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1.
Epilepsy Behav ; 153: 109702, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38412570

ABSTRACT

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.


Subject(s)
Epilepsy , Mobile Applications , Self-Management , Telemedicine , Adult , Humans , Female , Male , Quality of Life , Epilepsy/therapy , Seizures , Hispanic or Latino
2.
Epilepsia ; 63(4): 892-903, 2022 04.
Article in English | MEDLINE | ID: mdl-35195894

ABSTRACT

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.


Subject(s)
Epilepsy , Health Care Costs , Cost of Illness , Epilepsy/epidemiology , Epilepsy/therapy , Humans , Income , Poverty , Prevalence
3.
Epilepsy Behav ; 113: 107552, 2020 12.
Article in English | MEDLINE | ID: mdl-33242775

ABSTRACT

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.


Subject(s)
Decision Support Systems, Clinical , Epilepsy/rehabilitation , Patient Compliance , Self-Management/methods , Adult , Arizona , Female , Humans , Male , Middle Aged , Texas
4.
Inquiry ; 57: 46958020923547, 2020.
Article in English | MEDLINE | ID: mdl-32513041

ABSTRACT

The Texas Medicaid Waiver, via the Delivery System Reform Incentive Payment (DSRIP) program, has provided a path for Texas to achieve the Triple Aim through its focus on a defined population at the project and system levels, and financial payment policy based on outcomes. Both iterations of the DSRIP program (Waiver 1.0 and 2.0) have helped define populations, created regional collaboration that sets the stage for a true integrator, and provided financial incentives for improving population health, enhancing patient experience, and controlling costs. The flexible design of project menus and measure bundles in DSRIP encouraged a variety of projects, numerous measures of success and (often) overlapping populations of individual served to achieve the ultimate goal of the Triple Aim. This research outlines the major features of Texas DSRIP and demonstrates the Medicaid Waiver effectively contributed to measurable improvements in health, suggesting Texas safety net providers are moving closer to Triple Aim achievement.


Subject(s)
Cost Savings , Health Care Reform/economics , Medicaid/economics , Population Health , Reimbursement, Incentive/economics , Safety-net Providers/economics , Delivery of Health Care , Humans , Medically Underserved Area , Texas , United States
5.
Am J Clin Oncol ; 43(7): 517-525, 2020 07.
Article in English | MEDLINE | ID: mdl-32304434

ABSTRACT

OBJECTIVE: To examine the association among tyrosine kinase inhibitor (TKI) out-of-pocket costs, adherence, and health care costs and utilization in a large group of commercially insured patients with chronic myeloid leukemia (CML). MATERIALS AND METHODS: Patients with CML aged 18 to 64 years were identified using IBM MarketScan Commercial Database between April 1, 2011 and December 31, 2014. Patients were required to be continuously enrolled 3 months before and 12 months after TKI (imatinib, dasatinib, or nilotinib) initiation. TKI adherence is estimated using the proportion of days covered (PDC), defined as the percentage of the PDC by the prescription fill during the 12-month study period (adherent patients have PDC ≥80%). Health care cost differences between adherent and nonadherent patients were estimated using generalized linear models. Health care utilization was compared using negative binomial regression models. All models were controlled for potential confounding factors. RESULTS: The study sample consisted of 863 patients, where 355 (41.1%) patients were classified as adherent. Over the study period, nonadherent patients incurred US$10,974 more in medical costs (P<0.001), and US$1663 more in non-TKI pharmacy costs (P<0.01). Adherent patients incurred US$28,184 more in TKI pharmacy costs (P<0.001) that resulted in US$18,305 more in overall total health care costs (P<0.001). Adherent patients, however, were estimated to be less likely to have all-cause hospitalizations (incidence rate ratio, 0.32; P<0.001), or CML-specific hospitalizations (incidence rate ratio, 0.31; P<0.01). CONCLUSIONS: Patients with CML with better adherence experienced fewer hospitalizations, resulting in medical service cost savings. These lower medical costs, however, were more than offset by higher TKI medication costs observed during the first year of TKI therapy.


Subject(s)
Health Care Costs , Leukemia, Myelogenous, Chronic, BCR-ABL Positive/drug therapy , Patient Acceptance of Health Care , Protein Kinase Inhibitors/economics , Protein Kinase Inhibitors/therapeutic use , Adolescent , Adult , Antineoplastic Agents/economics , Antineoplastic Agents/therapeutic use , Dasatinib/economics , Dasatinib/therapeutic use , Female , Humans , Imatinib Mesylate/economics , Imatinib Mesylate/therapeutic use , Insurance Claim Review , Male , Medication Adherence/statistics & numerical data , Middle Aged , Patient Acceptance of Health Care/statistics & numerical data , Pyrimidines/economics , Pyrimidines/therapeutic use , Retrospective Studies , Young Adult
6.
Epilepsia ; 61(2): 319-329, 2020 02.
Article in English | MEDLINE | ID: mdl-31953846

ABSTRACT

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.


Subject(s)
Caregivers/psychology , Epilepsy/economics , Adolescent , Adult , Child , Child, Preschool , Cost of Illness , Costs and Cost Analysis , Epilepsy/psychology , Female , Health Care Costs , Humans , Male , Middle Aged , Quality of Life , Surveys and Questionnaires , United States/epidemiology
7.
Circ Cardiovasc Qual Outcomes ; 12(9): e005606, 2019 09.
Article in English | MEDLINE | ID: mdl-31514521

ABSTRACT

BACKGROUND: Standard gamble (SG) directly measures patients' valuation of their health state. We compare in-hospital and day-90 SG utilities (SGU) among intracerebral hemorrhage patients and report a 3-way association between SGU, EuroQoL-5 dimension, and modified Rankin Scale at day 90. METHODS AND RESULTS: Patients with intracerebral hemorrhage underwent in-hospital and day-90 assessments for the modified Rankin Scale, EuroQoL-5 dimension, and SG. SG provides patients a choice between their current health state and a hypothetical treatment with varying chances of either perfect health or a painless death. Higher SGU (scale, 0-1) indicates lower risk tolerance and thus higher valuation of the current health state. Logistic regression was used to estimate the likelihood of low SGU (≤0.6), and Wilcoxon paired signed-rank test compared in-hospital and day-90 SGU. In-hospital and day-90 SG was obtained from 381 and 280 patients, respectively, including 236 paired observations. Median (interquartile range) in-hospital and day-90 SGUs were 0.85 (0.40-0.98) and 0.98 (0.75-1.00; P<0.001). In-hospital SGUs were lower with advancing age (P=0.007), higher National Institutes of Health Stroke Scale, and intracerebral hemorrhage scores (P<0.001). Proxy-based assessments resulted in lower SGUs; median difference (95% CI), -0.2 (-0.33 to -0.07). After adjustment, higher National Institutes of Health Stroke Scale and proxy assessments were independently associated with lower SGU, along with an effect modification of age by race. Day-90 SGU and modified Rankin Scale were significantly correlated; however, SGUs were higher than the EuroQoL-5 dimension utilities at higher modified Rankin Scale levels. CONCLUSIONS: Divergence between directly (SGU) and indirectly (EuroQoL-5 dimension) assessed utilities at high levels of functional disability warrant careful prognostication of intracerebral hemorrhage outcomes and should be considered in designing early end-of-life care discussions with families and patients.


Subject(s)
Cerebral Hemorrhage/diagnosis , Decision Support Techniques , Disability Evaluation , Gambling , Health Status Indicators , Health Status , Patient Outcome Assessment , Quality of Life , Activities of Daily Living , Aged , Cerebral Hemorrhage/mortality , Cerebral Hemorrhage/therapy , Choice Behavior , Clinical Decision-Making , Female , Humans , Male , Middle Aged , Patient Participation , Predictive Value of Tests , Prospective Studies , Risk Assessment , Risk Factors , Texas , Time Factors
8.
J Manag Care Spec Pharm ; 25(10): 1140-1150, 2019 Oct.
Article in English | MEDLINE | ID: mdl-31556823

ABSTRACT

BACKGROUND: For newly diagnosed chronic myeloid leukemia (CML) patients, early access to tyrosine kinase inhibitors (TKIs) is a consistent predictor of adherence and optimal response. The expense of targeted therapies, however, may result in high out-of-pocket costs for initiating therapy that could be a barrier to starting treatment. OBJECTIVE: To examine the association between TKI out-of-pocket costs, initiation, and health care utilization and costs among patients who initiated TKI within 12 months after initial CML diagnosis. METHODS: Individuals aged 18-64 years with an initial diagnosis of CML were identified in the IBM MarketScan Commercial Database between April 11, 2011, and December 31, 2014. The association between cost sharing and TKI initiation was evaluated using a multivariable logistic regression model applied to patients receiving therapy within a month of diagnosis and within 1-12 months after diagnosis. Health care utilization was compared using negative binomial regression models. Health care cost differences between the 2 patient groups were estimated using generalized linear models. All models were controlled for potential confounding factors. RESULTS: The study sample consisted of 477 patients, with 397 (83.2%) patients initiating TKI within the first month of CML diagnosis and 80 (16.8%) after the first month. Out-of-pocket costs for the initial 30-day supply of TKI medications were not found to be a significant predictor of TKI initiation time. Patients initiating therapy within a month were less likely to have all-cause hospitalizations (IRR = 0.35; P = 0.02) or CML-specific hospitalizations (IRR = 0.27; P < 0.01). Over the 12-month follow-up period, they incurred $9,923 more in TKI pharmacy costs (P < 0.05), but patients initiating therapy after the first month of diagnosis incurred $7,582 more in medical costs, $218 more in non-TKI pharmacy costs, and $2,680 more in total health care costs (P > 0.05). CONCLUSIONS: Patients with TKI initiation within the first month of diagnosis had higher TKI pharmacy costs that were partially offset by lower medical and non-TKI pharmacy costs, resulting in lower overall total health care costs. Findings suggest that earlier TKI initiation may reduce the risks of hospitalizations, which could result in potential medical cost savings in the first 12 months of treatment. DISCLOSURES: No outside funding supported this study. The authors have no relationships or financial interests to report with any entity that would pose a conflict of interest with the subject matter of this article. A poster presentation of the study was made at the 11th American Association for Cancer Research (AACR) Conference on The Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved, on November 2-5, 2018, in New Orleans, LA.


Subject(s)
Cost Sharing/statistics & numerical data , Leukemia, Myelogenous, Chronic, BCR-ABL Positive/drug therapy , Patient Acceptance of Health Care/statistics & numerical data , Protein Kinase Inhibitors/therapeutic use , Adolescent , Adult , Cost Sharing/economics , Drug Costs/statistics & numerical data , Female , Health Expenditures/statistics & numerical data , Hospitalization/economics , Hospitalization/statistics & numerical data , Humans , Leukemia, Myelogenous, Chronic, BCR-ABL Positive/economics , Male , Medication Adherence/statistics & numerical data , Middle Aged , Protein Kinase Inhibitors/economics , Retrospective Studies , United States , Young Adult
9.
Adm Policy Ment Health ; 46(4): 498-506, 2019 07.
Article in English | MEDLINE | ID: mdl-30888534

ABSTRACT

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.


Subject(s)
Health Care Costs/trends , Managed Care Programs/economics , Medicaid/economics , Mental Disorders/economics , Public Health/economics , Aged , Databases, Factual , Female , Humans , Male , Middle Aged , Texas , United States
10.
Healthc (Amst) ; 7(1): 44-50, 2019 Mar.
Article in English | MEDLINE | ID: mdl-29233529

ABSTRACT

INTRODUCTION: Adoption of Medicaid Section 1115 waiver is one of the many ways of innovating healthcare delivery system. The Delivery System Reform Incentive Payment (DSRIP) pool, one of the two funding pools of the waiver has four categories viz. infrastructure development, program innovation and redesign, quality improvement reporting and lastly, bringing about population health improvement. BACKGROUND: A metric of the fourth category, preventable hospitalization (PH) rate was analyzed in the context of eight conditions for two time periods, pre-reporting years (2010-2012) and post-reporting years (2013-2015) for two hospital cohorts, DSRIP participating and non-participating hospitals. The study explains how DSRIP impacted Preventable Hospitalization (PH) rates of eight conditions for both hospital cohorts within two time periods. METHODS: Eight PH rates were regressed as the dependent variable with time, intervention and post-DSRIP Intervention as independent variables. PH rates of eight conditions were then consolidated into one rate for regressing with the above independent variables to evaluate overall impact of DSRIP. An interrupted time series regression was performed after accounting for auto-correlation, stationarity and seasonality in the dataset. RESULTS: In the individual regression model, PH rates showed statistically significant coefficients for seven out of eight conditions in DSRIP participating hospitals. In the combined regression model, the coefficient of the PH rate showed a statistically significant decrease with negative p-values for regression coefficients in DSRIP participating hospitals compared to positive/increased p-values for regression coefficients in DSRIP non-participating hospitals. CONCLUSION AND IMPLICATIONS: Several macro- and micro-level factors may have likely contributed DSRIP hospitals outperforming DSRIP non-participating hospitals. Healthcare organization/provider collaboration, support from healthcare professionals, DSRIP's design, state reimbursement and coordination in care delivery methods may have led to likely success of DSRIP. LEVEL OF EVIDENCE: IV, a retrospective cohort study based on longitudinal data.


Subject(s)
Delivery of Health Care/methods , Organizational Innovation/economics , Health Care Reform/methods , Health Expenditures/standards , Health Expenditures/statistics & numerical data , Humans , Interrupted Time Series Analysis , Medicaid/organization & administration , Medicaid/statistics & numerical data , Patient Admission/statistics & numerical data , Retrospective Studies , Texas , United States
11.
Int Health ; 11(6): 463-471, 2019 11 13.
Article in English | MEDLINE | ID: mdl-30576546

ABSTRACT

BACKGROUND: Recently mobile health (mHealth) has been implemented in Kenya to support family planning. Our objectives were to investigate disparities in mobile phone ownership and to examine the associations between exposure to family planning messages through mHealth (stand-alone or combined with other channels such as public forums, informational materials, health workers, social media and political/religious/community leaders' advocacy) and contraceptive knowledge and use. METHODS: Logistic and Poisson regression models were used to analyze the 2014 Kenya Demographic and Health Survey. RESULTS: Among 31 059 women, 86.7% had mobile phones and were more likely to have received higher education, have children ≤5 y of age and tended to be wealthier or married. Among 7397 women who were sexually active, owned a mobile phone and received family planning messages through at least one channel, 89.8% had no exposure to mHealth. mHealth alone was limited in improving contraceptive knowledge and use but led to intended outcomes when used together with four other channels compared with other channels only (knowledge: incidence rate ratio 1.084 [95% confidence interval {CI} 1.063-1.106]; use: odds ratio 1.429 [95% CI 1.026-1.989]). CONCLUSIONS: Socio-economic disparities existed in mobile phone ownership, and mHealth alone did not improve contraceptive knowledge and use among Kenyan women. However, mHealth still has potential for family planning when used with existing channels.


Subject(s)
Cell Phone/statistics & numerical data , Family Planning Services/organization & administration , Health Promotion/organization & administration , Telemedicine/organization & administration , Adult , Contraceptive Agents , Counseling/organization & administration , Female , Humans , Kenya , Middle Aged , Sex Education/organization & administration , Young Adult
12.
Epilepsy Behav ; 88: 218-226, 2018 11.
Article in English | MEDLINE | ID: mdl-30300871

ABSTRACT

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.


Subject(s)
Epilepsy/therapy , Multilingualism , Self-Management/methods , Therapy, Computer-Assisted/methods , Adult , Arizona/epidemiology , Epilepsy/epidemiology , Epilepsy/psychology , Feasibility Studies , Female , Health Personnel/psychology , Hispanic or Latino/psychology , Humans , Male , Middle Aged , Reproducibility of Results , Self-Management/psychology , Texas/epidemiology , Therapy, Computer-Assisted/standards
13.
Epilepsy Behav ; 85: 243-247, 2018 08.
Article in English | MEDLINE | ID: mdl-29853255

ABSTRACT

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.


Subject(s)
Centers for Disease Control and Prevention, U.S. , Community Networks , Epilepsy/psychology , Epilepsy/therapy , Self-Management/methods , Adult , Centers for Disease Control and Prevention, U.S./trends , Common Data Elements , Community Networks/trends , Cross-Sectional Studies , Databases, Factual/trends , Depression/epidemiology , Depression/psychology , Depression/therapy , Epilepsy/epidemiology , Female , Humans , Male , Middle Aged , Quality of Life/psychology , United States/epidemiology
14.
Epilepsia ; 59(5): 905-914, 2018 05.
Article in English | MEDLINE | ID: mdl-29637551

ABSTRACT

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.


Subject(s)
Epilepsy/prevention & control , Primary Prevention/methods , Birth Injuries/complications , Birth Injuries/prevention & control , Brain Injuries, Traumatic/complications , Brain Injuries, Traumatic/prevention & control , Central Nervous System Infections/complications , Central Nervous System Infections/prevention & control , Epilepsy/etiology , Humans , Stroke/complications , Stroke/prevention & control
15.
J Clin Neurol ; 14(2): 206-211, 2018 Apr.
Article in English | MEDLINE | ID: mdl-29504297

ABSTRACT

BACKGROUND AND PURPOSE: Epilepsy is a chronic neurological disease that represents a tremendous burden on both patients and society in general. Studies have addressed how demographic variables, socioeconomic variables, and psychological comorbidity are related to the quality of life (QOL) of people with epilepsy (PWE). However, there has been less focus on how these factors may differ between patients who exhibit varying degrees of seizure control. This study utilized data from the Managing Epilepsy Well (MEW) Network of the Centers for Disease Control and Prevention with the aim of elucidating differences in demographic variables, depression, and QOL between adult PWE. METHODS: Demographic variables, depression, and QOL were compared between PWE who experience clinically relevant differences in seizure occurrence. RESULTS: Gender, ethnicity, race, education, income, and relationship status did not differ significantly between the seizure-frequency categories (p>0.05). People with worse seizure control were significantly younger (p=0.039), more depressed (as assessed using the Patient Health Questionnaire) (p=0.036), and had lower QOL (as determined using the 10-item Quality of Life in Epilepsy for Adults scale) (p<0.001). CONCLUSIONS: The present results underscore the importance of early screening, detection, and treatment of depression, since these factors relate to both seizure occurrence and QOL in PWE.

16.
BMC Neurol ; 18(1): 31, 2018 Mar 21.
Article in English | MEDLINE | ID: mdl-29562884

ABSTRACT

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.


Subject(s)
Cerebral Hemorrhage/economics , Cerebral Hemorrhage/therapy , Hospitals/statistics & numerical data , Patient Outcome Assessment , Aged , Cost-Benefit Analysis , Female , Humans , Male , Middle Aged , Prospective Studies , Quality of Life , Texas
17.
PLoS One ; 13(2): e0191658, 2018.
Article in English | MEDLINE | ID: mdl-29462166

ABSTRACT

BACKGROUND: Although cancer patients (CPs) are increasingly likely to visit emergency department (ED), no population-based study has compared the characteristics of CPs and non-cancer patients (NCPs) who visit the ED and examined factors associated with hospitalization via the ED. In this study, we (1) compared characteristics and diagnoses between CPs and NCPs who visited the ED in a cancer center or general hospital; (2) compared characteristics and diagnoses between CPs and NCPs who were hospitalized via the ED in a cancer center or general hospital; and (3) investigated important factors associated with such hospitalization. METHODS AND FINDINGS: We analyzed patient characteristic and diagnosis [based on International Classification of Diseases-9 (ICD-9) codes] data from the ED of a comprehensive cancer center (MDACC), 24 general EDs in Harris County, Texas (HCED), and the National Hospital Ambulatory Medical Care Survey (NHAMCS) from 1/1/2007-12/31/2009. Approximately 3.4 million ED visits were analyzed: 47,245, 3,248,973, and 104,566 visits for MDACC, HCED, and NHAMCS, respectively, of which 44,143 (93.4%), 44,583 (1.4%), and 632 (0.6%) were CP visits. CPs were older than NCPs and stayed longer in EDs. Lung, gastrointestinal (excluding colorectal), and genitourinary (excluding prostate) cancers were the three most common diagnoses related to ED visits at general EDs. CPs visiting MDACC were more likely than CPs visiting HCED to be privately insured. CPs were more likely than NCPs to be hospitalized. Pneumonia and influenza, fluid and electrolyte disorders, and fever were important predictive factors for CP hospitalization; coronary artery disease, cerebrovascular disease, and heart failure were important factors for NCP hospitalization. CONCLUSIONS: CPs consumed more ED resources than NCPs and had a higher hospitalization rate. Given the differences in characteristics and diagnoses between CPs and NCPs, ED physicians must pay special attention to CPs and be familiar with their unique set of oncologic emergencies.


Subject(s)
Cancer Care Facilities/organization & administration , Emergency Service, Hospital/organization & administration , Neoplasms/therapy , Adult , Aged , Female , Humans , Insurance Coverage , Male , Middle Aged , Patient Admission , United States
18.
Telemed J E Health ; 24(11): 908-921, 2018 11.
Article in English | MEDLINE | ID: mdl-29432073

ABSTRACT

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.


Subject(s)
Health Policy , Organisation for Economic Co-Operation and Development , Telemedicine , Africa South of the Sahara , Benchmarking , Developing Countries , International Cooperation , Logistic Models , Surveys and Questionnaires
19.
Front Public Health ; 5: 256, 2017.
Article in English | MEDLINE | ID: mdl-29043247

ABSTRACT

INTRODUCTION: Epilepsy is a neurological disorder involving recurrent seizures. It affects approximately 5 million people in the U.S. To optimize their quality of life people with epilepsy are encouraged to engage in self-management (S-M) behaviors. These include managing their treatment (e.g., adhering to anti-seizure medication and clinical visit schedules), managing their seizures (e.g., responding to seizure episodes), managing their safety (e.g., monitoring and avoiding environmental seizure triggers), and managing their co-morbid conditions (e.g., anxiety, depression). The clinic-based Management Information Decision Support Epilepsy Tool (MINDSET) is a decision-support system founded on theory and empirical evidence. It is designed to increase awareness by adult patients (≥18 years) and their health-care provider regarding the patient's epilepsy S-M behaviors, facilitate communication during the clinic visit to prioritize S-M goals and strategies commensurate with the patient's needs, and increase the patient's self-efficacy to achieve those goals. METHODS: The purpose of this paper is to describe the application of intervention mapping (IM) to develop, implement, and formatively evaluate the clinic-based MINDSET prototype and in developing implementation and evaluation plans. Deliverables comprised a logic model of the problem (IM Step 1); matrices of program objectives (IM Step 2); a program planning document comprising scope, sequence, theory-based methods, and practical strategies (IM Step 3); a functional MINDSET program prototype (IM Step 4); plans for implementation (IM Step 5); and evaluation (IM Step 6). IM provided a logical and systematic approach to developing and evaluating clinic-based decision support toward epilepsy S-M.

20.
Am J Prev Med ; 52(3 Suppl 3): S241-S245, 2017 Mar.
Article in English | MEDLINE | ID: mdl-28215372

ABSTRACT

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


Subject(s)
Disease Management , Epilepsy , Self-Management , Evidence-Based Practice , Humans , Preventive Medicine/organization & administration
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