps and emphasized the need for evidence-based, scalable epilepsy self-management programs. The Centers for Disease Control and Prevention translated recommendations on self-management research and dissemination into an applied research program through the Prevention Research Centers Managing Epilepsy Well (MEW) Network. MEW Network objectives are to advance epilepsy self-management research by developing effective interventions that can be broadly disseminated for use in people's homes, healthcare providers' offices, or in community settings. The aim of this report is to provide an update on the MEW Network research pipeline, which spans efficacy, effectiveness, and dissemination. Many of the interventions use e-health strategies to eliminate barriers to care (e.g., lack of transportation, functional limitations, and stigma). Strengths of this mature research network are the culture of collaboration, community-based partnerships, e-health methods, and its portfolio of prevention activities, which range from efficacy studies engaging hard-to-reach groups, to initiatives focused on provider training and knowledge translation. The MEW Network works with organizations across the country to expand its capacity, help leverage funding and other resources, and enhance the development, dissemination, and sustainability of MEW Network programs and tools. Guided by national initiatives targeting chronic disease or epilepsy burden since 2007, the MEW Network has been responsible for more than 43 scientific journal articles, two study reports, seven book chapters, and 62 presentations and posters. To date, two programs have been adopted and disseminated by the national Epilepsy Foundation, state Epilepsy Foundation affiliates, and other stakeholders. Recent expansion of the MEW Network membership will help to extend future reach and public health impact.

Perceived neighborhood problems are associated with shorter telomere length in African American women.

OBJECTIVES: African Americans (AA) experience higher levels of stress related to living in racially segregated and poor neighborhoods. However, little is known about the associations between perceived neighborhood environments and cellular aging among adult AA. This study examined whether perceived neighborhood environments were associated with telomere length (TL) in AA after adjustment for individual-level risk factors. METHODS: The analysis included 158 women and 75 men AA aged 30-55 years from the Morehouse School of Medicine Study. Relative TL (T/S ratio) was measured from peripheral blood leukocytes using quantitative real-time polymerase chain reaction. Multivariable linear regression models were used to examine the associations of perceived neighborhood social cohesion, problems, and overall unfavorable perceptions with log-TL. RESULTS: Women had significantly longer TL than men (0.59 vs. 0.54, p=0.012). After controlling for sociodemographic, and biomedical and psychosocial factors, a 1-SD increase in perceived neighborhood problems was associated with 7.3% shorter TL in women (Mean Difference [MD]=-0.073 (Standard Error=0.03), p=0.012). Overall unfavorable perception of neighborhood was also associated with 5.9% shorter TL among women (MD=-0.059(0.03), p=0.023). Better perceived social cohesion were associated with 2.4% longer TL, but did not reach statistical significance (MD=0.024(0.02), p=0.218). No association was observed between perceived neighborhood environments and TL in men. CONCLUSIONS: Our findings suggest that perceived neighborhood environments may be predictive of cellular aging in AA women even after accounting for individual-level risk factors. Additional research with a larger sample is needed to determine whether perceived neighborhood environments are causally related to TL.

Associations of Apelin, Visfatin, and Urinary 8-Isoprostane With Severe Hypertension in African Americans: The MH-GRID Study.

BACKGROUND: Apelin is an adipokine directly associated with adiposity, insulin resistance, and decreased blood pressure. Urinary 8-isoprostane is a marker of chronic oxidative endothelial stress. Visfatin, an adipokine that acts by binding and activating the insulin receptor, has been associated with hypertension. As severe hypertension (SH) is highly prevalent among African Americans (AA), we aimed to assess the association of these biomarkers with SH status. METHODS: A sample of 250 AA participants (134 normotensive controls and 116 with SH (including 98 treatment controlled, SCH: severe controlled hypertension, and 18 treatment resistant, SRH: severe resistant hypertension)) from the Minority Health Genomics and Translational Research Bio-Repository Database (MH-GRID) in metro Atlanta had blood analyzed for apelin and visfatin and urine for 8-isoprostane. T-tests, sex-specific age-adjusted correlation coefficients, and multivariable logistic regression models were used to assess the association of biomarkers with hypertensive status. RESULTS: Levels of apelin and 8-isoprostane were not statistically different between controls and SCH or SRH. Statistically significant differences were present in levels of visfatin between controls (1.03±0.84 pg/ml), SCH (1.34±1.14 pg/ml), and SRH (1.59±0.85 pg/ml). After multivariable adjustment, categorization in the middle 2 quartiles of urinary 8-isoprostane were associated with SH. In similar models, categorization into the highest quartile of visfatin was associated with SH (odds ratio = 2.80; 95% confidence interval: 1.02-7.02). A continuous association of visfatin with SH was present. CONCLUSION: In our community sample of AA, there were increased odds of SH with increased levels of urinary 8-isoprostane and visfatin, but not with apelin.