Project UPLIFT: Adoption and implementation experiences of an epilepsy self-management program.

RATIONALE: Project UPLIFT is an evidence-based epilepsy self-management program shown to prevent and treat depression through an 8-session, group telehealth intervention. Since 2012, the program has been disseminated by training community-based providers to deliver UPLIFT to people with epilepsy (PWE). Limited research has described the adoption, implementation, and practice-based maintenance of self-management programs like UPLIFT. We sought to gain a better understanding of this process from trained program adopters. METHODS: A cross-sectional evaluation of adoption and implementation experiences was conducted. An online survey with closed- and open-ended questions was distributed to 120 UPLIFT program adopters to collect information about reasons for being trained and experiences implementing the program. Survey items were developed based on the RE-AIM model to assess program reach, effectiveness, adoption, implementation, and maintenance. For closed-ended responses, frequencies and cross-tabs were calculated. Open-ended responses were reviewed and grouped by theme. RESULTS: 41 respondents completed the survey (34% response rate). Respondents were from a variety of organizations including clinical (39%, n = 16), educational/research (17%, n = 7), and Epilepsy Foundation affiliates/chapters (12%, n = 5), among others. The most frequently endorsed reason for training in UPLIFT was an interest in supporting PWE (73%, n = 30). Most respondents rated delivering UPLIFT as very important (49%, n = 20) or important (32%, n = 13) to the organization. Sixty-one percent (n = 25) of respondents reported implementing (implementors) UPLIFT. Of those who had not yet implemented UPLIFT, 50% (n = 8) planned on implementing it at some point. Among program implementors, the most frequently reported implementation facilitators included participant interest (68%, n = 17), training (68%, n = 17), and organizational support (64%, n = 16). Program implementors indicated having program champions (80%, n = 20). The most frequently reported implementation challenge reported was recruitment (72%, n = 18). In open-ended responses, funding was a key theme that would facilitate continued implementation, but 48% (n = 12) responded that did not have access to resources and/or funding to help continue offering UPLIFT. Developing partnerships was recommended to improve the reach and maintenance of the program. Despite challenges, implementors agreed (44%, n = 11) or strongly agreed (36%, n = 9) that UPLIFT was effective in addressing mental health problems among program participants, and 76% (n = 19) plan on continuing to offer UPLIFT. CONCLUSION: Implementation surveys increase understanding of program adoption and impact for dissemination trainees. Implementation benefits from program champions, strong partnerships, and sustained funding. Continued refinement of implementation support, such as developing a sustained referral system, maintaining relationships with trainees, supporting evaluation activities, and exploring opportunities for program updates to further enhance adoption, implementation, and maintenance.

Associations of maternal emotion regulation with child white matter connectivity in Black American mother-child dyads.

Parental emotion regulation plays a major role in parent-child interactions, and in turn, neural plasticity in children, particularly during sensitive developmental periods. However, little is known about how parental emotion dysregulation is associated with variation in children's brain structure, which was the goal of this study. Forty-five Black American mother-child dyads were recruited from an intergenerational trauma study; emotion regulation in mothers and their children (age 8-13 years) was assessed. Diffusion-weighted images were collected in children; deterministic tractography was used to reconstruct pathways of relevance to emotion regulation. Metrics of white matter connectivity [fractional anisotropy (FA), mean diffusivity (MD)] were extracted for pathways. Socio-economic variables were also included in statistical models. Maternal emotion dysregulation was the strongest predictor of child fornix MD (r = .35, p = .001), indicating that more severe emotion dysregulation in mothers corresponded with lower fornix connectivity in children. Maternal impulsivity was a strong predictor of child fornix MD (r = .51, p < .001). Maternal emotion dysregulation may adversely influence connectivity of the child.s fornix, a hippocampal-striatal pathway implicated in reward processes; these associations remained even after accounting for other socio-environmental factors. Dysregulated maternal emotions may uniquely impact children's adaptation to trauma/stress by affecting networks that support appetitive processing.

The impact of a depression self-management intervention on seizure activity.

PURPOSE: Seizures have a variety of significant physical, cognitive, and social effects upon the individual. Depression has been linked to an increase in seizure activity, and Project Using Practice and Learning to Increase Favorable Thoughts (UPLIFT) was shown to reduce depressive symptoms. Project UPLIFT, based upon mindfulness-based cognitive therapy (MBCT), provides distance delivery of depression management skills to groups of people with epilepsy. Because Project UPLIFT reduces depression and depression is linked to seizure activity, the current analysis was designed to determine the impact of Project UPLIFT upon seizure frequency and severity. METHOD: Participants (n = 107) were adults ages 21-70 with epilepsy and mild-to-moderate depressive symptoms from the states of Georgia, Michigan, Texas, and Washington. The eight-session Project UPLIFT intervention was group-delivered weekly via the web or telephone. Participants were randomly assigned to condition (i.e., Project UPLIFT or a treatment-as-usual [TAU] waitlist) and assessed at baseline, and after intervening in the Project UPLIFT group (~10 weeks). Assessments included valid self-report measures of seizure frequency and severity and depression. RESULTS: Mediation analysis found that there was a significant negative direct relationship between condition and number of seizures at posttest; the mean number of seizures decreased by 3.2 in the Project UPLIFT group, but increased by 2.3 in the TAU group. The indirect path from condition to number of seizures through change in depression was not significant. Conversely, there was no significant negative direct relationship between condition and seizure severity at posttest, although the seizure severity decreased by 2.2 points in the UPLIFT group and increased by 2.7 points in the TAU group. The indirect path from condition to seizure severity through depression was significant, however, demonstrating that change in depression mediated the effect of Project UPLIFT on seizure severity. CONCLUSIONS: This study found that participating in Project UPLIFT directly reduced the number of seizures experienced by participants with epilepsy. This was not mediated by the change in depression. Participation in Project UPLIFT also reduced their perceived seizure severity indirectly, through reducing their depressive symptoms. This suggests Project UPLIFT may have the potential to impact the health, healthcare costs, and well-being of people with epilepsy.

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.

Responding to a suicidal friend or family member: A qualitative study of college students.

The purpose of this qualitative study was to understand how college students have responded, at any point in their lifetime, to a suicidal friend or family member. College students completed an online survey in which they described, in their own words, what they have done when a friend or family member disclosed being suicidal. These responses included providing social support, information, telling someone, and crisis support. Future studies are needed to determine how common these responses are, identify factors that predict certain responses, and examine the impact responding to a suicidal person can have on college student wellbeing.

A dyadic model of living with epilepsy based on the perspectives of adults with epilepsy and their support persons.

Epilepsy is a chronic condition that significantly affects the lives of individuals with epilepsy and their support persons, though few studies have examined the experiences of both. To examine these experiences and explore the interpersonal relationships between dyad members, we conducted in-depth interviews with 22 persons with epilepsy and 16 support persons. Data analysis was guided by a grounded theory perspective. We developed a model that shows how epilepsy impacts the lives of both persons with epilepsy and their support persons and how the experiences of persons with epilepsy and supporters influence one another. The core model elements were seizure and treatment factors, relationship characteristics, self-management, seizure control, support provided, illness intrusiveness, and quality of life. Persons with epilepsy moved through the model in five trajectories depending on seizure control, relationship type, and gender. Support providers followed four trajectories based on seizure control, perception of burden, and support for themselves. Persons with epilepsy and their primary support providers have varied experiences in how epilepsy affects their lives. This model could serve as a basis for future research and intervention efforts focused on ways to reduce illness intrusiveness and improve quality of life for persons with epilepsy and their supporters.

Factor analyses of an Adult Epilepsy Self-Management Measurement Instrument (AESMMI).

The purpose of this study was to test the psychometric properties of an enhanced Adult Epilepsy Self-Management Measurement Instrument (AESMMI). An instrument of 113 items, covering 10 a priori self-management domains, was generated through a multiphase process, based on a review of the literature, validated epilepsy and other chronic condition self-management scales and expert input. Reliability and exploratory factor analyses were conducted on data collected from 422 adults with epilepsy. The instrument was reduced to 65 items, converging on 11 factors: Health-care Communication, Coping, Treatment Management, Seizure Tracking, Social Support, Seizure Response, Wellness, Medication Adherence, Safety, Stress Management, and Proactivity. Exploratory factors supported the construct validity for 6 a priori domains, albeit with significant changes in the retained items or in their scope and 3 new factors. One a priori domain was split in 2 subscales pertaining to treatment. The configuration of the 11 factors provides additional insight into epilepsy self-management behaviors. Internal consistency reliability of the 65-item instrument was high (α=.935). Correlations with independent measures of health status, quality of life, depression, seizure severity, and life impact of epilepsy further validated the instrument. This instrument shows potential for use in research and clinical settings and for assessing intervention outcomes and self-management behaviors in adults with epilepsy.

Development of the Adult Epilepsy Self-Management Measurement Instrument (AESMMI).

Epilepsy self-management is the total sum of steps that people perform to maximize seizure control, to minimize the impact of having a seizure disorder, and to maximize quality of life. As part of a phased approach to instrument development, we conducted descriptive analyses of data from epilepsy self-management items covering 10 domains of self-management gathered from 422 adults with epilepsy from multiple study sites. Participants most frequently reported performing sets of behaviors related to managing treatment and stigma, information seeking, managing symptoms, and communicating with providers. Behaviors reported with lower frequency were related to seeking social support and engaging in wellness behaviors. Significant differences for the domains were found for income, gender, and education levels but not for other different demographic variables. A subsequent analytic phase, reported in a companion article, will use factor analysis to identify and validate the subscale structure of the domains.

Unemployment and depression among emerging adults in 12 states, Behavioral Risk Factor Surveillance System, 2010.

INTRODUCTION: The high rate of unemployment among emerging adults (aged 18 to 25 years) is a public health concern. The risk of depression is higher among the unemployed than among the employed, but little is known about the relationship between unemployment and mental health among emerging adults. This secondary data analysis assessed the relationship between unemployment and depression among emerging adults. METHODS: Data from the 2010 Behavioral Risk Factor Surveillance System (BRFSS) were analyzed. Responses to the Patient Health Questionnaire-8 provided data about the prevalence of depression. Bivariate relationships were assessed using χ(2) tests, and multivariable adjusted odds ratios were calculated with logistic regressions. Sociodemographic variables were sex, race/ethnicity, marital status, and education. In addition, logistic regression models adjusted for health insurance status, disability, smoking, and body mass index. The analyses were completed using SAS 9.3 survey procedures to account for the complex sampling design. RESULTS: Almost 12% of emerging adults were depressed (PHQ-8 ≥10) and about 23% were unemployed. Significantly more unemployed than employed emerging adults were classified with depression. In the final model, the odds of depression were about 3 times higher for unemployed than employed emerging adults. CONCLUSION: The relationship between unemployment and depression is significant among emerging adults. With high rates of unemployment for this age group, this population may benefit from employment- and mental-health-focused interventions.

A mixed methods analysis of support for self-management behaviors: perspectives of people with epilepsy and their support providers.

Social support is associated with improved self-management for people with chronic conditions, such as epilepsy; however, little is known about the perceived ease or difficulty of receiving and providing support for epilepsy self-management. We examined patterns of epilepsy self-management support from the perspectives of both people with epilepsy and their support persons. Fifty-three people with epilepsy and 48 support persons completed a survey on epilepsy self-management support. Of these individuals, 22 people with epilepsy and 16 support persons completed an in-depth interview. Rasch measurement models were used to evaluate the degree of difficulty of receiving or providing support often for nine self-management tasks. We analyzed model-data fit, person and item location along the support latent variable and differential person and item functioning. Qualitative methods were used to provide context and insight into the quantitative results. The results demonstrated good model-data fit. Help with seizures was the easiest type of support to receive or provide more often, followed by rides to a doctor's appointments and help avoiding seizure triggers. The most difficult types of support to receive or provide more often were reminders, particularly for taking and refilling medications. While most participants' responses fit the model, responses of several individuals misfit the model. Person misfit generally occurred because the scale items did not adequately capture some individuals' behaviors. These results could be useful in designing interventions that use support as a means of improving self-management. Additionally, the results provide information to improve or expand current measures of support for epilepsy self-management to better assess the experiences of people with epilepsy and their support persons.

Perspectives of adults with epilepsy and their support persons on self-management support.

Social support is an important mechanism for improving self-management, although little is known about its role in epilepsy self-management. We examined the type of support provided to people with epilepsy and its influence on self-management. We conducted in-depth interviews with 22 people with epilepsy and 16 support persons, representing 14 pairs and 10 unpaired individuals. We analyzed the data using principles of grounded theory. Supporters, who were mainly parents and spouses, aided people with epilepsy in every dimension of self-management. Support for self-management occurred along a continuum from person with epilepsy-led management to support person-led management. Where the pairs fell on the continuum depended on developmental stage, relationship type, and relationship dynamics. Seizure control shaped individuals' experiences with self-management and support within each group. The self-management continuum provides a new aspect that can be integrated into existing models of self- and family management.

Mentor training for junior faculty: a brief evaluation report from the Georgia Clinical and Translational Science Alliance.

To provide a foundation for mentoring, junior faculty participated in a mentor training workshop informed by the Mentoring Clinical and Translational Researchers curriculum. The goal was to develop skills and behaviors that engender more rewarding and inclusive mentoring practices. Attendees responded to baseline and follow-up surveys assessing perceived mentoring skills. Follow-up surveys included closed- and open-ended questions about the value and satisfaction of the training, and intended behavior changes. Junior faculty respondents (n = 39) reported significantly higher overall mentoring skills after the training (t = -2.6, p = 0.012) with a medium effect size (Cohen's D = 0.59). Domains with statistically significant improvement from baseline to follow-up included aligning mentor-mentee expectations and assessing understanding. Thirty-eighty (97%) found the training valuable, and 32 (82%) indicated they would change mentoring-related behaviors because of the training. Intended behavior changes described in open-ended responses aligned with mentoring skills assessed (e.g., aligning expectations). An additional competency domain of evaluating mentoring relationships was also described. A mentor training workshop for junior faculty appeared to contribute to changes in mentoring skills and intended behaviors. Mentor training has the potential to enhance mentorship, which is critical to strengthening a diverse pipeline of clinical and translational science researchers.

A mixed-methods approach to understanding the perspectives, experiences, and attitudes of a culturally tailored cognitive behavioral therapy/motivational interviewing intervention for African American patients with type 2 diabetes: a randomized parallel design pilot study.

BACKGROUND: African American (AA) adults are 60% more likely to be diagnosed with diabetes mellitus (DM) and experience more complications than non-Hispanic White adults. Cognitive behavioral therapy (CBT) has shown to be an effective modality for helping patients improve health behaviors and regulate emotional states. Motivational interviewing (MI) addresses participant engagement and motivation. Therefore, MI was combined with CBT as an approach to the process of learning using CBT skills to promote healthy lifestyle choices. We aimed to assess the effects of a culturally tailored CBT/MI intervention on glycemic control in AA participants and understand their perspectives, attitudes, and experiences while participating in this intervention. METHODS: Using a randomized, parallel design pilot study (web-based group vs in-person group), 20 participants aged ≥ 18 years, identifying as AA and having a glycosylated hemoglobin (HbA1c) > 8%, were recruited. A CBT/MI intervention was administered in six sessions over 3 months. Participants completed baseline and follow-up assessments on measures for diabetes control (HbA1c), self-efficacy, generalized anxiety, depression, perceived stress, health-related quality of life, and cognitive ability. Post-CBT/MI intervention focus groups were conducted to determine patient perspectives regarding the intervention. RESULTS: Fourteen participants completed the study, their mean HbA1c improved from 10.0 to 8.9% (t(26) = 0.5, p-value = 0.06). The Diabetes Distress Scale demonstrated decreased distress overall (t(26) = 2.6; p-value = 0.02). The Generalized Anxiety Disorder Scale demonstrated decreased generalized anxiety for all participants (t(26) = 2.2; p = 0.04). Themes identified in focus groups included (1) intervention group social support through information sharing, (2) mental health and personal identities in diabetes understanding and management, and (3) receptivity to CBT/MI intervention positively impacts self-efficacy through improved health literacy. CONCLUSION: This group-based, culturally tailored CBT/MI intervention for type 2 DM care was positively received by AA participants and helped improve diabetes control, as demonstrated by the change in HbA1c. There were additional benefits of social support through group interactions and a stronger sense of self-efficacy due to health education. A comprehensive treatment plan using a CBT/MI intervention may be useful in promoting healthy diabetes self-management. TRIAL REGISTRATION: ClinicalTrials.gov , NCT03562767 . Registered on 19 June 2018.

Impact of Georgia's teenage and adult driver responsibility act: 15-year follow-up.

OBJECTIVE: This study was designed to investigate the 15-year impact of Georgia's graduated drivers' licensing (GDL) law, the "Teenage and Adult Driver Responsibility Act" (TADRA), on fatality crashes among young drivers. METHODS: Fatality Analysis Reporting System (FARS) data for Georgia and Census denominators were used to determine fatal crash rates (FCRs) of drivers ages 16 through 19 who passed through the Georgia GDL system during the 5.5 years prior to through 15.5 years after TADRA's implementation. FCRs of younger drivers were compared to those of drivers ages 20-54 and 55-75 and compared by gender. Attention was given to speeding- and alcohol-related crashes, 2 foci of TADRA. RESULTS: The decline in FCRs has been maintained and even increased through 15.5 years after passage of the law. Extending the curfew and further limiting passengers (passed in 2001) and driver's education and supervised driving requirements (added in 2007) may have contributed. The greatest declines were among 16- and 17-year-olds; most of the gains were among male drivers. The changes were greatest for alcohol- and speeding-related crashes. Those 18 and 19 years old did not demonstrate an increase in FCR over the period studied. CONCLUSION: Georgia's graduated licensing law, TADRA, has maintained and in some instances increased in effectiveness over the 15.5 years since its inception. Though national research suggests that GDL laws are associated with increased crash rates among 18- to 19-year-old drivers, this has not occurred in Georgia; 18- and 19-year-olds demonstrated no change or reductions in FCR over the 20.5-year period evaluated. Declines were greatest for those driving behaviors targeted by the law.

Mortality in mental disorders and global disease burden implications: a systematic review and meta-analysis.

IMPORTANCE: Despite the potential importance of understanding excess mortality among people with mental disorders, no comprehensive meta-analyses have been conducted quantifying mortality across mental disorders. OBJECTIVE: To conduct a systematic review and meta-analysis of mortality among people with mental disorders and examine differences in mortality risks by type of death, diagnosis, and study characteristics. DATA SOURCES: We searched EMBASE, MEDLINE, PsychINFO, and Web of Science from inception through May 7, 2014, including references of eligible articles. Our search strategy included terms for mental disorders (eg, mental disorders, serious mental illness, and severe mental illness), specific diagnoses (eg, schizophrenia, depression, anxiety, and bipolar disorder), and mortality. We also used Google Scholar to identify articles that cited eligible articles. STUDY SELECTION: English-language cohort studies that reported a mortality estimate of mental disorders compared with a general population or controls from the same study setting without mental illness were included. Two reviewers independently reviewed the titles, abstracts, and articles. Of 2481 studies identified, 203 articles met the eligibility criteria and represented 29 countries in 6 continents. DATA EXTRACTION AND SYNTHESIS: One reviewer conducted a full abstraction of all data, and 2 reviewers verified accuracy. MAIN OUTCOMES AND MEASURES: Mortality estimates (eg, standardized mortality ratios, relative risks, hazard ratios, odds ratios, and years of potential life lost) comparing people with mental disorders and the general population or people without mental disorders. We used random-effects meta-analysis models to pool mortality ratios for all, natural, and unnatural causes of death. We also examined years of potential life lost and estimated the population attributable risk of mortality due to mental disorders. RESULTS: For all-cause mortality, the pooled relative risk of mortality among those with mental disorders (from 148 studies) was 2.22 (95% CI, 2.12-2.33). Of these, 135 studies revealed that mortality was significantly higher among people with mental disorders than among the comparison population. A total of 67.3% of deaths among people with mental disorders were due to natural causes, 17.5% to unnatural causes, and the remainder to other or unknown causes. The median years of potential life lost was 10 years (n = 24 studies). We estimate that 14.3% of deaths worldwide, or approximately 8 million deaths each year, are attributable to mental disorders. CONCLUSIONS AND RELEVANCE: These estimates suggest that mental disorders rank among the most substantial causes of death worldwide. Efforts to quantify and address the global burden of illness need to better consider the role of mental disorders in preventable mortality.

Race, Ethnicity, Substance Use, and Unwanted Sexual Intercourse among Adolescent Females in the United States.

INTRODUCTION: The purpose of this study was to examine racial/ethnic disparities in being forced to have sexual intercourse against one's will, and the effect of substance use on these disparities. METHODS: We analyzed data from adolescent women participating in the Youth Risk Behavior Survey. Bivariate associations and logistic regression models were assessed to examine associations among race/ethnicity, forced sex, and substance use behaviors. RESULTS: Being forced to have intercourse against one's will and substance use behaviors differed by race/ethnicity. African Americans had the highest prevalence of having been forced to have sexual intercourse (11.2%). Hispanic adolescent women were the most likely to drink (76.1%), Caucasians to binge drink (28.2%), and African Americans to use drugs (44.3%). When forced sexual intercourse was regressed onto both race/ethnicity and substance use behaviors, only substance use behaviors were significantly associated with forced sexual intercourse. CONCLUSION: Differences in substance use behaviors account for the racial/ethnic differences in the likelihood of forced sexual intercourse. Future studies should explore the cultural and other roots of the racial/ethnic differences in substance use behavior as a step toward developing targeted interventions to prevent unwanted sexual experiences.