Experiences of using the MINDSET Self-Management mobile health app among Hispanic Patients:Results of a qualitative study.

BACKGROUND: Interventions focusing on epilepsy self-management (ESM) are vital for promoting the health of people living with epilepsy. E-technology and mobile health (mHealth) tools are becoming increasingly integrated into practice to promote self-management strategies for chronic diseases, enhance care delivery, and reduce health disparities. Management Information and Decision Support Epilepsy Tool (MINDSET), a bilingual decision support tool (available in English and Spanish), was found to be both feasible and effective in facilitating goal-based ESM in the clinic. PURPOSE: To assess the experience of using MINDSET as an ESM intervention among Hispanic patients with epilepsy to inform future interventional studies. METHODS: This study used a Qualitative Descriptive (QD) framework to provide a rich and straightforward description of patients' subjective experiences using MINDSET. Participants were enrolled in the intervention group of a larger parent study (RCT) to assess the efficacy of MINDSET among Hispanic People with Epilepsy (PWE). The purposive, convenient, criterion-based sample for this qualitative analysis comprised of 42 patients who agreed to participate in a semi-structured interview at the end of the larger RCT. This RCT was conducted between August 2017 and January 2019. Spanish and English-speaking Hispanic adult patients (n = 94) with epilepsy in Arizona (n = 53) and Texas (n = 41) were randomly assigned within 6 neurology clinics to treatment (MINDSET plus Usual Care, hereafter referred to as MINDSET; n = 46) and comparison (Usual Care Only; n = 48) conditions. RESULTS: Patient demographics, epilepsy conditions, and ESM behavioral characteristics were representative of the intervention group. Study participants were Hispanic, mainly of Mexican descent (94 %), with a mean age of 39 years, mostly female (53 %), and most of the participants reported having had one or more seizures per month (54 %). The MINDSET intervention revealed five ESM themes: (1) Awareness and Realization of Epilepsy Self-Management, (2) Communication and Partnership with Health Care Providers HCP, (3) Epilepsy Self-Management and Quality of Life, (4) Seizure Control, and (5) Optimism and Agency. CONCLUSION: The participants who used MINDSET as a self-management intervention reported an overall positive experience. Qualitative data in this study show that MINDSET is a valuable ESM tool for Hispanic patients with epilepsy. Findings from this qualitative study were consistent with results from a larger parent study that recognized MINDSET as an effective platform for improving epilepsy self-management adherence.

The global cost of epilepsy: A systematic review and extrapolation.

OBJECTIVE: Global action for epilepsy requires information on the cost of epilepsy, which is currently unknown for most countries and regions of the world. To address this knowledge gap, the International League Against Epilepsy Commission on Epidemiology formed the Global Cost of Epilepsy Task Force. METHODS: We completed a systematic search of the epilepsy cost-of-illness literature and identified studies that provided a comprehensive set of direct health care and/or indirect costs, followed standard methods of case identification and cost estimation, and used data on a representative population or subpopulation of people with epilepsy. Country-specific costs per person with epilepsy were extracted and adjusted to generate an average cost per person in 2019 US dollars. For countries with no cost data, estimates were imputed based on average costs per person of similar income countries with data. Per person costs for each country were then applied to data on the prevalence of epilepsy from the Global Burden of Disease collaboration adjusted for the treatment gap. RESULTS: One hundred one cost-of-illness studies were included in the direct health care cost database, 74 from North America or Western Europe. Thirteen studies were used in the indirect cost database, eight from North America or Western Europe. The average annual cost per person with epilepsy in 2019 ranged from $204 in low-income countries to $11 432 in high-income countries based on this highly skewed database. The total cost of epilepsy, applying per person costs to the estimated 52.51 million people in the world with epilepsy and adjusting for the treatment gap, was $119.27 billion. SIGNIFICANCE: Based on a summary and extrapolations of this limited database, the global cost of epilepsy is substantial and highly concentrated in countries with well-developed health care systems, higher wages and income, limited treatment gaps, and a relatively small percentage of the epilepsy population.

The economic burden of caregiving in epilepsy: An estimate based on a survey of US caregivers.

OBJECTIVE: The burden of caregiving for persons with epilepsy (PWEs) has not been examined previously in the United States. We assessed the clinical impact and direct and indirect economic costs for caregivers of PWEs. METHODS: An internet survey of 500 caregivers of PWEs was conducted from May to July 2015 using a combination of validated instruments and questions designed specifically for this survey. Caregivers were stratified by PWE age (adult/child) and disease severity (low: 0 vs high: 1 + seizures in the prior month). Annual self-reported direct and indirect costs were reported per caregiver and extrapolated to all US caregivers. The economic burden of caregiving for PWEs was defined as the difference between costs for caregivers and the general population. RESULTS: Caregivers reported that PWEs averaged 11.4 seizures in the prior month. Eighty percent of respondents were female and the average age was 44.3. Since becoming a caregiver, many reported anxiety (52.8%), depression (41.0%), and insomnia (30.8%). Annual mean direct medical costs for caregivers of children with low vs high seizure frequency were $4344 and $10 162, respectively. Costs for caregivers of adult PWEs were $4936 and $8518. Mean indirect costs associated with caregiving for a child with low vs high seizure frequency were $20 529 and $40 137; those for caregivers of an adult were $13 981 and $28 410. The cost estimates are higher vs the general US population; annual per-person healthcare utilization costs were $2740 and productivity loss costs were $5015. When extrapolating to the US population of PWE caregivers, annual costs exceeded $62 billion vs $14 billion for the general population, resulting in a caregiver burden of nearly $48 billion. SIGNIFICANCE: The clinical and economic burden of caregivers for PWE were substantial, and greatest for those caring for children with frequent seizures. The impact on caregivers should be considered when estimating the value of interventions that control epilepsy.

MINDSET: Clinic-based decision support demonstrates longitudinal efficacy for increased epilepsy self-management adherence among Spanish speaking patients.

BACKGROUND: MINDSET, a bilingual (Eng./Span.) decision support tool was found feasible for facilitating goal-based epilepsy self-management (ESM) in the clinic. PURPOSE: To evaluate the efficacy of MINDSET to increase ESM adherence among Hispanic patients. METHODS: A RCT was conducted from August 2017 through January 2019. Spanish and English speaking Hispanic adult patients (n=94) with epilepsy in Arizona (n=53) and Texas (n=41) were randomly assigned within 6 neurology clinics to treatment (MINDSET plus Usual Care, hereafter referred to as MINDSET; n=46) and comparison (Usual Care Only; n=48) conditions. Self-reported self-management behavior (assessed through the Epilepsy Self-management scale) were categorized as adherent if performed 'usually' or 'always.' The proportion of adherence was compared between study conditions for 36 individual ESM behaviors and 5 ESM domains using Fischer's exact test. RESULTS: The average time between visit 1 through 3 was 350+/-79 days with retention at 96.8%. Participants in the treatment condition had more college education and less unemployment. Self-management adherence improved across visits for all self-management behaviors irrespective of study condition. Compared to usual care MINDSET use led to greater ESM adherence for 86.1% behaviors (5 with statistical significance; p<0.05) and to significant improvement in the ESM domain of 'information management' (p<0.05). CONCLUSIONS: Implementation of MINDSET within regular neurology visits may assist Hispanic adults with epilepsy to increase their adherence to ESM behaviors and maintain this adherence longitudinally. Replication with a broader demographic population of people with epilepsy is indicated.

Impact of Serious Mental Illness on Medicaid and Other Public Healthcare Costs in Texas.

Medicaid-enrolled adults with serious mental illness may be dually-enrolled in Medicare, and may receive health care services from other state and local programs. To understand cross-program costs of care, we linked 2012 payment data across Medicaid, Medicare, state, and local programs. Average costs were calculated according to presence/absence of SMI, Medicare coverage, SSI coverage, medical comorbidities, and other characteristics. Costs for Medicaid adults with SMI were 57.4% greater than adults without SMI, but only 23.6% of costs were SMI-related. Greater costs were associated with Medicaid-Medicare dual-eligibility, multiple SMI diagnoses, and medical comorbidities. The results support cross-program efforts such as joint Medicaid-Medicare managed care and integrated care.

The primary prevention of epilepsy: A report of the Prevention Task Force of the International League Against Epilepsy.

Among the causes of epilepsy are several that are currently preventable. In this review, we summarize the public health burden of epilepsy arising from such causes and suggest priorities for primary epilepsy prevention. We conducted a systematic review of published epidemiologic studies of epilepsy of 4 preventable etiologic categories-perinatal insults, traumatic brain injury (TBI), central nervous system (CNS) infection, and stroke. Applying consistent criteria, we assessed the quality of each study and extracted data on measures of risk from those with adequate quality ratings, summarizing findings across studies as medians and interquartile ranges. Among higher-quality population-based studies, the median prevalence of active epilepsy across all ages was 11.1 per 1000 population in lower- and middle-income countries (LMIC) and 7.0 per 1000 in high-income countries (HIC). Perinatal brain insults were the largest attributable fraction of preventable etiologies in children, with median estimated fractions of 17% in LMIC and 15% in HIC. Stroke was the most common preventable etiology among older adults with epilepsy, both in LMIC and in HIC, accounting for half or more of all new onset cases. TBI was the attributed cause in nearly 5% of epilepsy cases in HIC and LMIC. CNS infections were a more common attributed cause in LMIC, accounting for about 5% of all epilepsy cases. Among some rural LMIC communities, the median proportion of epilepsy cases attributable to endemic neurocysticercosis was 34%. A large proportion of the overall public health burden of epilepsy is attributable to preventable causes. The attributable fraction for perinatal causes, infections, TBI, and stroke in sum reaches nearly 25% in both LMIC and HIC. Public health interventions addressing maternal and child health care, immunizations, public sanitation, brain injury prevention, and stroke prevention have the potential to significantly reduce the burden of epilepsy.

Rationale and Design of a Statewide Cohort to examine efficient resource utilization for patients with Intracerebral hemorrhage (EnRICH).

BACKGROUND: Intracerebral hemorrhage is a devastating disease with no specific treatment modalities. A significant proportion of patients with intracerebral hemorrhage are transferred to large stroke treatment centers, such as Comprehensive Stroke Centers, because of perceived need for higher level of care. However, evidence of improvement in patient-centered outcomes for these patients treated at larger stroke treatment centers as compared to community hospitals is lacking. METHODS / DESIGN: "Efficient Resource Utilization for Patients with Intracerebral Hemorrhage (EnRICH)" is a prospective, multisite, state-wide, cohort study designed to assess the impact of level of care on long-term patient-centered outcomes for patients with primary / non-traumatic intracerebral hemorrhage. The study is funded by the Texas state legislature via the Lone Star Stroke Research Consortium. It is being implemented via major hub hospitals in large metropolitan cities across the state of Texas. Each hub has an extensive network of "spoke" hospitals, which are connected to the hub via traditional clinical and administrative arrangements, or by telemedicine technologies. This infrastructure provides a unique opportunity to track outcomes for intracerebral hemorrhage patients managed across a health system at various levels of care. Eligible patients are enrolled during hospitalization and are followed for functional, quality of life, cognitive, resource utilization, and dependency outcomes at 30 and 90 days post discharge. As a secondary aim, an economic analysis of the incremental cost-effectiveness of treating intracerebral hemorrhage patients at higher levels of care will be conducted. DISCUSSION: Findings from EnRICH will provide much needed evidence of the effectiveness and efficiency of regionalized care for intracerebral hemorrhage patients. Such evidence is required to inform policy and streamline clinical decision-making.

MINDSET: Clinical feasibility of utilizing the revised epilepsy self-management tool for Spanish speaking patients.

This paper describes the expanded English/Spanish version of the Management Information and Decision Support Epilepsy Tool (MINDSET) as well as the methods and findings from a feasibility study conducted from July 2016 through February 2017 with 43 Spanish and English-speaking Hispanic people living with epilepsy (PWE) in Arizona (n = 23) and Texas (n = 20) over two consecutive regular clinic visits. The expansion of MINDSET added goal setting and strategy selection to improve self-management (S-M) in PWE. The previous study tested the feasibility of English MINDSET, which was designed to facilitate the identification and discussion of S-M issues between the patient and healthcare provider (HCP) during a regular clinic visit. Results indicate MINDSET feasibility for use in the following: 1) identifying S-M issues across several domains; 2) selecting and assessing confidence in tailored S-M goals/strategies for improvement; 3) discussing S-M issues/goals/strategies/confidence with a HCP; and 4) creating an action plan (AP) and tracking achievement during regular clinic visits. Across two visits, 80-90% of patients agreed that the revised version of MINDSET was helpful, understandable, trustworthy, promoted careful thinking about management, was of appropriate duration, and would be helpful in future management and communication with HCP. Participating HCPs agreed that MINDSET improved the ease, thoroughness, and accuracy in identifying patient S-M issues and establishing a plan for improvement.

Correlates of epilepsy self-management in MEW Network participants: From the Centers for Disease Control and Prevention Managing Epilepsy Well Network.

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.

m-Health Policy Readiness and Enabling Factors: Comparisons of Sub-Saharan Africa and Organization for Economic Cooperation and Development Countries.

BACKGROUND: As an innovative solution to poor access to care in low- and middle-income countries (LMICs), m-health has gained wide attention in the past decade. INTRODUCTION: Despite enthusiasm from the global health community, LMICs have not demonstrated high uptake of m-health promoting policies or public investment. MATERIALS AND METHODS: To benchmark the current status, this study compared m-health policy readiness scores between sub-Saharan Africa and high-income Organization for Economic Cooperation and Development (OECD) countries using an independent two-sample t test. In addition, the enabling factors associated with m-health policy readiness were investigated using an ordinal logistic regression model. The study was based on the m-health policy readiness scores of 112 countries obtained from the World Health Organization Third Global Survey on e-Health. RESULTS: The mean m-health policy readiness score for sub-Saharan Africa was statistically significantly lower than that for OECD countries (p = 0.02). The enabling factors significantly associated with m-health policy readiness included information and communication technology development index (odds ratio [OR] 1.57; 95% confidence interval [CI] 1.12-2.2), e-health education for health professionals (OR 4.43; 95% CI 1.60-12.27), and the location in sub-Saharan Africa (OR 3.47; 95% CI 1.06-11.34). DISCUSSION: The findings of our study suggest dual policy goals for m-health in sub-Saharan Africa. First, enhance technological and educational support for m-health. Second, pursue global collaboration for building m-health capacity led by sub-Saharan African countries with hands-on experience and knowledge. CONCLUSION: Globally, countries should take a systematic and collaborative approach in pursuing m-health policy with the focus on technological and educational support.

Delays in Seeking Health Care: Comparison of Veterans and the General Population.

OBJECTIVES: Recent reports of delays in receiving care among U.S. Veterans have received national attention. Such delays may have an effect on veterans' propensity to seek healthcare as well, which could be detrimental to their health. There exists no evidence at the national level of the magnitude of perceived care delay in the Veterans Affairs (VA) system and how it compares to populations with other types of insurance coverage in the U.S. STUDY DESIGN AND METHODS: This cross-sectional study analyzed a recent nationally representative survey database (n = 10,907). Descriptive and multivariate regression analyses were performed to determine how care delay for veterans compares with the general population. RESULTS: We found that 17.2% of Americans delayed seeking needed healthcare in 2010-2011, but the figure was 29% for veterans. Also, there was a significant association of care delay with VA health care coverage after adjusting for other personal factors and region of the country. CONCLUSIONS: Study results suggest a possible link between VA access problems and veterans' behavior in seeking needed healthcare, which may be creating disparities in the effectiveness of care for this vulnerable and deserving population. Our study provides evidence of self-reported care delay among veterans. More studies are necessary to further understand factors in relation to delaying seeking care among veterans.

Predictors of psychiatric readmission among patients with bipolar disorder at an academic safety-net hospital.

OBJECTIVE: Even with treatment, approximately one-third of patients with bipolar disorder relapse into depression or mania within 1 year. Unfavorable clinical outcomes for patients with bipolar disorder include increased rates of psychiatric hospitalization and functional impairment. However, only a few studies have examined predictors of psychiatric hospital readmission in a sample of patients with bipolar disorder. The purpose of this study was to examine predictors of psychiatric readmission within 30 days, 90 days and 1 year of discharge among patients with bipolar disorder using a conceptual model adapted from Andersen's Behavioral Model of Health Service Use. METHODS: In this retrospective study, univariate and multivariate logistic regression analyses were conducted in a sample of 2443 adult patients with bipolar disorder who were consecutively admitted to a public psychiatric hospital in the United States from 1 January to 31 December 2013. RESULTS: In the multivariate models, several enabling and need factors were significantly associated with an increased risk of readmission across all time periods examined, including being uninsured, having ⩾3 psychiatric hospitalizations and having a lower Global Assessment of Functioning score. Additional factors associated with psychiatric readmission within 30 and 90 days of discharge included patient homelessness. Patient race/ethnicity, bipolar disorder type or a current manic episode did not significantly predict readmission across all time periods examined; however, patients who were male were more likely to readmit within 1 year. The 30-day and 1-year multivariate models showed the best model fit. CONCLUSION: Our study found enabling and need factors to be the strongest predictors of psychiatric readmission, suggesting that the prevention of psychiatric readmission for patients with bipolar disorder at safety-net hospitals may be best achieved by developing and implementing innovative transitional care initiatives that address the issues of multiple psychiatric hospitalizations, housing instability, insurance coverage and functional impairment.

Physician report of industry gifts and quality of care.

BACKGROUND: Physician financial conflict of interest is a concern in the delivery of medicine because of its possible influence on the cost and the quality of patient care. There has been an extensive discussion of the ethical, economic, and legal aspects of this issue but little direct empirical evidence of its magnitude or effects. METHODOLOGY: A nationally representative survey (n = 4,720) was used to empirically examine physician self-report of receipt of financial gifts from the pharmaceutical and medical devices industry and its association with their ability to provide quality care. FINDINGS: Results indicate that the vast majority of physicians receive industry gifts in various forms, and the receipt of gifts is associated with lower perceived quality of patient care. There is also an inverse relationship between the frequency of received gifts and the perceived quality of care. PRACTICE IMPLICATIONS: Physicians need to be aware of the widespread receipt of industry gifts in medical practice and the potential adverse impact of such receipts on the delivery of care.

The direct cost of epilepsy in the United States: A systematic review of estimates.

OBJECTIVE: To develop estimates of the direct cost of epilepsy in the United States for the general epilepsy population and sub-populations by systematically comparing similarities and differences in types of estimates and estimation methods from recently published studies. METHODS: Papers published since 1995 were identified by systematic literature search. Information on types of estimates, study designs, data sources, types of epilepsy, and estimation methods was extracted from each study. Annual per person cost estimates from methodologically similar studies were identified, converted to 2013 U.S. dollars, and compared. RESULTS: From 4,104 publications discovered in the literature search, 21 were selected for review. Three were added that were published after the search. Eighteen were identified that reported estimates of average annual direct costs for the general epilepsy population in the United States. For general epilepsy populations (comprising all clinically defined subgroups), total direct healthcare costs per person ranged from $10,192 to $47,862 and epilepsy-specific costs ranged from $1,022 to $19,749. Four recent studies using claims data from large general populations yielded relatively similar epilepsy-specific annual cost estimates ranging from $8,412 to $11,354. Although more difficult to compare, studies examining direct cost differences for epilepsy sub-populations indicated a consistent pattern of markedly higher costs for those with uncontrolled or refractory epilepsy, and for those with comorbidities. SIGNIFICANCE: This systematic review found that various approaches have been used to estimate the direct costs of epilepsy in the United States. However, recent studies using large claims databases and similar methods allow estimation of the direct cost burden of epilepsy for the general disease population, and show that it is greater for some patient subgroups. Additional research is needed to further understand the broader economic burden of epilepsy and how it varies across subpopulations.

Longitudinal feasibility of MINDSET: a clinic decision aid for epilepsy self-management.

The purpose of this paper is to report on the development and feasibility of the longitudinal version of MINDSET, a clinical tool to assist patients and health-care providers in epilepsy self-management. A previous study described the feasibility of using MINDSET to identify and prioritize self-management issues during a clinic visit. This paper describes the development of the longitudinal version of MINDSET and feasibility test over multiple visits with a printed action plan for goal setting and the capacity for monitoring changes in self-management. Feasibility was assessed based on 1) postvisit patient and provider interviews addressing ease of use and usefulness, patient/provider communication, and shared decision-making and 2) the capacity of the tool to monitor epilepsy characteristics and self-management over time. Results indicate MINDSET feasibility for 1) identifying and facilitating discussion of self-management issues during clinic visits, 2) providing a printable list of prioritized issues and tailored self-management goals, and 3) tracking changes in epilepsy characteristics and self-management over time.

Newer antiepileptic drug use and other factors decreasing hospital encounters.

A retrospective analysis was conducted in one claims database and was confirmed in a second independent database (covering both commercial and government insurance plans between 11/2009 and 9/2011) for the understanding of factors influencing antiepileptic drug (AED) use and the role of AEDs and other health-care factors in hospital encounters. In both datasets, epilepsy cases were identified by AED use and epilepsy diagnosis coding. Variables analyzed for effect on hospitalization rates were as follows: (1) use of first-generation AEDs or second-generation AEDs, (2) treatment changes, and (3) factors that may affect AED choice. Lower rates of epilepsy-related hospital encounters (encounters with an epilepsy diagnosis code) were associated with use of second-generation AEDs, deliberate treatment changes, and treatment by a neurologist. Epilepsy-related hospital encounters were more frequent for patients not receiving an AED and for those with greater comorbidities. On average, patients taking ≥1 first-generation AED experienced epilepsy-related hospitalizations every 684days, while those taking ≥1second-generation AED were hospitalized every 1001days (relative risk reduction of 31%, p<0.01). Prescriptions for second-generation AEDs were more common among neurologists and among physicians near an epilepsy center. Use of second-generation AEDs, access to specialty care, and deliberate efforts to change medications following epilepsy-related hospital encounters improved outcomes of epilepsy treatment based on average time between epilepsy-related hospital encounters. These factors may be enhanced by public health policies, private insurance reimbursement policies, and education of patients and physicians.

Impact of the 2011 heat wave on mortality and emergency department visits in Houston, Texas.

BACKGROUND: Heat waves have been linked to increased risk of mortality and morbidity, and are projected to increase in frequency and intensity in a changing climate. Houston and other areas in Texas experienced an exceptional heat wave in the summer of 2011 producing the hottest August on record. This study aims to assess the health-related impact of this heat wave. METHODS: Distributed lag models were used to estimate associations between the 2011 heat wave and all-cause mortality and emergency department (ED) visits from May 1 through September 30 for the five-year period 2007-2011. The 2011 heat wave is defined as a continuous period from August 2 through 30, 2011 according to the heat advisories issued by the local National Weather Service office, and is included in the models as a dummy variable. We compared the estimated excess risk among the models with and without adjustment of continuous temperature and ozone. RESULTS: The 2011 heat wave in Houston was associated with a 3.6% excess risk in ED visits (95% CI: 0.6%, 6.6%) and 0.6% increase in mortality risk (95% CI: -5.5%, 7.1%). The elderly over 65 years of age were at the greatest risk in ED visits. These patterns are consistent across different heat-wave definitions, and results are similar when adjusting for continuous temperature and ozone. CONCLUSIONS: The 2011 heat wave in Houston had a substantial impact on ED visits and no significant impact on mortality. Our findings provide insights into local heat-wave and health preparations and interventions.

Survival Benefits of Treatment Access Among Underserved Breast Cancer Patients Diagnosed Through the Texas Breast and Cervical Cancer Services Program.

PURPOSE: The Texas Breast and Cervical Cancer Services (BCCS) program was established to address socioeconomic disparities in breast and cervical cancer screening and survival. This study examined the impact of the program on treatment and survival of breast cancer patients. METHODS: A retrospective analysis was performed using the Texas Cancer Registry data linked to the BCCS program data. The sample consisted of 40- to 64-year-old women screened and diagnosed with breast cancer through the BCCS program (participants) and similar women living in low socioeconomic status census tracts and diagnosed outside the program (comparison group) during 1995-2008. Regular screeners among the participants were also compared with the comparison group. RESULTS: Participants had lower rates of breast surgery and higher rates of chemotherapy as compared with the comparison group. Participants undergoing surgery had higher rates of mastectomy (as compared with breast-conserving surgery) and lower rates of adjuvant radiation therapy. Unadjusted survival rates were similar between the participants and the comparison group, and higher among regular screeners, which was primarily driven by stage at diagnosis. Adjusted survival rates were similar between the 3 groups. CONCLUSIONS: Although there are differences in the types of treatment provided to the participants and the comparison group, there is no evidence of guideline noncompliance or stage-inappropriate treatment provision in either of the groups. Despite being diagnosed with a more advanced stage, the participants had similar unadjusted and adjusted survival rates as the comparison group. Access to timely treatment improved survival and brought the underserved participants on par with the comparison group.

Psychosocial and sociodemographic associates of felt stigma in epilepsy.

BACKGROUND: Lack of a sufficient range in socioeconomic status (SES) in most prior studies of felt stigma and epilepsy has hampered the ability to better understand this association. METHODS: We assessed the burden and associates of felt stigma in 238 individuals with prevalent epilepsy aged 18 and older, comparing low SES with high SES. RESULTS: Reported levels of stigma were higher in low SES than in high SES (p<0.0001), and all psychosocial variables were associated with stigma, including depression severity (p<0.0001), knowledge of epilepsy (p=0.006), quality of life (p<0.0001), social support (p<0.0001), and self-efficacy (p=0.0009). Stigma was statistically significantly associated with quality of life in the low SES group and with depression severity and social support in the high SES group. CONCLUSIONS: Low SES alone did not account for felt stigma; rather, we found that quality of life, depressive symptoms, and social support have the greatest impact on reported felt stigma in individuals with prevalent epilepsy.

Surveillance of epilepsy and prevention of epilepsy and its sequelae: lessons from the Institute of Medicine report.

PURPOSE OF REVIEW: The Institute of Medicine's report, Epilepsy across the Spectrum: Promoting Health and Understanding contains two recommendations for increased epilepsy surveillance and one recommendation on prevention in epilepsy. Evidence supporting these recommendations and the information that can be gained from them is reviewed. RECENT FINDINGS: Existing epilepsy surveillance data are inadequate to address factors such as seizure type, syndrome, socioeconomic status, and race/ethnicity in large representative populations. Ongoing surveillance is needed with follow-up of people with epilepsy for adverse epilepsy outcomes so that interventions to prevent these outcomes can be formulated. Substantial barriers to receiving appropriate medical care exist for minorities and the uninsured with epilepsy; more information on these differences and their causes is needed. Lack of standardized study methods and data sources results in differences in medical service costs, care and treatments, and limited information on cost-effectiveness of specific healthcare services for epilepsy. SUMMARY: Future epilepsy surveillance should track incidence and prevalence over time, access to epilepsy care, direct and indirect costs, and the cost-effectiveness of treatment. Prevention efforts to decrease the occurrence of epilepsy and improve access and effectiveness of care will ameliorate adverse outcomes in epilepsy.