There are limited data on psychosocial functioning in young adults with epilepsy (YAWE) despite myriad milestones during this life stage. OBJECTIVE:The purpose of this study was to analyze aggregate data from the Managing Epilepsy Well Network Integrated Database (MEW-DB) from 15 studies to examine depressive symptoms and quality of life (QoL) in this understudied population. STUDY AIMS:(1) describe sociodemographic characteristics and (2) analyze sociodemographic variables and depressive symptoms as predictors of QoL of YAWE. METHODS:The MEW-DB was queried for all young adults ages 18-29 with completed standardized psychosocial measures of QoL, depressive symptoms, and sociodemographic information. Of 418 young adults, n = 237 from 11 studies had QoL data and n = 85 had complete data for regression modeling. Mood items were categorized into cognitive (COG) and somatic (SOM) phenotypes of depression symptoms. Multivariable regression models examined individual relationships for suicidality; COG; SOM; and total depression symptom score on QoL, adjusting for sociodemographic attributes. RESULTS:Total depression symptoms, suicidality, COG symptoms, and SOM symptoms were significantly associated with QoL. Total depression symptom score explained the most variance in QoL. CONCLUSIONS:This novel analysis leveraged aggregated data focused on epilepsy self-management. YAWE have not been well-studied as a stand-alone group. Separating the effects of cognitive and somatic symptoms of depression does not appear to be meaningful for understanding QoL as the effects of cognitive and somatic symptoms of depression appear similar. Future research needs to examine cognitive and somatic effects in greater detail to understand effects on QoL and other health-related outcomes.
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 gen-eral 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 implemen-tation 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 imple-mented 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 (commu-nity, 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 sev-eral 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 pro-gram 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 aver-aged 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 con-ducted 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. (c) 2023 Elsevier Inc. All rights reserved.
Education was not related to ESE or ESM; however, higher education was associated with lower anxiety severity. Higher ESM was associated with lower depression symptoms. While initial results are limited by the sample size, further exploration between level of education, mood, and anxiety and PWE's and their epilepsy self-management.
BACKGROUND: The National Multiple Sclerosis Society (NMSS) strives to ensure that people affected by multiple sclerosis (MS) can live their best lives. This mission is reflected in the Society's strategic plan, which establishes the roadmap for the Society's continued commitment to a world free of MS. OBJECTIVE: The purpose of this article is to add to the understanding of both the scope and complexity of the impact of MS and MS-related supports on quality of life (QOL). METHODS: A national sample of people with MS (n = 748) participated in the study by completing validated surveys assessing their QOL, physical and mental health, MS self-efficacy, resilience, participation in NMSS, perceived stress, emotional support, and social roles and activities. A path model was used to examine how the frequently identified MS QOL predictors, including demographic, MS, psychosocial, and physical functional status variables relate to each other and to QOL. RESULTS: The model exhibited reasonable model fit with hypothesized paths being statistically significant and in the hypothesized direction. CONCLUSION: Findings revealed that the relationships among mental health, demographic factors, overall MS experiences, QOL, NMSS participation, and resonance with the mission of the NMSS are complex, highly nuanced, and yet strongly correlated. More importantly, the study highlights the strong influence of variables that are more readily amenable to change through programmatic and clinical intervention, and active self-management and participation.
OBJECTIVE:The Managing Epilepsy Well (MEW) Network conducts epilepsy self-management (ESM) intervention development, testing, and archival clinical trials data analyses in the MEW Network Integrated Database (MEW-DB). However, not all trial participants fully benefit from ESM due to prematurely discontinuing program participation. This analysis sought to identify demographic and clinical predictors of premature discontinuation (PD) of ESM interventions available in the MEW-DB.METHODS:Data from prior studies were included if: 1) they were prospective trials testing an ESM intervention, 2) included baseline assessment and at least one post-intervention assessment, and 3) included data on PD. Dependent variables were all-cause PD, categorized as a binary variable (yes/no) and time to PD for the intervals between baseline and follow-up visit 1 (V1; approximately week 12) and visit two (V2; approximately week 24). Multivariable Cox proportional hazard models were used to identify factors affecting PD time-point. Explanatory variables included age, gender, race/ethnicity, education, employment, income, marital status, psychiatric comorbidities, depressive severity, anxiety symptoms, self-efficacy, number of anti-seizure medications (ASMs), health status, seizure frequency, and study design.RESULTS:Six prior MEW-DB studies were included, consisting of 627 people, where 624 were assigned to ESM or to control. PD among randomized individuals was 14.3 % by V1 and 15.7 % by V2. Predictors for V1 PD were treatment (ESM) vs. control arm, more severe depressive symptoms and having schizophrenia. Predictors for V2 PD were younger age, white race, more severe depressive symptoms and having schizophrenia.SIGNIFICANCE:While ESM approaches can improve multiple health outcomes among people with epilepsy, nearly one in six individuals prematurely discontinues their program. These findings suggest that ESM interventionists need to be particularly attentive to program retention over the first 3 months after ESM initiation. Younger people with epilepsy, those who self-identify as white, those with schizophrenia, and/or more severe depressive symptoms may need additional support for engagement.
The manual also offers tips for advocating in the work place and evaluating job performance. Although the appendices provide specific task lists and scripts, most of these materials relate to a limited range of service industry jobs. The Utah State group underscores that the manual and accompanying tapes are meant to be used as supplementary materials to a formal co-worker training program and should not stand alone as an avenue to co-worker training. Management must also accept that co-workers will have training responsibilities and have the appropriate work schedule to train the employee with a disability. Co-worker recording of trainee performance data and periodic visits from rehabilitation agency personnel need to be accepted and supported. There are a number of continuing concerns related to the establishment of a co-worker training program. Recent research and demonstration projects have drawn attention to alternative community-based models and the use of natural supports within the work place.
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-9(4) or Neurological Disease Depression Inventory-Epilepsy5 to examine the prevalence of ele-vated 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, ele-vated 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. (C) 2021 Elsevier Inc. All rights reserved.
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. (C) 2020 Elsevier Inc. All rights reserved.
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 (similar to 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 32 in the Project UPLIFT group, but increased by 23 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 22 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. (C) 2019 Elsevier Inc. All rights reserved.
Multiple sclerosis (MS) is a chronic, typically progressive immune-mediated disease characterized by inflammation and demyelination in the central nervous system (CNS), and is associated with a wide range of neurological, physical, and psychosocial effects. For people living with MS, access to relevant, timely, and accessible health information and resources may contribute to effective illness management, psychosocial health, and quality of life (QOL). In this study, we sought to increase understanding of the specific types of information most wanted by people with MS, as well as the sources and effects of this information. Specifically, we surveyed 748 adults with MS about (a) the sources from which they obtain information about MS, (b) the type of information that is most important in terms of improving their QOL, and (c) specific topics about which they would like to have more information, services, or resources. Content analysis of the qualitative results demonstrated the diversity of information sources accessed by people with MS and the importance of providing information through different formats and media. The participants prioritized information related to new MS medications and treatments, physical and mental health and wellness, and local opportunities for support. Implications for practicing rehabilitation counselors are discussed.
Objective The Program of Active Consumer Engagement in Self-Management in Epilepsy (PACES) is an evidenced-based self-management intervention for adults with epilepsy. Prior randomized controlled trial (RCT) data show that PACES reduces depression and improves self-management, self-efficacy, and quality of life for 6 months postprogram. The objective of this study was to replicate a PACES RCT with key extensions: more diverse patient pool from community-based epilepsy centers; option for telephone-based participation; and longer follow-up (12 months with booster support for intervention group), to examine duration of impact and inform dissemination and implementation. Methods Participants were adults with chronic epilepsy (n = 101) without serious mental illness or substantive intellectual impairment, recruited from three epilepsy centers. Participants were randomly assigned to intervention or waitlist control groups. Outcomes included the Epilepsy Self-Management Scale (ESMS), Epilepsy Self-Efficacy Scale (ESES), Quality of Life in Epilepsy-31, Patient Health Questionnaire-9, and Generalized Anxiety Disorder-7, administered at baseline, postintervention (8 weeks), and 6 and 12 months postintervention. Intervention was an 8-week group of five to eight adults co-led by a psychologist and trained peer with epilepsy that met once per week by teleconference or in person at a hospital for 60-75 minutes. Topics included medical, psychosocial, cognitive, and self-management aspects of epilepsy, as well as community integration and epilepsy-related communication. Treatment group provided program evaluation. Results PACES participants (n = 49) improved relative to controls (n = 52) on the ESES (P < .022) and overall distress composite (P = .008). At 6 months, PACES participants remained improved on the ESES (P = .008) and composite (P = .001), and were improved on the ESMS (P = .005). At 12 months, PACES participants remained improved on the ESMS (P = .006) and were improved on an overall distress composite of combined measures (P = .018). Attrition was low (<6% in each group), and all program satisfaction ratings exceeded 4.0/5.0. Significance A consumer-generated epilepsy self-management program with broad psychosocial and medical emphasis can be effectively delivered by telephone or in person and facilitates long-term epilepsy self-management, adjustment, and coping up to 1 year after treatment.
BACKGROUND: Multiple sclerosis (MS) is among the most prevalent chronic neurological conditions worldwide and is associated with a wide range of symptoms and psychosocial impacts. Quality of life (QOL) is recognized as a comprehensive and person-centered framework for exploring and understanding these impacts. Although there is a strong history of including people with MS in the development of health-related and patient-reported outcomes QOL instruments in MS, there have been relatively few large-scale qualitative investigations of what is important to the QOL of people with MS. As part of an ongoing evaluation by the National Multiple Sclerosis Society (NMSS), in which the NMSS is seeking to evaluate the impact of its work on the lives of people living with MS, we surveyed a sample of 748 Americans with MS about the areas of their life that are most important to their QOL. RESULTS: The results suggest that social relationships, health, independence, and participation in meaningful activities, including employment, were among their top priorities. The diversity of life areas identified underscores the importance of understanding the individual's unique priorities and experiences of QOL, and recognizing the diversity of the population. CONCLUSION: The results are discussed in terms of the implications for understanding of priorities and experiences of Americans living with MS.
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.
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.
Aim: There are limited data on psychological outcomes in older people with epilepsy (PWE). This analysis, from a large pooled dataset of clinical studies from the Managing Epilepsy Well (MEW) Network, examined clinical variables including depressive symptom severity, quality of life and epilepsy self-management competency among older (age 55+) vs younger (<age 55) PWE. We were particularly interested in differences between older vs younger individuals with clinically significant depression. Methods: Analyses used baseline data from 9 MEW Network studies and examined demographic and clinical variables. Older vs younger individuals were compared and then we assessed groups with clinically significant depression vs those without clinically significant depression using the PHQ-9 and QOLIE-10 as a measure of quality of life. Results: The sample included 935 individuals. Compared to younger adults (n=774), the older group (n=161) had a better quality of life (p=0.041) and more individuals without clinically significant depression (p=0.038). There was a trend for slightly lower depression severity scores (PHQ-9 total) (p=0.07) in the older group and a trend for fewer seizures (p=0.055) in older adults relative to younger adults. Conclusion: Compared to younger PWE, older PWE have less clinically significant depression and better quality of life. Future research needs to identify possible mechanisms underlying these differences.
Introduction Epilepsy has been reported by the CDC to have a prevalence of 1.2% in the United States, which accounts for roughly 3.4 million adults in 2015. Nearly 1 million of those adults are aged 55 or older.1 Epilepsy is more likely to develop in older adults because risk factors for epilepsy are more common as people age including stroke/cardiovascular disease, neurodegenerative disorders, brain tumor and long-term sequelae of alcohol abuse.2 As our population ages, there will be even more older people with epilepsy. A common comorbidity in epilepsy is depression. While the prevalence of depression in patients with epilepsy varies in literature, it is estimated to be between 15% and 37%.3 The significance of depressive symptoms on quality of life has been shown to be greater than that of short-term seizure control.4 For older people, balancing epilepsy treatment in conjunction with other health problems can present with great difficulty. Many antiepileptic's also have side effects such as bone loss, dizziness and greater risk for falls, which can make someone more likely to fall and become injured.5 This analysis, from a large pooled dataset of multiple epilepsy treatment studies, examined presence and symptom severity of depression in older adults (age > 55) with epilepsy in comparison to younger adults (age <55) with epilepsy. Methods Analysis was completed using baseline data and clinical variables from 9 studies of the Managing Epilepsy Well (MEW) Network integrated research database (MEW DB). Patients were divided into two groups; age 18-55 and age greater than or equal to 55. A total of 935 adults participated, out of which 161 (17.2 %) were of age 55 or greater and 774 adults younger than 55 (82.8 %). Other demographics included were gender, race, marital status, highest education level and annual income. Standardized rating scales included Quality of Life in Epilepsy (QOLIE-10) and Patient Health Questionnaire (PHQ-9) for depressive symptoms. The QOLIE-10 scoring was harmonized to accommodate slightly different versions of this scale within the integrated dataset. Results The mean age for older patients was 61.5 vs. 34.4 for younger patients. Approximately 60% of patients in both groups were females. Among older patients 109 (76.2%) were white, 24 (16.8%) African Americans, and 4 (3.1%) Hispanic. Majority of these patients (78.6%) had a college education and 53.4% were either married or co-habiting. Demographics of the under 55 group were largely similar. Mean PHQ-9 score was 8.5 in older patients vs. 9.5 in younger patients (p= 0.07). Amongst older patients, those with moderate-severe depression defined as PHQ-9 > 10 had an average of 7 seizures in 30 days, compared to those with scores <10 with an average of 2.7 seizures in 30 days (p=0.447). QOLIE-10 scores followed a similar pattern in that severe depression (PHQ 9 >10) in both younger and older groups was associated with worse QOL (p=<0.001). Conclusions Depression is common in people with epilepsy across the lifespan. Depression is more common in those with poorly controlled epilepsy, and more severe depressive symptoms are associated with poorer quality of life. However, we did not find that these findings were different in older vs. younger patients. Methodological limitations such as the clinical trials' data source and relatively young age of the sample overall could have biased findings. Future analyses need to sample more elderly people with epilepsy including the "old-old" and those with more extensive medical comorbidity. This research was funded by: This study was supported in part by CDC grants U48DP001930 (CWRU), U48DP005030 (CWRU) U48DP005008 (NYU), 148DP005013 (WA), and 1U48DP005018 (Geisel School of Medicine at Dartmouth) under the Health Promotion and Disease Prevention Research Centers Program.
Specialized vocational rehabilitation (VR) programs in epilepsy have routinely performed more successfully than general or state-federal VR programs. This article presents the key areas of emphasis in successful epilepsy VR program development to include initial program drivers, choice of VR services model, perspectives on program elements, clients, staffing, service evaluation metrics, operational considerations, and the partnering sponsor's personnel support. Considerable emphasis is placed on the importance and diversity of funding in sustaining a specialized epilepsy VR program. This template of considerations provides potential program implementers with a general framework for successful epilepsy VR program development.
While self-management (S-M) skills of people living with epilepsy (PWE) are increasingly recognized as important for daily functioning and quality of life, there is limited information on overall skill levels, specific areas needing improvement, or associated correlates. The purpose of this study was to provide evidence on the S-M skills of PWE and identify the demographic and clinical correlates that could be used in targeting interventions. Data were derived from the Managing Epilepsy Well (MEW) research network database containing epilepsy S-M data on 436 PWE participating in five studies conducted recently throughout the U.S. Common data elements included sociodemographics, clinical condition, and S-M behaviors covering five domains. Descriptive statistics and multivariate regression analyses found significant variation in total and domain-specific S-M skill levels and the associated characteristics of individuals. The findings from this national sample were remarkably consistent across sites and with existing theory and prior empirical studies indicating that competencies in information and lifestyle management were significantly lower than medication, safety, and seizure management. Self-management behavior levels were higher for females and those with less education, but lower in those with depression and lower quality of life. There were no significant differences by age, race/ethnicity, marital status, or seizure frequency after adjusting for other characteristics.