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Margolis SA, Prieto S, Goldstein A, Kaden S, Castillo E, Sadhu S, Solanki D, Larracey ET, Tremont G, Mankodiya K, Kiriakopoulos ET. Feasibility and acceptability of an online epilepsy stigma self-management program. Epilepsy Behav 2025; 165:110331. [PMID: 40020595 DOI: 10.1016/j.yebeh.2025.110331] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/01/2024] [Revised: 02/11/2025] [Accepted: 02/18/2025] [Indexed: 03/03/2025]
Abstract
INTRODUCTION Stigma is a prevalent source of distress in people with epilepsy. We developed a self-paced online stigma self-management program for adults with epilepsy (Reducing Internalized Stigma in Epilepsy: A Behavioral Online Video Education, RISE ABOVETM). MATERIALS AND METHODS Twenty socio-demographically diverse participants completed RISE ABOVE over an average of 3.5 weeks. Acceptability was determined by whether ≥ 80 % responded favorably to the Credibility and Expectancy Questionnaire and tailored surveys. Treatment Satisfaction was determined by whether mean Client Satisfaction Questionnaire responses was ≥ 80 %. Epilepsy Stigma, Perceived Stress, Perceived Rejection, Loneliness, Self-Efficacy, and Satisfaction with Social Roles and Activities were rated pre-post-intervention. Paired sample t-tests and Hedges' g effect sizes gauged improvements. RESULTS Most participants (≥ 80 %) thought the intervention was logical and content was easy to understand/navigate, interesting/helpful, and planned on using learned skills. Mean satisfaction was 85.41 % ± 14.43 %. There were large improvements in Epilepsy Stigma (p < 0.001; Hedge's g = 1.052), Perceived Stress (p < 0.001; Hedge's g = 0.887) and Satisfaction with Social Roles and Activities (p < 0.001; Hedge's g = -1.010), and medium improvements in Perceived Rejection (p = 0.004; Hedge's g = 0.634) and Self-Efficacy (p = 0.008; Hedge's g = -0.568). No significant differences were observed 6-months post-program completion, despite some attenuation. CONCLUSIONS RISE ABOVE is a feasible and acceptable anti-stigma intervention. Markers of acceptability were evident in high rates of credibility and satisfaction. Sizable improvements in stigma and other psychosocial outcomes were seen. Future studies will establish RISE ABOVE's efficacy via a randomized controlled trial.
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Affiliation(s)
- Seth A Margolis
- Brown University Health, Department of Psychiatry, Providence, RI 02903, USA; Warren Alpert Medical School of Brown University, Department of Psychiatry and Human Behavior, Providence, RI, USA.
| | - Sarah Prieto
- Warren Alpert Medical School of Brown University, Department of Psychiatry and Human Behavior, Providence, RI, USA; Memory and Aging Program, Butler Hospital, Providence, RI, USA
| | - Allyson Goldstein
- Brown University Health, Department of Psychiatry, Providence, RI 02903, USA; University of Maine, Psychology Department, Orono, ME, USA
| | - Sarah Kaden
- Dartmouth-Hitchcock Medical Center, Department of Neurology, Lebanon, NH, USA
| | - Elijah Castillo
- University of Rhode Island, Department of Electrical, Computer, and Biomedical Engineering, Kingston, RI, USA
| | - Shehjar Sadhu
- University of Rhode Island, Department of Electrical, Computer, and Biomedical Engineering, Kingston, RI, USA
| | - Dhaval Solanki
- University of Rhode Island, Department of Electrical, Computer, and Biomedical Engineering, Kingston, RI, USA
| | | | - Geoffrey Tremont
- Warren Alpert Medical School of Brown University, Department of Psychiatry and Human Behavior, Providence, RI, USA
| | - Kunal Mankodiya
- University of Rhode Island, Department of Electrical, Computer, and Biomedical Engineering, Kingston, RI, USA
| | - Elaine T Kiriakopoulos
- Dartmouth-Hitchcock Medical Center, Department of Neurology, Lebanon, NH, USA; Geisel School of Medicine, Hanover, NH, USA
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Li C, Chen J, Tan J, Xiao Y, Deng R, Huang H. Effects of the transtheoretical model-based self-management program on behavioral change in persons with epilepsy: Study protocol for a randomized controlled trial. PLoS One 2024; 19:e0305547. [PMID: 39585910 PMCID: PMC11588227 DOI: 10.1371/journal.pone.0305547] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/07/2023] [Accepted: 05/19/2024] [Indexed: 11/27/2024] Open
Abstract
INTRODUCTION Self-management applications are cost-effective and scalable for epilepsy treatment. However, there is a limited long-term quantitative evidence regarding their effectiveness. The Transtheoretical Model (TTM) offers a psychological framework that tailors self-management plans to the individual's stage of behavioral change. This approach aims to address utilization needs, reduce information overload, minimize the adverse effects of self-management, and enhance the overall effectiveness of interventions for individuals with epilepsy. METHODS AND ANALYSIS This will be a randomized, double-blind, the clinical trial involving two groups of adults diagnosed with epilepsy. In addition to treatment as usual (TAU), the intervention group will receive an intervention program constructed from TTM combined with self-management as part of the treatment plan. The control group will receive TAU only. Prior to the intervention, the participants will undergo an initial assessment to determine their current stage of behavioral change to facilitate the implementation of targeted behavior support strategies. Additionally, participants will receive weekly 30-minute educational videos on epilepsy. The goal is to enroll 160 adults who have been diagnosed with epilepsy for at least six months and are receiving medication. Data collection will encompass an assessment of C-ESMS, HADS, QOLIE-31, and LSSS. These parameters will be evaluated at baseline, as well as during follow-up periods at 1, 3, and 6 months post-intervention. DISCUSSION Existing self-management interventions for people with epilepsy primarily focus on knowledge and psychological factors. Discrepancies in research design, intervention plans, and patient characteristics have contributed to inconsistent outcomes in previous studies. This study seeks to advance the field by integrating the TTM with empirically supported self-management practices. The delineation of behavioral change stages within the TTM framework is expected to form a structured intervention protocol. This study will inform standardized, evidence-based epilepsy care practices.
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Affiliation(s)
- Cai Li
- Department of Neurology, Affiliated Hospital of Zunyi Medical University, Zunyi, Guizhou Province, China
- Nursing College of Zunyi Medical University, Zunyi City, Guizhou Province, China
| | - Junting Chen
- Department of Neurology, Affiliated Hospital of Zunyi Medical University, Zunyi, Guizhou Province, China
- Nursing College of Zunyi Medical University, Zunyi City, Guizhou Province, China
| | - Jin Tan
- Department of Neurology, Affiliated Hospital of Zunyi Medical University, Zunyi, Guizhou Province, China
- Nursing College of Zunyi Medical University, Zunyi City, Guizhou Province, China
| | - Ye Xiao
- Good Clinical Practice Center, Affiliated Hospital of Zunyi Medical University, Zunyi City, Guizhou Province, China
| | - Renli Deng
- Nursing College of Zunyi Medical University, Zunyi City, Guizhou Province, China
| | - Hao Huang
- Department of Neurology, Affiliated Hospital of Zunyi Medical University, Zunyi, Guizhou Province, China
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Mbalinda SN, Kaddumukasa M, Najjuma JN, Birungi DR, Kaddumukasa MN, Levin JB, Still CH, Burant CJ, Modi AC, Katabira ET, Sajatovic M. Self-Management Intervention for Reducing Epilepsy Burden Among Adult Ugandans with Epilepsy (SMART-U): Randomised Clinical Trial Protocol. Neuropsychiatr Dis Treat 2024; 20:2277-2286. [PMID: 39619495 PMCID: PMC11606334 DOI: 10.2147/ndt.s490050] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/10/2024] [Accepted: 11/19/2024] [Indexed: 12/11/2024] Open
Abstract
Background People of all ages are affected by epilepsy, a prevalent chronic brain illness that is primarily found in underdeveloped nations. It is very necessary to implement epilepsy self-management techniques to support individuals with epilepsy in order to impact outcomes related to epilepsy. The purpose of this 2-site randomised controlled experiment is to investigate this further, based on encouraging preliminary evidence. Methods A total of 188 adult people with epilepsy (PWE) attending the neurology clinics at Mulago and Mbarara hospitals and consent to participate in the study will be recruited. They will be randomised into intervention versus enhanced treatment control (eTAU) study groups. The intervention group will receive 12-week "intensive" educational sessions and a 12-week remotely accessed telephone follow-up stage. The controls will continue in their usual care supplemented by written materials on epilepsy in their preferred language and tailored to the reading level of most patients at the clinic. SMART-U consists of 2 main components: a 12-week "intensive" group format stage and a 12-week remotely accessed telephone follow-up stage. SMART-U will be assessed for acceptability, fidelity, and efficacy compared to eTAU. The primary study outcome is the mean change in cumulative past 24-week seizure frequency (24 weeks prior to the study baseline compared to the 24-week follow-up). Seizure frequency will be via self-report with corroboration by family/support system informants whenever possible. Participants will self-report the seizure frequency (numeric count) that they experienced between baseline and 13 weeks and again between 13 and 24 weeks, and the mean change from baseline to 24 weeks in QOL. Discussion The curriculum-guided Self-Management intervention for Reducing The epilepsy burden among Ugandans (SMART-U) program is anticipated to reduce the epilepsy burden seizure frequency and improve other health outcomes, including depression, functional status and health resource use. Trial Registration Number TRN NCT06139198. Date of registration November142023.
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Affiliation(s)
| | - Mark Kaddumukasa
- Department of Medicine, School of Medicine, College of Health Sciences, Makerere University, Kampala, Uganda
| | | | - Doreen R Birungi
- Department of Medicine, School of Medicine, College of Health Sciences, Makerere University, Kampala, Uganda
| | - Martin Ntambi Kaddumukasa
- Department of Nursing, College of Health Sciences, Makerere University, Kampala, Uganda
- Department of Medicine, Mulago Hospital, Kampala, Uganda
| | - Jennifer B Levin
- Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center & Case Western Reserve University School of Medicine, Cleveland, OH, 44106, USA
| | - Carolyn Harmon Still
- Louis Stokes VA Medical Center, Geriatric Research Education, and Clinical Center, Cleveland, OH, 44106, USA
| | - Christopher J Burant
- Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, OH, 44106, USA
| | - Avani C Modi
- Cincinnati Children, S Hospital Medical Center, Cincinnati, Ohio, USA
| | - Elly T Katabira
- Department of Medicine, School of Medicine, College of Health Sciences, Makerere University, Kampala, Uganda
| | - Martha Sajatovic
- Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center & Case Western Reserve University School of Medicine, Cleveland, OH, 44106, USA
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Sajatovic M, Ghearing GR, Tyrrell M, Black J, Krehel-Montgomery J, McDermott G, Yala J, Barigye R, Adeniyi C, Briggs F. Clinical correlates of perceived stigma among people living with epilepsy enrolled in a self-management clinical trial. Epilepsy Behav 2024; 160:110025. [PMID: 39288652 DOI: 10.1016/j.yebeh.2024.110025] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/02/2024] [Revised: 08/16/2024] [Accepted: 08/21/2024] [Indexed: 09/19/2024]
Abstract
BACKGROUND AND PURPOSE Stigma is a pervasive barrier for people living with epilepsy (PLWE) and can have substantial negative effects. This study evaluated clinical correlates of perceived stigma in a research sample of PLWE considered to be at high risk due to frequent seizures or other negative health events. METHODS Analyses were derived from baseline data from an ongoing Centers for Disease Control and Prevention (CDC)-funded randomized controlled trial (RCT) testing an epilepsy self-management approach. Standardized measures assessed socio-demographics, perceived epilepsy stigma, epilepsy-related self-efficacy, epilepsy self-management competency, health literacy, depressive symptom severity, functional status, social support and epilepsy-related quality of life. RESULTS There were 160 individuals, mean age of 39.4, (Standard deviation/SD=12.2) enrolled in the RCT, 107 (66.9 %) women, with a mean age of epilepsy onset of 23.9 (SD 14.0) years. The mean seizure frequency in the prior 30 days was 6.4 (SD 21.2). Individual factors correlated with worse perceived stigma were not being married or cohabiting with someone (p = 0.016), lower social support (p < 0.0001), lower self-efficacy (p < 0.0001), and lower functional status for both physical health (p = 0.018) and mental health (p < 0.0001). Perceived stigma was associated with worse depressive symptom severity (p < 0.0001). Multivariable linear regression found significant independent associations between stigma and lower self-efficacy (β -0.05; p = 0.0096), lower social support (β -0.27; p = 2.4x10-5, and greater depression severity (β 0.6; p = 5.8x10-5). CONCLUSIONS Perceived epilepsy stigma was positively correlated with depression severity and negatively correlated with social support and self-efficacy. Providers caring for PLWE may help reduce epilepsy stigma by screening for and treating depression, encouraging supportive social relationships, and providing epilepsy self-management support. Awareness of epilepsy stigma and associated factors may help reduce some of the hidden burden borne by PLWE.
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Affiliation(s)
- Martha Sajatovic
- Department of Psychiatry and of Neurology, Neurological & Behavioral Outcomes Center, Case Western Reserve University School of Medicine and University Hospitals Case Medical Center, Cleveland, OH, USA.
| | - Gena R Ghearing
- Department of Neurology, Carver College of Medicine and Iowa Health Care, Iowa City, IA, USA
| | - Maegan Tyrrell
- Department of Neurology, Carver College of Medicine and Iowa Health Care, Iowa City, IA, USA
| | - Jessica Black
- Department of Psychiatry and of Neurology, Neurological & Behavioral Outcomes Center, Case Western Reserve University School of Medicine and University Hospitals Case Medical Center, Cleveland, OH, USA
| | - Jacqueline Krehel-Montgomery
- Neurological & Behavioral Outcomes Center, Case Western Reserve University School of Medicine and University Hospitals Case Medical Center, Cleveland, OH, USA
| | - Grace McDermott
- Case Western Reserve University School of Medicine, Cleveland, OH, USA
| | - Joy Yala
- Neurological & Behavioral Outcomes Center, Case Western Reserve University School of Medicine and University Hospitals Case Medical Center, Cleveland, OH, USA
| | - Richard Barigye
- Neurological & Behavioral Outcomes Center, Case Western Reserve University School of Medicine and University Hospitals Case Medical Center, Cleveland, OH, USA
| | - Clara Adeniyi
- Neurological & Behavioral Outcomes Center, Case Western Reserve University School of Medicine and University Hospitals Case Medical Center, Cleveland, OH, USA
| | - Farren Briggs
- Department of Public Health Sciences, University of Miami Miller School of Medicine, Miami, FL, USA
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Sajatovic M, Beem Jelley P, Schrag K, Varanese P, Needham K, Black J, Adeniyi C, Barigye R, Yala J, Ghearing GR, Glasgow RE, Briggs F. A case study in science-to-service application of epilepsy self-management. Epilepsy Behav 2024; 159:109945. [PMID: 39121751 DOI: 10.1016/j.yebeh.2024.109945] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/10/2024] [Revised: 06/12/2024] [Accepted: 07/07/2024] [Indexed: 08/12/2024]
Abstract
AIMS Epilepsy self-management (ESM), the overall approach of reducing seizures and optimizing whole-health, is a targeted approach to improve population health for people with epilepsy (PWE). "Self-management for people with epilepsy and a history of negative health events" (SMART) is an 8-session group-format, remotely delivered ESM. This report describes the evolution of SMART development, testing and scale-up, taking advantage of ESM team expertise, community relationships and infrastructure established by social service agencies that deliver support to PWE. METHODS This is a case-study dissemination and implementation (D&I) science-to-service model using the RE-AIM framework approach (Reach, Effectiveness, Adoption, Implementation, and Maintenance) focused on 5 dimensions of individual- and setting-level outcomes important to program adoption, impact and sustainability. Performance evaluations include participation representativeness, ESM attendance and acceptability as well as change in relevant health outcomes. RESULTS SMART D & I is implemented via a collaboration of 3 unique regional, epilepsy-focused nonprofit social service organizations and a university team that developed SMART. The ongoing collaboration is expanding SMART delivery to PWE across 13 U.S. states. Thus far, we have trained 17 Nurse and Peer Educators (NEs and PEs). PEs (N = 10) have a mean age 51.1 (SD 10.4) years and a mean age of epilepsy diagnosis of 29.4 (SD 19.3). Of 128 participants offered SMART, and who provided age data (N = 86) mean age was 37.7 years (SD 14.4). Of participants who provided data on gender and race (N = 89), 65 were women (73.9 %), 18 African-American (20.2 %). Mean age of epilepsy diagnosis was 19.4 years (SD 16.6) and 59 (52.2 %) of PWE reported having seizures in the last 30 days pre-SMART sessions. Among those with attendance data (N = 103), mean number of SMART groups attended was 5.7 (SD 2.3). Mean values for past 30-day seizure frequency, 9-item Patient Health Questionnaire (PHQ-9), Generalized Anxiety Disorder Inventory (GAD-7) and 10-item Quality of Life in Epilepsy Scale (QOLIE-10) for PWE that provided both pre and post SMART data were 7.6 (SD 15.8) vs 2.8 (SD 3.4) p = 0.3, 7.63 (SD 6.6) vs 6.3 (SD 5.7) p = 0.95, 6.6 (SD 5.7) vs 6.67(SD 5.3) p = 0.47 and 2.8 (SD 0.8) vs 2.7 (SD 1.0) p = 0.07 respectively. CONCLUSIONS Implementing ESM using a RE-AIM/Iterative RE-AIM framework links intervention developers and community partners. While PWE have substantial barriers to health, including frequent seizures, they are able engage in the SMART program. Although a major limitation to patient-level evaluation is challenges in collecting post-SMART follow-up data, preliminary findings suggest a trend for improved quality of life.
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Affiliation(s)
- Martha Sajatovic
- Department of Psychiatry and of Neurology, Case Western Reserve University School of Medicine, Cleveland, OH, USA.
| | - Peggy Beem Jelley
- Epilepsy Association of Western and Central Pennsylvania, Pittsburgh, PA, USA
| | | | | | | | - Jessica Black
- Department of Psychiatry, Case Western Reserve University School of Medicine, Cleveland, OH, USA
| | - Clara Adeniyi
- Department of Psychiatry, Case Western Reserve University School of Medicine, Cleveland, OH, USA
| | - Richard Barigye
- Department of Psychiatry, Case Western Reserve University School of Medicine, Cleveland, OH, USA
| | - Joy Yala
- Department of Psychiatry, Case Western Reserve University School of Medicine, Cleveland, OH, USA
| | | | | | - Farren Briggs
- Department of Public Health Sciences, Division of Epidemiology, Miller School of Medicine, University of Miami, Miami, FLA, USA
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Rogač Ž, Nikolić D, Dimitrijević A, Andrić I, Milošević G, Stevanović D. Strong and weak points in the quality of life of school-age children with newly diagnosed uncomplicated epilepsy over the first six months: golden hours for prevention. Croat Med J 2024; 65:349-355. [PMID: 39219198 PMCID: PMC11399723] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 09/04/2024] Open
Abstract
AIM To determine changes in the quality of life associated with epilepsy in school-age children with newly diagnosed uncomplicated epilepsy over the first six months after diagnosis to find points relevant for the early prevention of deterioration in quality of life. METHODS This prospective follow-up study, performed in University Children's Hospital in Belgrade, enrolled 60 school-aged children with recently diagnosed epilepsy, along with their parents. The respondents completed the Children with Epilepsy Quality of Life immediately following the diagnosis of epilepsy and six months later. RESULTS Significant decline was observed in the domains related to intrapersonal/emotional relationships by both children (P<0.001) and their parents (P=0.03), and in the need to keep epilepsy a secret as observed by parents (P = 0.04). Significant improvement was found in the Interpersonal/Social domain as rated by parents (P=0.001). Total quality-of-life scores, as assessed by children and parents, did not change significantly. CONCLUSION Bearing in mind that stigma and intrapersonal struggles are the major factors affecting the quality of life in children with epilepsy, psychological and social support is highly recommended in the first six months following an epilepsy diagnosis. Since intrapersonal relationships improved over six months, compensating for other deteriorations in the quality of life, children with epilepsy should be encouraged to socialize with their peers and to join organizations and actions that encourage social contact.
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Affiliation(s)
- Željka Rogač
- Željka Rogač, Clinical Centre of Montenegro - Institute for Children's Diseases, Moskovska 111, 81000 Podgorica, Montenegro,
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Ettienne EB, Russo E, Striano P, Grant-Kels JM, Rose K. Did pediatric drug development advance epilepsy treatment in young patients? It is time for new research goals. World J Methodol 2024; 14:92371. [PMID: 38983658 PMCID: PMC11229878 DOI: 10.5662/wjm.v14.i2.92371] [Citation(s) in RCA: 2] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/23/2024] [Revised: 02/13/2024] [Accepted: 04/16/2024] [Indexed: 06/13/2024] Open
Abstract
Modern drugs have changed epilepsy, which affects people of all ages. However, for young people with epilepsy, the framework of drug development has stalled. In the wake of the thalidomide catastrophe, the misconception emerged that for people < 18 years of age drugs, including antiseizure medications (ASMs), need separate proof of efficacy and safety, overall called "pediatric drug development". For ASMs, this has changed to some degree. Authorities now accept that ASMs are effective in < 18 years as well, but they still require "extrapolation of efficacy," as if minors were another species. As a result, some of the pediatric clinical epilepsy research over the past decades was unnecessary. Even more importantly, this has hampered research on meaningful research goals. We do not need to confirm that ASMs work before as they do after the 18th birthday. Instead, we need to learn how to prevent brain damage in young patients by preventing seizures and optimize ASMs' uses. Herein we discuss how to proceed in this endeavor.
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Affiliation(s)
- Earl B Ettienne
- College of Pharmacy, Howard University College of Pharmacy, Washington, DC 20059, United States
| | - Emilio Russo
- Department of Health Sciences, School of Medicine, Russo, University "Magna Graecia" of Catanzaro, Catanzaro 88100, Italy
| | | | - Jane M Grant-Kels
- Department of Dermatology, University of Connecticut Health Center, Farmington, CT 06032, United States
| | - Klaus Rose
- klausrose Consulting, Pediatric Drug Development and more, Medical Science, CH-4125 Riehen, Switzerland
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Goh SL, Harding KE, Lewis AK, Taylor NF, Carney PW. Self-management strategies for people with epilepsy: An overview of reviews. Epilepsy Behav 2024; 150:109569. [PMID: 38071829 DOI: 10.1016/j.yebeh.2023.109569] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/07/2023] [Revised: 11/26/2023] [Accepted: 11/28/2023] [Indexed: 01/14/2024]
Abstract
OBJECTIVE This overview of systematic reviews aimed to appraise evidence regarding self-management strategies on health-related quality of life, self-efficacy, medication compliance, seizure status and psychosocial outcomes compared to usual care for people with epilepsy. METHODS Databases were searched until September 2022 using MeSH terms included OVID Medline, Embase and Cochrane. Following application of eligibility criteria, data were extracted and quality of articles was assessed using the AMSTAR2 checklist. A narrative synthesis of evidence included certainty of evidence evaluated using a Grading of Recommendations, Assessment, Development and Evaluation approach. RESULTS The 12 selected reviews contained three meta-analyses and 91 unique primary studies. One review considered only epilepsy with intellectual disability and three considered paediatrics. Interventions included technologically-based interventions, small group discussion, or counselling and educational programs. There was high certainty evidence to suggest self-management is associated with improvement in health-related quality of life and moderate certainty evidence to suggest improvement in depression symptoms. There was low certainty evidence to suggest a modest reduction in negative health events and a minimal increase in the satisfaction with life. There was no evidence of benefit favouring self-management on measures of adherence epilepsy self-management, perception of self-efficacy, medication adherence or seizure status. SIGNIFICANCE Despite high certainty evidence to suggest that self-management strategies for people with epilepsy improve health-related quality of life, benefits have not been demonstrated for outcomes that would be expected to be associated with these improvements, such as seizure status. These results provide support for self-management strategies to supplement usual care for people with epilepsy.
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Affiliation(s)
- Sarah L Goh
- Monash Health, Clayton, VIC 3168, Australia; Eastern Health Clinical School, Monash University, Box Hill, VIC 3128, Australia
| | - Katherine E Harding
- Allied Health Clinical Research Office, Eastern Health, 5 Arnold Street, Box Hill, VIC 3128, Australia; La Trobe University, Kingsbury Drive, Bundoora, VIC 3086, Australia
| | - Annie K Lewis
- Allied Health Clinical Research Office, Eastern Health, 5 Arnold Street, Box Hill, VIC 3128, Australia; La Trobe University, Kingsbury Drive, Bundoora, VIC 3086, Australia
| | - Nicholas F Taylor
- Allied Health Clinical Research Office, Eastern Health, 5 Arnold Street, Box Hill, VIC 3128, Australia; La Trobe University, Kingsbury Drive, Bundoora, VIC 3086, Australia
| | - Patrick W Carney
- Eastern Health Clinical School, Monash University, Box Hill, VIC 3128, Australia; Department of Neurosciences, Eastern Health, 5 Arnold St, Box Hill, VIC 3128, Australia; The Florey Institute for Neuroscience and Mental Health, Melbourne Brain Centre, Burgundy Street, Heidelberg, VIC 3084, Australia.
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Karakis I, Boualam N, Moura LM, Howard DH. Quality of life and functional limitations in persons with epilepsy. Epilepsy Res 2023; 190:107084. [PMID: 36657252 DOI: 10.1016/j.eplepsyres.2023.107084] [Citation(s) in RCA: 8] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/06/2022] [Revised: 12/22/2022] [Accepted: 01/09/2023] [Indexed: 01/15/2023]
Abstract
OBJECTIVE Epilepsy can reduce quality of life (QOL), functionality, and social participation, but these effects have not been adequately quantified in large, population-based, controlled studies. We sought to evaluate the impact of epilepsy on patients' QOL and employment outcomes. METHODS In this cross-sectional study we used nationally representative, pooled data from the Medical Expenditure Panel Survey (MEPS) household component files for 2010-2018. MEPS is a population-based survey of U.S. community-dwelling persons. We included respondents with condition file records for epilepsy. We also analyzed respondents with records for seizure. The primary outcomes were short form-12 physical and mental health scores. Secondary outcomes included self-rated health status, employment status, educational attainment, school/household/work limitations, and missed workdays. We compared these outcomes between persons with epilepsy (PWE) and age- and gender-matched controls. RESULTS We identified 1078 people with epilepsy, 2344 seizure cases, and 3422 cases of either condition (persons with epilepsy and/or seizures). Epilepsy was associated with a decrease of - 4.0 (95% CI: -5.1 to -2.8) points in SF-12 physical health scores and - 3.1 (95% CI: -4.2 to -1.9) in SF-12 mental health scores. Epilepsy was also associated with decreases in the likelihood of reporting good/very good/excellent health status (-13.3 [95% CI: -16.1 to -10.4] percentage points). Epilepsy was also associated with adverse employment-related outcomes. Specifically, PWE were 17.9 (95% CI: 14.3-21.4) percentage points more likely to report that they had work or household limitations. The associations between outcomes and epilepsy were, in most cases, larger than those between outcomes and other common, chronic conditions. SIGNIFICANCE Epilepsy is associated with worse quality of life and employment-related outcomes. Interventions should aim to improve functioning and patients' ability to maintain employment.
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Affiliation(s)
- Ioannis Karakis
- Department of Neurology, Emory University School of Medicine, Atlanta, Georgia.
| | - Nada Boualam
- Department of Health Policy, Emory University School of Medicine, Atlanta, Georgia
| | - Lidia Mvr Moura
- Department of Neurology, Massachusetts General Hospital, Boston, Massachusetts. Department of Neurology, Harvard Medical School, Boston, MA, USA
| | - David H Howard
- Department of Health Policy, Emory University School of Medicine, Atlanta, Georgia
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McGee RE, Patel A, Drzymalla EM, Anderson M, Johnson EK, Thompson NJ, Escoffery C. Project UPLIFT: Adoption and implementation experiences of an epilepsy self-management program. Epilepsy Behav 2023; 138:109001. [PMID: 36495799 DOI: 10.1016/j.yebeh.2022.109001] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/13/2022] [Revised: 11/06/2022] [Accepted: 11/13/2022] [Indexed: 12/12/2022]
Abstract
RATIONALE Project UPLIFT is an evidence-based epilepsy self-management program shown to prevent and treat depression through an 8-session, group telehealth intervention. Since 2012, the program has been disseminated by training community-based providers to deliver UPLIFT to people with epilepsy (PWE). Limited research has described the adoption, implementation, and practice-based maintenance of self-management programs like UPLIFT. We sought to gain a better understanding of this process from trained program adopters. METHODS A cross-sectional evaluation of adoption and implementation experiences was conducted. An online survey with closed- and open-ended questions was distributed to 120 UPLIFT program adopters to collect information about reasons for being trained and experiences implementing the program. Survey items were developed based on the RE-AIM model to assess program reach, effectiveness, adoption, implementation, and maintenance. For closed-ended responses, frequencies and cross-tabs were calculated. Open-ended responses were reviewed and grouped by theme. RESULTS 41 respondents completed the survey (34% response rate). Respondents were from a variety of organizations including clinical (39%, n = 16), educational/research (17%, n = 7), and Epilepsy Foundation affiliates/chapters (12%, n = 5), among others. The most frequently endorsed reason for training in UPLIFT was an interest in supporting PWE (73%, n = 30). Most respondents rated delivering UPLIFT as very important (49%, n = 20) or important (32%, n = 13) to the organization. Sixty-one percent (n = 25) of respondents reported implementing (implementors) UPLIFT. Of those who had not yet implemented UPLIFT, 50% (n = 8) planned on implementing it at some point. Among program implementors, the most frequently reported implementation facilitators included participant interest (68%, n = 17), training (68%, n = 17), and organizational support (64%, n = 16). Program implementors indicated having program champions (80%, n = 20). The most frequently reported implementation challenge reported was recruitment (72%, n = 18). In open-ended responses, funding was a key theme that would facilitate continued implementation, but 48% (n = 12) responded that did not have access to resources and/or funding to help continue offering UPLIFT. Developing partnerships was recommended to improve the reach and maintenance of the program. Despite challenges, implementors agreed (44%, n = 11) or strongly agreed (36%, n = 9) that UPLIFT was effective in addressing mental health problems among program participants, and 76% (n = 19) plan on continuing to offer UPLIFT. CONCLUSION Implementation surveys increase understanding of program adoption and impact for dissemination trainees. Implementation benefits from program champions, strong partnerships, and sustained funding. Continued refinement of implementation support, such as developing a sustained referral system, maintaining relationships with trainees, supporting evaluation activities, and exploring opportunities for program updates to further enhance adoption, implementation, and maintenance.
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Affiliation(s)
- Robin E McGee
- Department of Behavioral, Social, and Health Education Sciences, Rollins School of Public Health, Emory University, 1518 Clifton Road, Atlanta, GA 30322, United States.
| | - Archna Patel
- Department of Behavioral, Social, and Health Education Sciences, Rollins School of Public Health, Emory University, 1518 Clifton Road, Atlanta, GA 30322, United States
| | - Emily M Drzymalla
- Department of Behavioral, Social, and Health Education Sciences, Rollins School of Public Health, Emory University, 1518 Clifton Road, Atlanta, GA 30322, United States
| | - Molly Anderson
- Department of Behavioral, Social, and Health Education Sciences, Rollins School of Public Health, Emory University, 1518 Clifton Road, Atlanta, GA 30322, United States
| | - Erica K Johnson
- Department of Rehabilitation Medicine/Epilepsy Center, University of Washington, 325 9th Avenue, Seattle, WA 98104, United States.
| | - Nancy J Thompson
- Department of Behavioral, Social, and Health Education Sciences, Rollins School of Public Health, Emory University, 1518 Clifton Road, Atlanta, GA 30322, United States
| | - Cam Escoffery
- Department of Behavioral, Social, and Health Education Sciences, Rollins School of Public Health, Emory University, 1518 Clifton Road, Atlanta, GA 30322, United States
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Premature discontinuation among individuals with epilepsy participating in epilepsy self-management research interventions. Epilepsy Res 2022; 187:107034. [DOI: 10.1016/j.eplepsyres.2022.107034] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/10/2022] [Revised: 09/22/2022] [Accepted: 10/06/2022] [Indexed: 11/22/2022]
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Self-care and Epilepsy. Curr Treat Options Neurol 2022. [DOI: 10.1007/s11940-022-00743-2] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/03/2022]
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Escoffery C, Haardoerfer R, Bamps Y, McGee R, Geiger D, Quarells RC, Thompson NJ, Patel A, Anderson M, LaFrance WC. Reduction of the Adult Epilepsy Self-Management Measure Instrument (AESMMI). Epilepsy Behav 2022; 131:108692. [PMID: 35526460 PMCID: PMC10903544 DOI: 10.1016/j.yebeh.2022.108692] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/20/2021] [Revised: 03/29/2022] [Accepted: 03/30/2022] [Indexed: 11/03/2022]
Abstract
Managing one's own symptoms, medications, treatments, lifestyle, and psychological and social aspects of chronic disease is known as self-management. The Institute of Medicine has identified three categories of epilepsy self-management, including medication management, behavior management, and emotional support. Overall, there has been limited research of interventions measuring epilepsy self-management behaviors. The present study aimed to develop an abbreviated version of the full, previously published, Adult Epilepsy Self-Management Measurement Instrument (AESMMI) using confirmatory factor analysis. Data come from a cross-sectional survey of people with epilepsy. The sample included adults with epilepsy (n = 422), who reported that a clinician diagnosed them with epilepsy or a seizure disorder. We ran confirmatory factor analyses in testing the abbreviated scale. The scale was reduced using a theory-driven data-informed approach. The full AESMMI length was reduced by 40% (from 65 to 38 items) with an overall internal consistency of 0.912. The abbreviated AESMMI retained the 11 subdomains, with Cronbach's alphas from 0.535 to 0.878. This reduced item scale can be useful for assessing self-management behaviors for people with epilepsy or measuring outcomes in self-management research.
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Affiliation(s)
- Cam Escoffery
- Emory University, Rollins School of Public Health, 1518 Clifton Road, Atlanta, GA 30322, United States.
| | - Regine Haardoerfer
- Emory University, Rollins School of Public Health, 1518 Clifton Road, Atlanta, GA 30322, United States
| | - Yvan Bamps
- Emory University, Rollins School of Public Health, 1518 Clifton Road, Atlanta, GA 30322, United States
| | - Robin McGee
- Emory University, Rollins School of Public Health, 1518 Clifton Road, Atlanta, GA 30322, United States
| | - Demetrius Geiger
- Morehouse School of Medicine, 720 Westview Dr. SW, Atlanta, GA 30310, United States
| | - Rakale C Quarells
- Morehouse School of Medicine, 720 Westview Dr. SW, Atlanta, GA 30310, United States
| | - Nancy J Thompson
- Emory University, Rollins School of Public Health, 1518 Clifton Road, Atlanta, GA 30322, United States
| | - Archna Patel
- Emory University, Rollins School of Public Health, 1518 Clifton Road, Atlanta, GA 30322, United States
| | - Molly Anderson
- Boston College, 140 Commonwealth Avenue, Chestnut Hill, MA 02467, United States
| | - W Curt LaFrance
- Brown University, Rhode Island Hospital, 593 Eddy Street, Potter 3, Providence, RI 02903, United States
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Streltzov NA, Schmidt SS, Schommer LM, Zhao W, Tosteson TD, Mazanec MT, Kiriakopoulos ET, Chu F, Henninger HL, Nagle K, Roth RM, Jobst B. Effectiveness of a Self-Management Program to Improve Cognition and Quality of Life in Epilepsy: A Pragmatic, Randomized, Multicenter Trial. Neurology 2022; 98:e2174-e2184. [PMID: 35387855 PMCID: PMC9169940 DOI: 10.1212/wnl.0000000000200346] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/08/2021] [Accepted: 02/21/2022] [Indexed: 11/15/2022] Open
Abstract
BACKGROUND AND OBJECTIVES We conducted a multisite, pragmatic replication trial at 4 New England epilepsy centers to determine the effectiveness of Home-Based Self-Management and Cognitive Training Changes Lives (HOBSCOTCH) in a real-world setting and to assess feasibility of a virtual intervention. METHODS HOBSCOTCH is an 8-session intervention addressing cognitive impairment and quality of life (QoL) for people with epilepsy (PWE). Participants were recruited from epilepsy centers in 4 states and block-randomized into the following groups: in-person HOBSCOTCH (H-IP), virtual HOBSCOTCH (H-V), and waitlist control. Outcome measures were assessed for all groups at baseline, 3 months, and 6 months; intervention groups received long-term follow-up at 9 and 12 months. RESULTS A total of 108 participants were recruited, of whom 85 were included in this analysis (age at baseline 47.5 ± 11.5 years; 68% female). Participants completing the in-person intervention (H-IP) had a 12.4-point improvement in QoL score compared with controls (p < 0.001). Pairwise comparisons found a 6.2-point treatment effect for subjective cognition in the H-IP group (p < 0.001). There were no meaningful group differences in objective cognition or health care utilization at any time points and the treatment effect for QoL diminished by 6 months. The virtual intervention demonstrated feasibility but did not significantly improve outcomes compared with controls. Within-group analysis found improvements in QoL for both H-V and H-IP. DISCUSSION This study replicated the effectiveness of the HOBSCOTCH program in improving QoL for PWE. The study was conducted prior to the COVID-19 pandemic, but the distance-delivered intervention may be particularly well-suited for the current environment. Future research will explore modifications designed to improve the efficacy of H-V and the sustainability of HOBSCOTCH's treatment effect. TRIAL REGISTRATION INFORMATION ClinicalTrials.gov (NCT02394509). CLASSIFICATION OF EVIDENCE This study provides Class III evidence that in-person HOBSCOTCH delivery improved subjective measures of cognition in persons with epilepsy.
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Affiliation(s)
- Nicholas A Streltzov
- From the Departments of Neurology (N.A.S., S.S.S., L.M.S., M.T.M., E.T.K., B.J.) and Psychiatry (R.M.R.), Dartmouth-Hitchcock Medical Center, Lebanon; Geisel School of Medicine (L.M.S., W.Z., T.D.T., E.T.K., R.M.R., B.J.), Dartmouth College, Hanover, NH; Department of Neurology (F.C.), UMass Medical School, Worcester, MA; Department of Neurology (H.L.H.), Maine Medical Center, Scarborough; and Department of Neurology (K.N.), University of Vermont Medical Center, Burlington
| | - Samantha S Schmidt
- From the Departments of Neurology (N.A.S., S.S.S., L.M.S., M.T.M., E.T.K., B.J.) and Psychiatry (R.M.R.), Dartmouth-Hitchcock Medical Center, Lebanon; Geisel School of Medicine (L.M.S., W.Z., T.D.T., E.T.K., R.M.R., B.J.), Dartmouth College, Hanover, NH; Department of Neurology (F.C.), UMass Medical School, Worcester, MA; Department of Neurology (H.L.H.), Maine Medical Center, Scarborough; and Department of Neurology (K.N.), University of Vermont Medical Center, Burlington
| | - Lindsay M Schommer
- From the Departments of Neurology (N.A.S., S.S.S., L.M.S., M.T.M., E.T.K., B.J.) and Psychiatry (R.M.R.), Dartmouth-Hitchcock Medical Center, Lebanon; Geisel School of Medicine (L.M.S., W.Z., T.D.T., E.T.K., R.M.R., B.J.), Dartmouth College, Hanover, NH; Department of Neurology (F.C.), UMass Medical School, Worcester, MA; Department of Neurology (H.L.H.), Maine Medical Center, Scarborough; and Department of Neurology (K.N.), University of Vermont Medical Center, Burlington
| | - Wenyan Zhao
- From the Departments of Neurology (N.A.S., S.S.S., L.M.S., M.T.M., E.T.K., B.J.) and Psychiatry (R.M.R.), Dartmouth-Hitchcock Medical Center, Lebanon; Geisel School of Medicine (L.M.S., W.Z., T.D.T., E.T.K., R.M.R., B.J.), Dartmouth College, Hanover, NH; Department of Neurology (F.C.), UMass Medical School, Worcester, MA; Department of Neurology (H.L.H.), Maine Medical Center, Scarborough; and Department of Neurology (K.N.), University of Vermont Medical Center, Burlington
| | - Tor D Tosteson
- From the Departments of Neurology (N.A.S., S.S.S., L.M.S., M.T.M., E.T.K., B.J.) and Psychiatry (R.M.R.), Dartmouth-Hitchcock Medical Center, Lebanon; Geisel School of Medicine (L.M.S., W.Z., T.D.T., E.T.K., R.M.R., B.J.), Dartmouth College, Hanover, NH; Department of Neurology (F.C.), UMass Medical School, Worcester, MA; Department of Neurology (H.L.H.), Maine Medical Center, Scarborough; and Department of Neurology (K.N.), University of Vermont Medical Center, Burlington
| | - Morgan T Mazanec
- From the Departments of Neurology (N.A.S., S.S.S., L.M.S., M.T.M., E.T.K., B.J.) and Psychiatry (R.M.R.), Dartmouth-Hitchcock Medical Center, Lebanon; Geisel School of Medicine (L.M.S., W.Z., T.D.T., E.T.K., R.M.R., B.J.), Dartmouth College, Hanover, NH; Department of Neurology (F.C.), UMass Medical School, Worcester, MA; Department of Neurology (H.L.H.), Maine Medical Center, Scarborough; and Department of Neurology (K.N.), University of Vermont Medical Center, Burlington
| | - Elaine T Kiriakopoulos
- From the Departments of Neurology (N.A.S., S.S.S., L.M.S., M.T.M., E.T.K., B.J.) and Psychiatry (R.M.R.), Dartmouth-Hitchcock Medical Center, Lebanon; Geisel School of Medicine (L.M.S., W.Z., T.D.T., E.T.K., R.M.R., B.J.), Dartmouth College, Hanover, NH; Department of Neurology (F.C.), UMass Medical School, Worcester, MA; Department of Neurology (H.L.H.), Maine Medical Center, Scarborough; and Department of Neurology (K.N.), University of Vermont Medical Center, Burlington
| | - Felicia Chu
- From the Departments of Neurology (N.A.S., S.S.S., L.M.S., M.T.M., E.T.K., B.J.) and Psychiatry (R.M.R.), Dartmouth-Hitchcock Medical Center, Lebanon; Geisel School of Medicine (L.M.S., W.Z., T.D.T., E.T.K., R.M.R., B.J.), Dartmouth College, Hanover, NH; Department of Neurology (F.C.), UMass Medical School, Worcester, MA; Department of Neurology (H.L.H.), Maine Medical Center, Scarborough; and Department of Neurology (K.N.), University of Vermont Medical Center, Burlington
| | - Heidi L Henninger
- From the Departments of Neurology (N.A.S., S.S.S., L.M.S., M.T.M., E.T.K., B.J.) and Psychiatry (R.M.R.), Dartmouth-Hitchcock Medical Center, Lebanon; Geisel School of Medicine (L.M.S., W.Z., T.D.T., E.T.K., R.M.R., B.J.), Dartmouth College, Hanover, NH; Department of Neurology (F.C.), UMass Medical School, Worcester, MA; Department of Neurology (H.L.H.), Maine Medical Center, Scarborough; and Department of Neurology (K.N.), University of Vermont Medical Center, Burlington
| | - Keith Nagle
- From the Departments of Neurology (N.A.S., S.S.S., L.M.S., M.T.M., E.T.K., B.J.) and Psychiatry (R.M.R.), Dartmouth-Hitchcock Medical Center, Lebanon; Geisel School of Medicine (L.M.S., W.Z., T.D.T., E.T.K., R.M.R., B.J.), Dartmouth College, Hanover, NH; Department of Neurology (F.C.), UMass Medical School, Worcester, MA; Department of Neurology (H.L.H.), Maine Medical Center, Scarborough; and Department of Neurology (K.N.), University of Vermont Medical Center, Burlington
| | - Robert M Roth
- From the Departments of Neurology (N.A.S., S.S.S., L.M.S., M.T.M., E.T.K., B.J.) and Psychiatry (R.M.R.), Dartmouth-Hitchcock Medical Center, Lebanon; Geisel School of Medicine (L.M.S., W.Z., T.D.T., E.T.K., R.M.R., B.J.), Dartmouth College, Hanover, NH; Department of Neurology (F.C.), UMass Medical School, Worcester, MA; Department of Neurology (H.L.H.), Maine Medical Center, Scarborough; and Department of Neurology (K.N.), University of Vermont Medical Center, Burlington
| | - Barbara Jobst
- From the Departments of Neurology (N.A.S., S.S.S., L.M.S., M.T.M., E.T.K., B.J.) and Psychiatry (R.M.R.), Dartmouth-Hitchcock Medical Center, Lebanon; Geisel School of Medicine (L.M.S., W.Z., T.D.T., E.T.K., R.M.R., B.J.), Dartmouth College, Hanover, NH; Department of Neurology (F.C.), UMass Medical School, Worcester, MA; Department of Neurology (H.L.H.), Maine Medical Center, Scarborough; and Department of Neurology (K.N.), University of Vermont Medical Center, Burlington
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Busse KR, Lemon SC, Comerford BP, Islam NS, Ulin BF, Eriksen MP, Ammerman AS. Prevention Research Centers and COVID-19: Models of a Community-Engaged Response to a Public Health Emergency. Public Health Rep 2022; 137:226-233. [PMID: 35060805 PMCID: PMC8900237 DOI: 10.1177/00333549211059491] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 02/15/2024] Open
Abstract
For more than 30 years, the network of Centers for Disease Control and Prevention (CDC)-funded Prevention Research Centers (PRCs) has worked with local communities and partners to implement and evaluate public health interventions and policies for the prevention of disease and promotion of health. The COVID-19 pandemic tested the PRC network's ability to rapidly respond to multiple, simultaneous public health crises. On April 28, 2020, to assess the network's engagement with activities undertaken in response to the early phase of the pandemic, PRC network leadership distributed an online survey to the directors of 34 currently or formerly funded PRCs, asking them to report their PRCs' engagement with predetermined activities across 9 topical areas and provide case studies exemplifying that engagement. We received responses from 24 PRCs, all of which reported engagement with at least 1 of the 9 topical areas (mean, 5). The topical areas with which the greatest number of PRCs reported engagement were support of frontline agencies (21 of 24, 88%) and support of activities related to health care (21 of 24, 88%). The mean number of activities with which PRCs reported engagement was 11. The PRCs provided more than 90 case studies exemplifying their work. The results of the survey indicated that the PRCs mobilized their personnel and resources to support the COVID-19 response in less than 6 weeks. We posit that the speed of this response was due, in part, to the broad and diverse expertise of PRC personnel and long-standing partnerships between PRCs and the communities in which they work.
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Affiliation(s)
- Kyle R. Busse
- Center for Health Promotion and Disease Prevention, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
- Department of Nutrition, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
| | - Stephenie C. Lemon
- University of Massachusetts Worcester Prevention Research Center, University of Massachusetts Medical School, Worcester, MA, USA
- Division of Preventive and Behavioral Medicine, Department of Population and Quantitative Health Sciences, University of Massachusetts Medical School, Worcester, MA, USA
| | | | - Nadia S. Islam
- New York University-City University of New York Prevention Research Center, New York University Grossman School of Medicine, New York, NY, USA
- Section for Health Equity, Department of Population Health, New York University Grossman School of Medicine, New York, NY, USA
| | - Brigette F. Ulin
- Division of Population Health, National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention, Atlanta, GA, USA
| | | | - Alice S. Ammerman
- Center for Health Promotion and Disease Prevention, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
- Department of Nutrition, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
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Camp EJ, Quon RJ, Sajatovic M, Briggs F, Brownrigg B, Janevic MR, Meisenhelter S, Steimel SA, Testorf ME, Kiriakopoulos E, Mazanec MT, Fraser RT, Johnson EK, Jobst BC. Supervised machine learning to predict reduced depression severity in people with epilepsy through epilepsy self-management intervention. Epilepsy Behav 2022; 127:108548. [PMID: 35042160 DOI: 10.1016/j.yebeh.2021.108548] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/20/2021] [Revised: 12/23/2021] [Accepted: 12/29/2021] [Indexed: 11/03/2022]
Abstract
OBJECTIVE To develop a classifier that predicts reductions in depression severity in people with epilepsy after participation in an epilepsy self-management intervention. METHODS Ninety-three people with epilepsy from three epilepsy self-management randomized controlled trials from the Managing Epilepsy Well (MWE) Network integrated research database met the inclusion criteria. Supervised machine learning algorithms were utilized to develop prediction models for changes in self-reported depression symptom severity. Features considered by the machine learning classifiers include age, gender, race, ethnicity, education, study type, baseline quality of life, and baseline depression symptom severity. The models were trained and evaluated on their ability to predict clinically meaningful improvement (i.e., a reduction of greater than three points on the nine-item Patient Health Questionnaire (PHQ-9)) between baseline and follow-up (<=12 weeks) depression scores. Models tested were a Multilayer Perceptron (ML), Random Forest (RF), Support Vector Machine (SVM), Logistic Regression with Stochastic Gradient Descent (SGD), K-nearest Neighbors (KNN), and Gradient Boosting (GB). A separate, outside dataset of 41 people with epilepsy was used in a validation exercise to examine the top-performing model's generalizability and performance with external data. RESULTS All six classifiers performed better than our baseline mode classifier. Support Vector Machine had the best overall performance (average area under the curve [AUC] = 0.754, highest subpopulation AUC = 0.963). Our analysis of the SVM features revealed that higher baseline depression symptom severity, study type (i.e., intervention program goals), higher baseline quality of life, and race had the strongest influence on increasing the likelihood that a subject would experience a clinically meaningful improvement in depression scores. From the validation exercise, our top-performing SVM model performed similarly or better than the average SVM model with the outside dataset (average AUC = 0.887). SIGNIFICANCE We trained an SVM classifier that offers novel insight into subject-specific features that are important for predicting a clinically meaningful improvement in subjective depression scores after enrollment in a self-management program. We provide evidence for machine learning to select subjects that may benefit most from a self-management program and indicate important factors that self-management programs should collect to develop improved digital tools.
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Affiliation(s)
- Edward J Camp
- Department of Neurology, Dartmouth-Hitchcock Medical Center, Lebanon, NH 03756, United States.
| | - Robert J Quon
- Geisel School of Medicine, Dartmouth College, Hanover, NH 03755, United States.
| | - Martha Sajatovic
- Case Western Reserve University School of Medicine, Cleveland, OH 44106, United States.
| | - Farren Briggs
- Case Western Reserve University School of Medicine, Cleveland, OH 44106, United States.
| | - Brittany Brownrigg
- Case Western Reserve University School of Medicine, Cleveland, OH 44106, United States.
| | - Mary R Janevic
- Center for Managing Chronic Disease, University of Michigan, Ann Arbor, MI 48109, United States.
| | - Stephen Meisenhelter
- Department of Neurology, Dartmouth-Hitchcock Medical Center, Lebanon, NH 03756, United States.
| | - Sarah A Steimel
- Geisel School of Medicine, Dartmouth College, Hanover, NH 03755, United States.
| | - Markus E Testorf
- Department of Neurology, Dartmouth-Hitchcock Medical Center, Lebanon, NH 03756, United States; Thayer School of Engineering, Dartmouth College, Hanover, NH 03755, United States.
| | - Elaine Kiriakopoulos
- Department of Neurology, Dartmouth-Hitchcock Medical Center, Lebanon, NH 03756, United States.
| | - Morgan T Mazanec
- Department of Neurology, Dartmouth-Hitchcock Medical Center, Lebanon, NH 03756, United States.
| | - Robert T Fraser
- Department of Rehabilitation Medicine, University of Washington, Seattle, WA 98104, United States.
| | - Erica K Johnson
- Health Promotion Research Center, University of Washington, Seattle, WA 98105, United States.
| | - Barbara C Jobst
- Department of Neurology, Dartmouth-Hitchcock Medical Center, Lebanon, NH 03756, United States; Geisel School of Medicine, Dartmouth College, Hanover, NH 03755, United States.
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Samanta D, Elumalai V, Hoyt ML, Modi AC, Sajatovic M. A qualitative study of epilepsy self-management barriers and facilitators in Black children and caregivers in Arkansas. Epilepsy Behav 2022; 126:108491. [PMID: 34929473 PMCID: PMC8764703 DOI: 10.1016/j.yebeh.2021.108491] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/15/2021] [Revised: 12/01/2021] [Accepted: 12/01/2021] [Indexed: 01/03/2023]
Abstract
OBJECTIVES To identify facilitators and barriers of epilepsy self-management practices among Black children and caregivers. METHODS Qualitative semi-structured in-depth interviews were conducted with 11 child-caregiver dyads (11 children with epilepsy and 11 caregivers). A deductive-inductive analysis was undertaken to describe the range of barriers and facilitators significant to participants. RESULTS The barriers and facilitators were classified into 3 management themes: epilepsy-specific knowledge and information, treatment, and lifestyle. Within these themes, several important subthemes were identified. Two subthemes related to knowledge barriers emerged: children and caregivers' limited understanding and retention of complex written and spoken information and variable training and confidence in seizure first-aid. In contrast, facilitators for introducing and encouraging access to epilepsy self-management concepts were participants' eagerness to learn about this topic and a keen interest in using educational materials enriched with visual aids on a phone platform as an adjunct to in-person education. The second theme revealed various practical barriers to optimum treatment adherence, including mistrust of the healthcare system. In comparison, caregivers' collaborative approach and innovative strategies were identified as facilitators for treatment adherence. Finally, the lifestyle management barriers included a lack of defined processes to adopt healthy behaviors and challenges with disclosing epilepsy. Facilitators of this theme were comprised of building a team around the child to foster wellbeing and making healthy habits a fun and joyful experience for children. DISCUSSION Qualitative evidence in this study highlights caregivers' mistrust in the healthcare system and the lack of community support. Culturally competent interventions may improve access to and quality and utilization of self-management programs in Black children and families while reducing disparities.
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Affiliation(s)
- Debopam Samanta
- Neurology Division, Department of Pediatrics, University of Arkansas for Medical Sciences, Little Rock, AR, USA.
| | - Vimala Elumalai
- Division of Neurology, Arkansas Children’s Hospital, United States of America
| | - Megan Leigh Hoyt
- Division of Neurology, Arkansas Children’s Hospital, United States of America
| | - Avani C. Modi
- Department of Pediatrics, Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children’s Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH, USA
| | - Martha Sajatovic
- Neurological and Behavioral Outcomes Center, Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center, Cleveland, Ohio,Department of Psychiatry, Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center, Cleveland, Ohio
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Kottapalli I, Needham K, Colón-Zimmermann K, Richter N, Schrag K, Ryan ER, Storer N, Sarna K, Briggs FBS, Rentsch J, Sajatovic M. A community-targeted implementation of self-management for people with epilepsy and a history of negative health events (SMART): A research and community partnership to reduce epilepsy burden. Epilepsy Behav 2022; 126:108440. [PMID: 34920349 DOI: 10.1016/j.yebeh.2021.108440] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/03/2021] [Revised: 11/09/2021] [Accepted: 11/09/2021] [Indexed: 11/29/2022]
Abstract
AIMS Self-management for people with epilepsy and a history of negative health events (SMART) is a behavioral intervention that has been demonstrated to reduce epilepsy-related complications and improve physical and mental health functioning among people with epilepsy (PWE) [1]. The Community-SMART (C-SMART) initiative was a 4-month prospective implementation of feasibility and pre/post outcomes of SMART in a community setting and in collaboration with key epilepsy service stakeholders. METHODS Self-management for people with epilepsy and a history of negative health events is a group-format, entirely virtual intervention delivered in eight 60-90 sessions over the course of 8-10 weeks. The C-SMART initiative used research staff to guide intervention performance evaluation and staff of a regional epilepsy advocacy agency to assist with community engagement. Process evaluations included outreach and engagement efforts needed to reach PWE, the barriers and facilitators to roll-out, and participant retention and satisfaction. Outcomes included depressive symptoms and epilepsy self-management competency. RESULTS Thirty individuals were enrolled in 3 "cohorts" of approximately 10 PWE per cohort. Mean age of participants was 48.50 (standard deviation 16.15) years, 60% were female and 53.3% were African-American. Individuals had epilepsy, on average, for over 2 decades, were on approximately 2 prescribed antiepileptic drugs (AEDs) and had an average of just over 6 seizures in the last 30 days. Over 63% had a comorbid mental health condition. There were 23 individuals (76.7%) who were retained at the 4-month follow-up. Baseline to 4-month outcomes for depression and epilepsy self-management were significantly improved. Most (90%) of participants reported high levels of satisfaction with the program. CONCLUSIONS The SMART epilepsy self-management program can be successfully implemented in partnership with epilepsy-focused community partners, is acceptable to participants and associated with improved outcomes. Future work might consider how to make virtual epilepsy self-management available to the full spectrum of PWE.
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Affiliation(s)
| | | | - Kari Colón-Zimmermann
- Department of Psychiatry and of Neurology, Case Western Reserve University School of Medicine, Cleveland, OH, USA; Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, OH, USA
| | | | | | - Eleanor R Ryan
- Department of Psychiatry and of Neurology, Case Western Reserve University School of Medicine, Cleveland, OH, USA
| | - Norma Storer
- Department of Psychiatry and of Neurology, Case Western Reserve University School of Medicine, Cleveland, OH, USA
| | - Kaylee Sarna
- Department of Psychiatry and of Neurology, Case Western Reserve University School of Medicine, Cleveland, OH, USA
| | - Farren B S Briggs
- Department of Population Health and Quantitative Science, Case Western Reserve University School of Medicine, Cleveland, OH, USA
| | - Julie Rentsch
- Department of Psychiatry and of Neurology, Case Western Reserve University School of Medicine, Cleveland, OH, USA; Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, OH, USA
| | - Martha Sajatovic
- Department of Psychiatry and of Neurology, Case Western Reserve University School of Medicine, Cleveland, OH, USA; Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, OH, USA.
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O'Kula SS, Briggs FBS, Brownrigg B, Sarna K, Rosales O, Shegog R, Fraser RT, Johnson EK, Quarells RC, Friedman D, Sajatovic M, Spruill TM. Depression and suicidality among Hispanics with epilepsy: Findings from the Managing Epilepsy Well (MEW) Network integrated database. Epilepsy Behav 2021; 125:108388. [PMID: 34798558 DOI: 10.1016/j.yebeh.2021.108388] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/27/2021] [Revised: 10/03/2021] [Accepted: 10/16/2021] [Indexed: 11/17/2022]
Abstract
OBJECTIVE Although psychiatric disorders are more common among people with epilepsy,2 depression and suicidal ideation among Hispanics with epilepsy remain understudied. We examined the prevalence and correlates of depression and suicidal ideation among Hispanic adults with epilepsy who participated in self-management studies in the Managing Epilepsy Well3 Network. METHODS This cross-sectional analysis of pooled data from ten studies used the Patient Health Questionnaire-94 or Neurological Disease Depression Inventory-Epilepsy5 to examine the prevalence of elevated depressive symptoms (PHQ ≥ 10, NDDI-E ≥ 15) and suicidal ideation (PHQ-9 item 9 ≥ 1, NDDI-E item 4 ≥ 2). Multilevel mixed-effects logistic regression models examined associations between ethnicity, elevated depressive symptoms, and suicidal ideation among PWE. Secondary analyses examined correlates of elevated depressive symptoms and suicidal ideation among Hispanic PWE. RESULTS Of 559 participants, 49.6% (n = 277) were Hispanic. Elevated depressive symptoms were endorsed by 38.1% (n = 213) of all participants (32.5% of Hispanics); suicidal ideation was endorsed by 18.4% (n = 103) of all participants (16.3% of Hispanics). After adjustment for sociodemographic and health attributes, Hispanic PWE had a 44% lower prevalence of elevated depressive symptoms (OR = 0.56, CI 0.37-0.84, p = 0.0056) compared to non-Hispanics but similar rates of suicidal ideation (OR = 0.84, CI 0.45-1.58, p = 0.59). Acculturation measures were available for 256 (92.4%) of Hispanic PWE: language preference was Spanish for 62.9%, 46.1% were foreign-born. Spanish-speaking Hispanics were less likely than English-speaking Hispanics to report elevated depressive symptoms (OR = 0.43, CI 0.19-0.97, p = 0.041); however, Hispanics who reported fair or poor health status had a four-fold higher depression prevalence compared to those who reported excellent or very good health status [reference group] (OR = 4.44, CI 1.50-13.18, p = 0.0071). Of the Hispanics who provided prior 30-day seizure data, ≥1 monthly seizure was independently associated with higher depression prevalence (OR = 3.11, CI 1.29-7.45, p = 0.01). Being foreign-born was not associated with elevated depressive symptoms or suicidal ideation prevalence. CONCLUSIONS In a large, geographically diverse sample of PWE, elevated depressive symptoms were significantly lower in Hispanics compared to non-Hispanics. Spanish language preference was associated with a lower prevalence of elevated depressive symptoms among Hispanic PWE. Future studies should include acculturation data to better screen for depression and suicidal ideation risk and optimize interventions for Hispanic PWE.
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Affiliation(s)
- Susanna S O'Kula
- Department of Neurology, New York University Langone Health, 222 East 41st Street, 9th Fl, New York, NY 10017, United States.
| | - Farren B S Briggs
- Department of Population and Quantitative Health Sciences, Case Western Reserve University School of Medicine, 10900 Euclid Ave, Cleveland, OH 44106, United States.
| | - Brittany Brownrigg
- Department of Psychiatry, Case Western Reserve University School of Medicine, University Hospitals of Cleveland Medical Center, 10900 Euclid Ave, Cleveland, OH 44106, United States.
| | - Kaylee Sarna
- Department of Psychiatry, Case Western Reserve University School of Medicine, University Hospitals of Cleveland Medical Center, 10900 Euclid Ave, Cleveland, OH 44106, United States.
| | - Omar Rosales
- University of Texas Health Science Center at Houston School of Public Health, 1200 Pressler Street, Houston, TX 77030, United States.
| | - Ross Shegog
- University of Texas Health Science Center at Houston School of Public Health, 1200 Pressler Street, Houston, TX 77030, United States.
| | - Robert T Fraser
- Department of Rehabilitation Medicine/Epilepsy Center, University of Washington, 325 9th Avenue, Seattle, WA 98104, United States.
| | - Erica K Johnson
- Department of Rehabilitation Medicine/Epilepsy Center, University of Washington, 325 9th Avenue, Seattle, WA 98104, United States.
| | - Rakale C Quarells
- Department of Community Health and Preventive Medicine, Morehouse School of Medicine, 720 Westview Drive SW, Atlanta, GA 30310, United States.
| | - Daniel Friedman
- Department of Neurology, New York University Langone Health, 222 East 41st Street, 9th Fl, New York, NY 10017, United States.
| | - Martha Sajatovic
- Department of Psychiatry, Case Western Reserve University School of Medicine, University Hospitals of Cleveland Medical Center, 10900 Euclid Ave, Cleveland, OH 44106, United States.
| | - Tanya M Spruill
- Department of Population Health, New York University Grossman School of Medicine, 550 First Avenue, New York, NY 10016, United States.
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Ghearing GR, Briggs F, Cassidy K, Privitera M, Blixen C, Sajatovic M. A randomized controlled trial of self-management for people with epilepsy and a history of negative health events (SMART) targeting rural and underserved people with epilepsy: a methodologic report. Trials 2021; 22:821. [PMID: 34801061 PMCID: PMC8605559 DOI: 10.1186/s13063-021-05762-z] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/22/2021] [Accepted: 10/26/2021] [Indexed: 11/30/2022] Open
Abstract
BACKGROUND Many people living with epilepsy (PLWE) reside in rural communities, and epilepsy self-management may help address some of the gaps in epilepsy care for these communities. A prior randomized control trial of a remotely delivered, Web-based group format 12-week self-management program (SMART) conducted in Northeast Ohio, a primarily urban and suburban community, demonstrated improved outcomes in negative health events such as depression symptoms and quality of life. However, there is a paucity of research addressing the needs of PLWE in rural settings. METHODS The present study leverages collaboration between investigators from 2 mid-western US states (Ohio and Iowa) to replicate testing of the SMART intervention and prioritize delivery to PLWE in rural and semi-rural communities. In phase 1, investigators will refine the SMART program using input from community stakeholders. A Community Advisory Board will then be convened to help identify barriers to trial implementation and strategies to overcome barriers. In phase 2, the investigators will conduct a 6-month prospective randomized control trial of the SMART program compared to 6-month waitlist controls, with the primary outcome being changes in negative health events defined as seizure, self-harm attempt, emergency department visit, or hospitalization. Additional outcomes of interest include quality of life and physical and mental health functioning. The study will also assess process measures of program adopters and system end-users to inform future outreach, education, and self-management strategies for PLWE. DISCUSSION The method of this study employs lived experience of PLWE and those who provide care for PLWE in rural and underserved populations to refine a remotely delivered Web-based self-management program, to improve recruitment and retention, and to deliver the intervention. Pragmatic outcomes important to PLWE, payers, and policymakers will be assessed. This study will provide valuable insights on implementing future successful self-management programs. TRIAL REGISTRATION ClinicalTrials.gov NCT04705441 . Registered on January 12, 2021.
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Affiliation(s)
- Gena R. Ghearing
- Department of Neurology, Carver College of Medicine and University of Iowa Health Center, Iowa City, IA USA
| | - Farren Briggs
- Department of Population and Quantitative Health Sciences, Case Western Reserve University School of Medicine, Cleveland, OH USA
| | - Kristin Cassidy
- Department of Psychiatry & of Neurology, Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center, Cleveland, OH USA
| | - Michael Privitera
- UC Gardner Neuroscience Institute, University of Cincinnati College of Medicine, Cincinnati, OH USA
| | - Carol Blixen
- Department of Psychiatry & Neurological and Behavioral Outcomes Center, Case Western Reserve University School of Medicine, Cleveland, OH USA
| | - Martha Sajatovic
- Department of Psychiatry & of Neurology, Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center, Cleveland, OH USA
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Spruill TM, Friedman D, Diaz L, Butler MJ, Goldfeld KS, O'Kula S, Montesdeoca J, Payano L, Shallcross AJ, Kaur K, Tau M, Vazquez B, Jongeling A, Ogedegbe G, Devinsky O. Telephone-based depression self-management in Hispanic adults with epilepsy: a pilot randomized controlled trial. Transl Behav Med 2021; 11:1451-1460. [PMID: 33963873 PMCID: PMC8320882 DOI: 10.1093/tbm/ibab045] [Citation(s) in RCA: 14] [Impact Index Per Article: 3.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/30/2022] Open
Abstract
Depression is associated with adverse outcomes in epilepsy but is undertreated in this population. Project UPLIFT, a telephone-based depression self-management program, was developed for adults with epilepsy and has been shown to reduce depressive symptoms in English-speaking patients. There remains an unmet need for accessible mental health programs for Hispanic adults with epilepsy. The purpose of this study was to evaluate the feasibility, acceptability, and effects on depressive symptoms of a culturally adapted version of UPLIFT for the Hispanic community. Hispanic patients with elevated depressive symptoms (n = 72) were enrolled from epilepsy clinics in New York City and randomized to UPLIFT or usual care. UPLIFT was delivered in English or Spanish to small groups in eight weekly telephone sessions. Feasibility was assessed by recruitment, retention, and adherence rates and acceptability was assessed by self-reported satisfaction with the intervention. Depressive symptoms (PHQ-9 scores) were compared between study arms over 12 months. The mean age was 43.3±11.3, 71% of participants were female and 67% were primary Spanish speakers. Recruitment (76% consent rate) and retention rates (86–93%) were high. UPLIFT participants completed a median of six out of eight sessions and satisfaction ratings were high, but rates of long-term practice were low. Rates of clinically significant depressive symptoms (PHQ-9 ≥5) were lower in UPLIFT versus usual care throughout follow-up (63% vs. 72%, 8 weeks; 40% vs. 70%, 6 months; 47% vs. 70%, 12 months). Multivariable-adjusted regressions demonstrated statistically significant differences at 6 months (OR = 0.24, 95% CI, 0.06–0.93), which were slightly reduced at 12 months (OR = 0.30, 95% CI, 0.08–1.16). Results suggest that UPLIFT is feasible and acceptable among Hispanic adults with epilepsy and demonstrate promising effects on depressive symptoms. Larger trials in geographically diverse samples are warranted.
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Affiliation(s)
- Tanya M Spruill
- Department of Population Health, NYU Grossman School of Medicine, New York, NY, USA
| | - Daniel Friedman
- Department of Neurology, NYU Langone Health, New York, NY, USA
| | - Laura Diaz
- Department of Population Health, NYU Grossman School of Medicine, New York, NY, USA
| | - Mark J Butler
- Department of Population Health, NYU Grossman School of Medicine, New York, NY, USA.,Center for Personalized Health, Feinstein Institutes for Medical Research, Northwell Health, Manhasset, NY, USA
| | - Keith S Goldfeld
- Department of Population Health, NYU Grossman School of Medicine, New York, NY, USA
| | - Susanna O'Kula
- Department of Neurology, NYU Langone Health, New York, NY, USA
| | | | - Leydi Payano
- Department of Population Health, NYU Grossman School of Medicine, New York, NY, USA
| | - Amanda J Shallcross
- Department of Population Health, NYU Grossman School of Medicine, New York, NY, USA
| | - Kiranjot Kaur
- Department of Population Health, NYU Grossman School of Medicine, New York, NY, USA
| | - Michael Tau
- Department of Neurology, NYU Langone Health, New York, NY, USA
| | - Blanca Vazquez
- Department of Neurology, NYU Langone Health, New York, NY, USA
| | - Amy Jongeling
- Department of Neurology, NYU Langone Health, New York, NY, USA
| | - Gbenga Ogedegbe
- Department of Population Health, NYU Grossman School of Medicine, New York, NY, USA.,Institute for Excellence in Health Equity, New York University Grossman School of Medicine, New York, NY, USA
| | - Orrin Devinsky
- Department of Neurology, NYU Langone Health, New York, NY, USA
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22
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Blixen C, Ghearing G, Wade O, Colon-Zimmerman K, Tyrrell M, Sajatovic M. Engaging stakeholders in the refinement of an evidence-based remotely delivered epilepsy self-management program for rural populations. Epilepsy Behav 2021; 118:107942. [PMID: 33845345 PMCID: PMC8107125 DOI: 10.1016/j.yebeh.2021.107942] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/15/2020] [Revised: 03/15/2021] [Accepted: 03/18/2021] [Indexed: 11/29/2022]
Abstract
A growing body of research supports self-management approaches that can improve outcomes in people living with epilepsy (PLWE). An evidence-based remotely delivered self-management program (SMART) that was successfully delivered in an urban/suburban setting has the potential to be particularly helpful to PLWE who live in rural communities, where heavy stigma burden and limited access to healthcare is common. In this Phase 1 exploratory study, focus groups of key rural stakeholders (PLWE, family members, care providers) were used to: (1) gather information on factors that may impede or facilitate participation in SMART and (2) elicit overall perceptions of the program, as well as suggestions and feedback for refining it for implementation in Phase 2 of the randomized controlled study (RCT). Qualitative data analysis revealed that focus group participants identified geographic and social isolation, and the more limited access to epilepsy care, as the major barriers to epilepsy self-management for rural populations. However, they felt strongly that SMART could fill an epilepsy care gap in rural communities, and provided suggestions for recruitment and retention strategies of subjects, as well as improvement/modifications to the program curriculum for the Phase 2 RCT.
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Affiliation(s)
- Carol Blixen
- Department of Psychiatry and Neurological and Behavioral Outcomes Center, Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center, Cleveland, OH, USA.
| | - Gena Ghearing
- Department of Neurology, University of Iowa Health Care, Iowa City, IA, USA
| | - Owen Wade
- Department of Neurology, University of Iowa Health Care, Iowa City, IA, USA
| | - Kari Colon-Zimmerman
- Department of Psychiatry and Neurological and Behavioral Outcomes Center, Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center, Cleveland, OH, USA
| | - Maegan Tyrrell
- Department of Neurology, University of Iowa Health Care, Iowa City, IA, USA
| | - Martha Sajatovic
- Department of Psychiatry and Neurological and Behavioral Outcomes Center, Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center, Cleveland, OH, USA; Department of Psychiatry & Neurology and Neurological and Behavioral Outcomes Center, Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center, Cleveland, OH, USA
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23
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Engel ML, Shanley R, Scal PB, Kunin-Batson A. Anxiety and depressive symptoms in adolescents and young adults with epilepsy: The role of illness beliefs and social factors. Epilepsy Behav 2021; 116:107737. [PMID: 33493808 DOI: 10.1016/j.yebeh.2020.107737] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/26/2020] [Revised: 12/15/2020] [Accepted: 12/20/2020] [Indexed: 01/08/2023]
Abstract
PURPOSE This study examined (1) the prevalence of anxiety and depressive symptoms among adolescents and young adults (AYA) with epilepsy and (2) demographic and medical characteristics, illness beliefs, and social factors associated with anxiety and depressive symptoms to guide intervention development. METHODS A community-based sample of AYA with epilepsy (n = 179, ages 13-24 years, 39% male) completed online questionnaires measuring anxiety symptoms (GAD-7), depressive symptoms (PHQ-9), illness beliefs (helplessness; acceptance; perceived benefits), and social factors (family functioning; social stigma; connectedness). Participants also reported medical information (epilepsy type; years since diagnosis; time since last seizure; current medications). RESULTS Prevalence of clinically significant symptoms of anxiety and depression, 36% and 35%, respectively, was high compared to population prevalence. In multivariable regression models, demographic and medical factors explained only 2% of the variance in depressive symptoms and 6% in anxiety symptoms. Illness beliefs and social factors accounted for a majority of the explanatory power of both models (partial R2 = 0.37 for anxiety; 0.44 for depression). Specifically, acceptance, family functioning, and social stigma accounted for the greatest variance (p's < 0.01). CONCLUSIONS This study found a high prevalence of anxiety and depressive symptoms among AYA with epilepsy. Epilepsy variables (seizure type, medications, and years since diagnosis) were not associated with these psychological symptoms. Rather, the majority of variance in symptoms was accounted for by potentially modifiable beliefs and social factors. Interventions that promote illness acceptance, enhance family functioning, and reduce social stigma may ameliorate psychological distress among AYA with epilepsy.
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Affiliation(s)
- Melissa L Engel
- Department of Psychology, Emory University, 36 Eagle Row, Atlanta, GA 30322, USA.
| | - Ryan Shanley
- Masonic Cancer Center Biostatistics Core, University of Minnesota, 717 Delaware Street SE, Minneapolis, MN 55455, USA
| | - Peter B Scal
- Department of Pediatrics, University of Minnesota, 717 Delaware Street SE, Minneapolis, MN 55455, USA
| | - Alicia Kunin-Batson
- Department of Pediatrics, University of Minnesota, 717 Delaware Street SE, Minneapolis, MN 55455, USA
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Sajatovic M, Wilson B, Shegog R, B S Briggs F, Escoffery C, Jobst BC, Johnson EK, Fraser RT, Quarells RC, Spruill TM. The Managing Epilepsy Well (MEW) network database: Lessons learned in refining and implementing an integrated data tool in service of a national U.S. Research Collaborative. Epilepsy Behav 2021; 115:107650. [PMID: 33421855 DOI: 10.1016/j.yebeh.2020.107650] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/14/2020] [Accepted: 11/17/2020] [Indexed: 12/19/2022]
Abstract
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.
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Affiliation(s)
- Martha Sajatovic
- Department of Psychiatry, Case Western Reserve University School of Medicine, Cleveland, OH, United States; Department of Neurology Case, Western Reserve University School of Medicine, Cleveland, OH, United States; Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, OH, United States.
| | - Betsy Wilson
- Department of Neurology Case, Western Reserve University School of Medicine, Cleveland, OH, United States; Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, OH, United States
| | - Ross Shegog
- University of Texas Health Science Center, Houston School of Public Health, Houston, TX, United States
| | - Farren B S Briggs
- Department of Population and Quantitative Health Sciences, Case Western Reserve University School of Medicine, Cleveland, OH, United States
| | - Cam Escoffery
- Rollins School of Public Health, Emory University, Atlanta, GA, United States
| | - Barbara C Jobst
- Department of Neurology, Geisel School of Medicine at Dartmouth, Dartmouth College, Lebanon, NH, United States
| | - Erica K Johnson
- Health Promotion Research Center, University of Washington, Seattle, WA, United States
| | - Robert T Fraser
- Department of Rehabilitation Medicine, University of Washington, Seattle, WA, United States
| | - Rakale C Quarells
- Department of Community Health and Preventive Medicine, Morehouse School of Medicine, Atlanta, GA, United States
| | - Tanya M Spruill
- Department of Population Health, NYU Grossman School of Medicine, New York, NY, United States
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Terman SW, Hill CE, Burke JF. Disability in people with epilepsy: A nationally representative cross-sectional study. Epilepsy Behav 2020; 112:107429. [PMID: 32919202 DOI: 10.1016/j.yebeh.2020.107429] [Citation(s) in RCA: 18] [Impact Index Per Article: 3.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/24/2020] [Revised: 08/19/2020] [Accepted: 08/19/2020] [Indexed: 12/21/2022]
Abstract
OBJECTIVE The objective of this study was to explore the prevalence and predictors of limitations causing disability in patients treated for seizures or epilepsy compared with patients without epilepsy. METHODS This was a retrospective cross-sectional study using the National Health and Nutrition Examination Survey (NHANES). We included all participants ≥20 years old for 2013-2018. We classified patients as having epilepsy if they reported taking at least one prescription medication to treat seizures or epilepsy. Physical, mental, and social limitations were determined from interview questions. We report the prevalence of any limitation and total number of limitations for participants without vs. with epilepsy using serial negative binomial regressions and severity of individual limitations according to epilepsy status. RESULTS We included 17,057 participants, of whom 148 (0.8%) had epilepsy. Overall, 80% (95% confidence interval [CI]: 73%-86%) with epilepsy vs. 38% (95% CI: 36%-39%) without epilepsy reported at least 1 limitation (p < 0.01). The mean number of limitations was 7.5 (95% CI: 6.2-8.8) for those with epilepsy vs. 2.4 (95% CI: 2.3-2.6) for those without epilepsy (p < 0.01). Epilepsy was associated with an incidence rate ratio (IRR) of 3.1 (95% CI: 2.6-3.7) in an unadjusted negative binomial regression. After adjusting for demographics and comorbidities, this association was no longer significant (IRR: 1.2, 95% CI: 0.9-1.7). Limitations cited by 40-50% of participants with epilepsy included stooping/kneeling/crouching, standing for long periods of time, and pushing/pulling objects. Limitation severity was consistently higher in patients with epilepsy. CONCLUSIONS Patients with epilepsy had 3.1 times as many physical, mental, or social limitations compared with those without epilepsy, and disability severity was consistently higher. This effect was attenuated after considering baseline variables such as smoking and depression severity. Our work implies the importance of structured mental health screening and self-management programs targeting mood, weight, and lifestyle as potential leverage points towards alleviating epilepsy-related disability.
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Affiliation(s)
- Samuel W Terman
- University of Michigan, Department of Neurology, Ann Arbor, MI 48109, USA; University of Michigan, Institute for Healthcare Policy and Innovation, Ann Arbor, MI 48109, USA.
| | - Chloe E Hill
- University of Michigan, Department of Neurology, Ann Arbor, MI 48109, USA; University of Michigan, Institute for Healthcare Policy and Innovation, Ann Arbor, MI 48109, USA.
| | - James F Burke
- University of Michigan, Department of Neurology, Ann Arbor, MI 48109, USA; University of Michigan, Institute for Healthcare Policy and Innovation, Ann Arbor, MI 48109, USA.
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Lee SA, Kim SJ. Self-efficacy in seizure management differentially correlated with quality of life in persons with epilepsy depending on seizure recurrence and felt stigma. Seizure 2020; 81:91-95. [DOI: 10.1016/j.seizure.2020.07.029] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/18/2020] [Revised: 07/26/2020] [Accepted: 07/28/2020] [Indexed: 01/06/2023] Open
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Chen D, Zhu L, Lin X, Hong Z, Li S, Liu L, Zhou D. Epilepsy control during an epidemic: emerging approaches and a new management framework. ACTA EPILEPTOLOGICA 2020. [PMCID: PMC7215138 DOI: 10.1186/s42494-020-00015-z] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/29/2022] Open
Abstract
Epidemics are a big threat to world health. The ongoing pandemic of corona virus disease 2019 (COVID-19) has caused a series of challenges to public health. One such challenge is the management of chronic diseases such as epilepsy during an epidemic event. Studies on this topic are rather limited and the related medical practice is full of uncertainty. Here we review recent development of potential approaches for epilepsy control during an epidemic and propose a new three-level management framework to address these challenges.
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Hixson JD, Braverman L. Digital tools for epilepsy: Opportunities and barriers. Epilepsy Res 2020; 162:106233. [DOI: 10.1016/j.eplepsyres.2019.106233] [Citation(s) in RCA: 10] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/04/2019] [Revised: 09/10/2019] [Accepted: 10/26/2019] [Indexed: 11/27/2022]
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Hong X, Liu C, Momotaz H, Cassidy K, Sajatovic M, Sahoo SS. Enhancing Multi-Center Patient Cohort Studies in the Managing Epilepsy Well (MEW) Network: Integrated Data Integration and Statistical Analysis. AMIA ... ANNUAL SYMPOSIUM PROCEEDINGS. AMIA SYMPOSIUM 2020; 2019:1071-1080. [PMID: 32308904 PMCID: PMC7153120] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Subscribe] [Scholar Register] [Indexed: 06/11/2023]
Abstract
Self-management techniques that assist patients with chronic conditions, such as epilepsy, diabetes, and arthritis, play an important role in managing and caring for their conditions. The US Center for Disease Control and Prevention (CDC)-funded Managing Epilepsy Well (MEW) Network consists of 11 study sites across the US that aims to develop and disseminate self-management techniques for epilepsy patients. Epilepsy affects more than 65 million patients worldwide with serious negative impact on their own as well as their family member's quality of life. Taking advantage of advances in biomedical informatics, the MEW Network has created an integrated database (MEW DB) using a common data model and two tiers of study variables. The MEW DB consists of 1680 patient data records covering a wide range of patient population nationwide. Therefore, there is growing interest in the use of the MEW DB for different cohort query analysis. To address the challenges in: (1) selecting appropriate MEW research studies based on inclusion/exclusion criteria; (2) creating a patient cohort for given research hypothesis; and (3) performing appropriate statistical tests; we have developed an integrated data query and statistical analysis informatics tool called Insight. The Insight platform features an intuitive user interface to support the three phases of study selection, patient cohort creation, and statistical testing with the use of an epilepsy domain ontology to support ontology-driven query expansion. We evaluate the Insight platform using two user evaluation methods of "first click testing" and "user satisfaction survey". In addition, we performed a time performance test of the Insight platform using four patient datasets and three statistical test. The results of the user evaluation show that Insight platform is strongly approved by the users and the results of the time performance show that there is marginal difference in performance as the volume of patient data increases in the MEW DB.
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Affiliation(s)
- Xinting Hong
- Population and Quantitative Health Sciences, School of Medicine, Case Western Reserve University, Cleveland, OH
| | - Chang Liu
- Population and Quantitative Health Sciences, School of Medicine, Case Western Reserve University, Cleveland, OH
| | - Hasina Momotaz
- Department of Neurology, University Hospitals Cleveland Medical Center, Cleveland, OH
| | - Kristin Cassidy
- Department of Neurology, University Hospitals Cleveland Medical Center, Cleveland, OH
| | - Martha Sajatovic
- Department of Neurology, University Hospitals Cleveland Medical Center, Cleveland, OH
| | - Satya S Sahoo
- Population and Quantitative Health Sciences, School of Medicine, Case Western Reserve University, Cleveland, OH
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Quon RJ, Mazanec MT, Schmidt SS, Andrew AS, Roth RM, MacKenzie TA, Sajatovic M, Spruill T, Jobst BC. Antiepileptic drug effects on subjective and objective cognition. Epilepsy Behav 2020; 104:106906. [PMID: 32006792 PMCID: PMC7064420 DOI: 10.1016/j.yebeh.2020.106906] [Citation(s) in RCA: 32] [Impact Index Per Article: 6.4] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/13/2019] [Revised: 01/07/2020] [Accepted: 01/07/2020] [Indexed: 11/29/2022]
Abstract
RATIONALE Cognitive impairment is one of the most common complaints for persons with epilepsy (PWE). These impairments are not only associated with seizures, but are also regularly reported as adverse effects of antiepileptic drugs (AEDs). Previous studies have examined cognitive effects of both AED monotherapy and polytherapy, yet there is limited research on these differences with respect to both subjective and objective cognition. The current study uses data from previous research conducted by the Centers for Disease Control and Prevention (CDC)-sponsored Managing Epilepsy Well (MEW) Network collaborative. We used three distinct archival datasets from the following: (1) the HOBSCOTCH efficacy trial at Dartmouth-Hitchcock Medical Center (HOB-1), (2) the multisite replication trial (HOB-2), and (3) epilepsy self-management research conducted at the NYU School of Medicine. METHODS This retrospective analysis combined baseline data from three datasets to determine how the number of AEDs and the type of AEDs were associated with subjective (patient-reported) and objective (examiner-assessed) cognition. Subjective cognition was captured using the cognitive subscale of the Quality of Life in Epilepsy Inventory (QOLIE-31) in all three datasets (n = 224), while objective cognition was measured using the Repeated Battery for the Assessment of Neuropsychological Status (RBANS) in the HOB-1 dataset (n = 65) and the Brief Test of Adult Cognition by Telephone (BTACT) in the HOB-2 dataset (n = 91). Multivariable linear regression was utilized for our initial assessments, followed by propensity score matching to provide stronger control of covariates. Matching was based on significantly different covariates, such as education, depression, and history of prior epilepsy surgery. Nonparametric statistical tests were utilized to compare these matched subjects. RESULTS Subjective cognitive impairment was significantly worse among individuals on polytherapy (2 + AEDs) compared with those on monotherapy (1 AED) (adjusted p = 0.041). These findings were consistent with our propensity score matched comparison of monotherapy and polytherapy, which indicated that polytherapy was associated with worse overall subjective cognition (adjusted p = 0.01), in addition to impairments on the RBANS (Total score p = 0.05) and specific subdomains of the BTACT (Episodic Verbal Memory p < 0.01, Working Memory p < 0.01, Processing Speed p < 0.01). Interestingly, older generation AEDs were associated with better language performance than newer generation and combined generation AED therapy (RBANS Language p = 0.03). These language-specific findings remained significant after controlling for the effects of topiramate and zonisamide (p = 0.04). CONCLUSIONS A greater number of AEDs is significantly and negatively associated with subjective and objective cognition in PWE, and is in line with previous research. Antiepileptic drug type did not, in itself, appear to be associated with subjective cognition. Our findings suggest that ineffective AEDs should be replaced, rather than introducing additional AEDs to a treatment regimen. Further, while subjective and objective cognition assessments were both sensitive at detecting differences based on AED status, the neuropsychological objective subdomains offer additional and specific insights into how cognition is impaired with AEDs.
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Affiliation(s)
- Robert J Quon
- Department of Neurology, Geisel School of Medicine at Dartmouth, Hanover, NH, USA.
| | - Morgan T Mazanec
- Department of Neurology, Dartmouth-Hitchcock Medical Center, Lebanon, NH, USA
| | - Samantha S Schmidt
- Department of Neurology, Dartmouth-Hitchcock Medical Center, Lebanon, NH, USA
| | - Angeline S Andrew
- Department of Neurology, Dartmouth-Hitchcock Medical Center, Lebanon, NH, USA; Department of Epidemiology, Geisel School of Medicine at Dartmouth, Hanover, NH, USA
| | - Robert M Roth
- Department of Psychiatry, Dartmouth-Hitchcock Medical Center, Lebanon, NH, USA
| | - Todd A MacKenzie
- Biomedical Data Science, Geisel School of Medicine at Dartmouth, Hanover, NH, USA; The Dartmouth Institute, Dartmouth College, Hanover, NH, USA
| | - Martha Sajatovic
- Department of Psychiatry, University Hospitals Cleveland Medical Center, Cleveland, OH, USA
| | - Tanya Spruill
- Department of Population Health, New York University Langone, New York, NY, USA; Department of Medicine, New York University Langone, New York, NY, USA
| | - Barbara C Jobst
- Department of Neurology, Geisel School of Medicine at Dartmouth, Hanover, NH, USA; Department of Neurology, Dartmouth-Hitchcock Medical Center, Lebanon, NH, USA
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Si Y, Xiao X, Xia C, Guo J, Hao Q, Mo Q, Niu Y, Sun H. Optimising epilepsy management with a smartphone application: a randomised controlled trial. Med J Aust 2020; 212:258-262. [PMID: 32092160 DOI: 10.5694/mja2.50520] [Citation(s) in RCA: 15] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/03/2019] [Accepted: 11/11/2019] [Indexed: 02/05/2023]
Abstract
OBJECTIVE To assess whether a practical intervention based upon a smartphone application (app) would improve self-management and seizure control in adults with epilepsy. DESIGN, SETTING Randomised, controlled trial in western China, December 2017 to August 2018. PARTICIPANTS 380 eligible people with epilepsy were recruited; 327 completed the 6-month follow-up (176 in the app group, 151 in the control group). MAIN OUTCOME MEASURES Self-management of epilepsy (measured with the validated Chinese Epilepsy Self-Management Scale, C-ESMS) and self-reported seizure frequency. RESULTS In the intention-to-treat analysis, the mean C-ESMS score increased significantly in the app group between baseline and the 6-month evaluation (from 121.7 [SD, 12.1] to 144.4 [SD, 10.0]; P < 0.001); improvements on the information management, medication management, and safety management subscales were also statistically significant. At 6 months, the mean overall C-ESMS score for the app group was significantly higher than that for the control group (125.4 [SD, 1.5]; P < 0.001). The proportion of patients who were seizure-free at the 6-month follow-up was larger for the app than the control group (54 of 190, 28% v 22 of 190, 12%), as was the proportion with reductions in frequency of between 75 and 100% (22 of 190, 12% v 8 of 190, 4%). Changes in C-ESMS score were not statistically associated with seizure frequency. CONCLUSIONS Using a smartphone app improved epilepsy self-management scores in people in western China. It should be further tested in larger populations in other areas. Our preliminary investigation of building digital communities for people with epilepsy should encourage similar approaches to managing other chronic diseases. TRIAL REGISTRATION Chinese Clinical Trial Registry, ChiCTR1900026864, 24 October 2019.
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Affiliation(s)
- Yang Si
- Sichuan Academy of Medical Sciences and Sichuan People's Hospital, Chengdu, Sichuan, China.,University of Electronic Science and Technology of China, Chengdu, Sichuan, China
| | - Xiaoqiang Xiao
- Sichuan Academy of Medical Sciences and Sichuan People's Hospital, Chengdu, Sichuan, China.,Sichuan Provincial Center for Mental Health, Sichuan Academy of Medical Sciences and Sichuan People's Hospital, Chengdu, Sichuan, China
| | - Cai Xia
- Sichuan Provincial Center for Mental Health, Sichuan Academy of Medical Sciences and Sichuan People's Hospital, Chengdu, Sichuan, China
| | - Jiang Guo
- Sichuan Academy of Medical Sciences and Sichuan People's Hospital, Chengdu, Sichuan, China
| | - Qiukui Hao
- National Clinical Research Center for Geriatrics, Sichuan University West China Hospital, Chengdu, Sichuan, China
| | - Qianning Mo
- Sichuan Academy of Medical Sciences and Sichuan People's Hospital, Chengdu, Sichuan, China
| | - Yulong Niu
- Key Laboratory of Bio-Resource and Eco-Environment, College of Life Sciences, Sichuan University, Chengdu, Sichuan, China
| | - Hongbin Sun
- Sichuan Academy of Medical Sciences and Sichuan People's Hospital, Chengdu, Sichuan, China
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Braga P, Mifsud J, D'Souza C, Clarke M, Honein A, Tovuudorj A, Pfäfflin M. Education and epilepsy: Examples of good practice and cooperation. Report of the IBE Commission on Education. Epilepsy Behav 2020; 103:106653. [PMID: 31761687 DOI: 10.1016/j.yebeh.2019.106653] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/14/2019] [Accepted: 10/14/2019] [Indexed: 12/31/2022]
Abstract
Education for patients, for families, for professionals, and for officials is one of the most important tools for improving knowledge about epilepsy and fighting discrimination. There are many educational initiatives worldwide, but they are often known only at a local level. Studies on epilepsy educational programs are rare and therefore published to a limited extent. The newly established International Bureau for Epilepsy (IBE) Education Commission enforces the exchange of educational activities and best practices, discussing education content and topics, target groups, and their educational needs, timing, tutors, and funding. A brief review of examples of all continents will be given. The needs for studies and for more exchange and closer cooperation will be addressed with proposals for further actions.
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Affiliation(s)
- Patricia Braga
- Neurological Institute, Facultad de Medicina, Universidad de la República, Uruguay
| | - Janet Mifsud
- Dep. of Clinical Pharmacology and Therapeutics, Univ. of Malta Msida, Malta
| | | | - Marina Clarke
- National Office Epilepsy, IBE Chapter, Cape Town, South Africa
| | - Arlette Honein
- AVANCE - School and Association for children with epilepsy and special needs, Lebanon
| | - Avirmed Tovuudorj
- Dep. of Neurology, Mongolian National University of Medical Sciences, Mongolia
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Shegog R, Braverman L, Hixson JD. Digital and technological opportunities in epilepsy: Toward a digital ecosystem for enhanced epilepsy management. Epilepsy Behav 2020; 102:106663. [PMID: 31778878 DOI: 10.1016/j.yebeh.2019.106663] [Citation(s) in RCA: 16] [Impact Index Per Article: 3.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/23/2019] [Revised: 10/29/2019] [Accepted: 10/30/2019] [Indexed: 01/01/2023]
Abstract
This commentary details the implications of a growing body of literature supporting several categories of supportive digital tools for the self-management of epilepsy. Although many prior review articles have focused on specific forms of digital epilepsy solutions, we propose the concept of an integrated self-management digital ecosystem. This would include categories of tools including self-management education programs, electronic diaries for self-monitoring, and automated wearables for seizure detection. Within these categories, individual interventions have been studied and made available to patients for years, but the evolution of a digital ecosystem promises the potential to integrate these tools in a manner that can meaningfully benefit patients' health. This commentary presents a discussion of the possible concerns that are preventing more widespread adoption of these digital health resources. Barriers are identified at multiple positions of the healthcare system, including the individual, the organizational, the community, and the policy levels.
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Affiliation(s)
- Ross Shegog
- University of Texas School of Public Health, 7000 Fannin, Suite 2668, Houston, TX 77030, United States of America
| | | | - John D Hixson
- University of California San Francisco and the San Francisco VA Medical Center, 4150 Clement Street, 127E, San Francisco, CA 94121, United States of America.
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Khalid Z, Momotaz H, Briggs F, Cassidy KA, Chaytor NS, Fraser RT, Janevic MR, Jobst B, Johnson EK, Scal P, Spruill TM, Wilson BK, Sajatovic M. Depressive Symptoms in Older versus Younger People with Epilepsy: Findings from an Integrated Epilepsy Self-Management Clinical Research Dataset. J Multidiscip Healthc 2019; 12:981-988. [PMID: 31839708 PMCID: PMC6904884 DOI: 10.2147/jmdh.s227184] [Citation(s) in RCA: 5] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/14/2019] [Accepted: 11/01/2019] [Indexed: 12/04/2022] Open
Abstract
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.
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Affiliation(s)
- Zaira Khalid
- Department of Psychiatry, Case Western Reserve University School of Medicine, University Hospitals Cleveland Medical Center , Cleveland, OH, USA
| | - Hasina Momotaz
- Department of Neurology, Case Western Reserve University School of Medicine, Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, OH, USA
| | - Farren Briggs
- Department of Population Health and Quantitative Science, School of Medicine, Case Western Reserve University, Cleveland, OH, USA
| | - Kristin A Cassidy
- Department of Psychiatry, Case Western Reserve University School of Medicine, University Hospitals Cleveland Medical Center , Cleveland, OH, USA.,Department of Neurology, Case Western Reserve University School of Medicine, Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, OH, USA
| | - Naomi S Chaytor
- Department of Medical Education and Clinical Sciences, Elson S. Floyd College of Medicine, Washington State University, Spokane, WA, USA
| | - Robert T Fraser
- Department of Rehabilitation Medicine, University of Washington, Seattle, WA, USA
| | - Mary R Janevic
- Center for Managing Chronic Disease, University of Michigan School of Public Health, Ann Arbor, MI, USA
| | - Barbara Jobst
- Department of Neurology, Geisel School of Medicine at Dartmouth, Dartmouth College, Lebanon, NH, USA
| | - Erica K Johnson
- Health Promotion Research Center, University of Washington, Seattle, WA, USA
| | - Peter Scal
- Department of Pediatrics and Adolescent Health, University of Minnesota, Minneapolis, MN, USA
| | - Tanya M Spruill
- Department of Population Health, NYU School of Medicine, New York, NY, USA
| | - Betsy K Wilson
- Department of Neurology, Case Western Reserve University School of Medicine, Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, OH, USA
| | - Martha Sajatovic
- Department of Psychiatry, Case Western Reserve University School of Medicine, University Hospitals Cleveland Medical Center , Cleveland, OH, USA.,Department of Neurology, Case Western Reserve University School of Medicine, Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, OH, USA
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Kobau R, Manderscheid R, Owens S, LaFrance WC, Sajatovic M. Bridging the divide between epilepsy and mental health to drive solutions. Epilepsy Behav 2019; 101:106576. [PMID: 31706920 PMCID: PMC8466722 DOI: 10.1016/j.yebeh.2019.106576] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/14/2019] [Accepted: 09/16/2019] [Indexed: 12/19/2022]
Abstract
Since its establishment in 2000, Epilepsy & Behavior has published more than 1000 papers on mental health issues among people with epilepsy, including about 200 reviews. These studies on prevalence, treatment, and guidance for future research are important contributions to the field, and they offer great promise. Yet these papers and the multitude published in other journals over the years have failed to result in systematic, scaled changes in how the epilepsy field in the United States addresses mental health issues. The mental health assessment and management gap is especially notable given decades-old, as well as more recent, recommendations from national initiatives on epilepsy, consensus statements, and other expert appeals to reduce psychiatric burden. Selected or comprehensive elements of emerging models and latest approaches from behavioral health (e.g., peer support) and public health (e.g., community-clinical linkages) highlight current opportunities to engage multiple community partners and sectors to bridge the epilepsy and behavioral health fields to implement solutions for improved mental healthcare for people with epilepsy. In honor of the 20th anniversary of Epilepsy & Behavior and its contribution to the literature and the field, we seek to build public health roadmaps to bridge the epilepsy and behavioral health divide-with new epilepsy partners who can expand community-based partnerships that may help facilitate systematic changes to close mental health treatment gaps. Special Issue: Epilepsy & Behavior's 20th Anniversary.
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Affiliation(s)
- Rosemarie Kobau
- Epilepsy Program, Division of Population Health, National Center for Chronic Disease Prevention and Health Promotion, CDC, Mail Stop MS107-6, 4770 Buford Hwy, 30341, GA, United States.
| | - Ron Manderscheid
- National Association of County and Behavioral Health and Developmental Disability Directors and the National Association for Rural Mental Health, United States
| | - Steven Owens
- Epilepsy Foundation, 8301 Professional Place West, Suite 200, Landover, MD 20785, United States
| | - W Curt LaFrance
- Rhode Island Hospital, Brown University, Departments of Psychiatry and Neurology, 593 Eddy Street, Providence, RI 02903, United States
| | - Martha Sajatovic
- Case Western Reserve University School of Medicine, 10900 Euclid Avenue, Cleveland, OH 44016, United States
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Sajatovic M, Eyler LT, Rej S, Almeida OP, Blumberg HP, Forester BP, Forlenza OV, Gildengers A, Mulsant BH, Strejilevich S, Tsai S, Vieta E, Young RC, Dols A. The Global Aging & Geriatric Experiments in Bipolar Disorder Database (GAGE-BD) project: Understanding older-age bipolar disorder by combining multiple datasets. Bipolar Disord 2019; 21:642-649. [PMID: 31081573 DOI: 10.1111/bdi.12795] [Citation(s) in RCA: 24] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/01/2022]
Abstract
OBJECTIVE There is a dearth of research about the aging process among individuals with bipolar disorder (BD). One potential strategy to overcome the challenge of interpreting findings from existing limited older-age bipolar disorder (OABD) research studies is to pool or integrate data, taking advantage of potential overlap or similarities in assessment methods and harmonizing or cross-walking measurements where different measurement tools are used to evaluate overlapping construct domains. This report describes the methods and initial start-up activities of a first-ever initiative to create an integrated OABD-focused database, the Global Aging & Geriatric Experiments in Bipolar Disorder Database (GAGE-BD) project. METHODS Building on preliminary work conducted by members of the International Society for Bipolar Disorders OABD taskforce, the GAGE-BD project will be operationalized in four stages intended to ready the dataset for hypothesis-driven analyses, establish a consortium of investigators to guide exploration, and set the stage for prospective investigation using a common dataset that will facilitate a high degree of generalizability. RESULTS Initial efforts in GAGE-BD have brought together 14 international investigators representing a broad geographic distribution and data on over 1,000 OABD. Start-up efforts include communication and guidance on meeting regulatory requirements, establishing a Steering Committee to guide an incremental analysis strategy, and learning from existing multisite data collaborations and other support resources. DISCUSSION The GAGE-BD project aims to advance understanding of associations between age, BD symptoms, medical burden, cognition and functioning across the life span and set the stage for future prospective research that can advance the understanding of OABD.
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Affiliation(s)
- Martha Sajatovic
- Case Western Reserve University School of Medicine, University Hospitals Case Medical Center, Cleveland, Ohio
| | - Lisa T Eyler
- Department of Psychiatry, University of California San Diego, San Diego, California.,Desert-Pacific Mental Illness Research Education and Clinical Center, VA San Diego Healthcare System, San Diego, California
| | - Soham Rej
- Lady Davis Insitute, McGill University, Montreal, Canada
| | | | | | - Brent P Forester
- McLean Hospital, Belmont, Massachusetts.,Harvard Medical School, Boston, MA
| | - Orestes V Forlenza
- Laboratory of Neuroscience (LIM-27), Departamento e Instituto de Psiquiatria, Hospital das Clinicas HCFMUSP, Faculdade de Medicina da Universidade de São Paulo, São Paulo, SP, Brazil
| | - Ariel Gildengers
- Ariel Gildengers, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania
| | - Benoit H Mulsant
- Department of Psychiatry, Center for Addiction & Mental Health, University of Toronto, Toronto, Canada
| | - Sergio Strejilevich
- AREA, Assistance and Research in Affective Disorders, Buenos Aires, Argentina
| | - Shangying Tsai
- Department of Psychiatry, School of Medicine, College of Medicine, Taipei Medical University, Taipei, Taiwan
| | - Eduard Vieta
- Hospital Clinic, University of Barcelona, IDIBAPS, CIBERSAM, Barcelona, Spain
| | - Robert C Young
- Weill Cornell Medicine and New York-Presbyterian Hospital, White Plains, New York
| | - Annemiek Dols
- GGZ inGeest, Amsterdam UMC, location VU Medical Center, Amsterdam Neuroscience, Amsterdam Public Health Research Institute, Amsterdam, the Netherlands
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Sajatovic M, Johnson EK, Fraser RT, Cassidy KA, Liu H, Pandey DK, Quarells RC, Scal P, Schmidt S, Shegog R, Spruill TM, Janevic MR, Tatsuoka C, Jobst BC. Self-management for adults with epilepsy: Aggregate Managing Epilepsy Well Network findings on depressive symptoms. Epilepsia 2019; 60:1921-1931. [PMID: 31486072 DOI: 10.1111/epi.16322] [Citation(s) in RCA: 10] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/07/2019] [Revised: 07/05/2019] [Accepted: 07/05/2019] [Indexed: 02/01/2023]
Abstract
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.
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Affiliation(s)
- Martha Sajatovic
- Department of Psychiatry, University Hospitals Cleveland Medical Center, Cleveland, Ohio.,Department of Neurology, University Hospitals Cleveland Medical Center, Cleveland, Ohio.,Case Western Reserve University School of Medicine, Cleveland, Ohio.,Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, Ohio
| | - Erica K Johnson
- Health Promotion Research Center, University of Washington, Seattle, Washington
| | - Robert T Fraser
- Department of Rehabilitation Medicine, University of Washington, Seattle, Washington
| | - Kristin A Cassidy
- Department of Psychiatry, University Hospitals Cleveland Medical Center, Cleveland, Ohio.,Department of Neurology, University Hospitals Cleveland Medical Center, Cleveland, Ohio.,Case Western Reserve University School of Medicine, Cleveland, Ohio.,Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, Ohio
| | - Hongyan Liu
- Department of Neurology, University Hospitals Cleveland Medical Center, Cleveland, Ohio.,Case Western Reserve University School of Medicine, Cleveland, Ohio.,Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, Ohio
| | - Dilip K Pandey
- Department of Neurology and Rehabilitation, University of Illinois College of Medicine at Chicago, Chicago, Illinois
| | - Rakale C Quarells
- Department of Community Health and Preventive Medicine, Morehouse School of Medicine, Atlanta, Georgia
| | - Peter Scal
- Department of Pediatrics and Adolescent Health, University of Minnesota, Minneapolis, Minnesota
| | - Samantha Schmidt
- Department of Neurology, Geisel School of Medicine at Dartmouth, Dartmouth College, Lebanon, New Hampshire
| | - Ross Shegog
- University of Texas Health Science Center at Houston School of Public Health, Houston, Texas
| | - Tanya M Spruill
- Department of Population Health, New York University School of Medicine, New York, New York
| | - Mary R Janevic
- Center for Managing Chronic Disease, University of Michigan, Ann Arbor, Michigan
| | - Curtis Tatsuoka
- Department of Neurology, University Hospitals Cleveland Medical Center, Cleveland, Ohio.,Case Western Reserve University School of Medicine, Cleveland, Ohio.,Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, Ohio
| | - Barbara C Jobst
- Department of Neurology, Geisel School of Medicine at Dartmouth, Dartmouth College, Lebanon, New Hampshire
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Pandey DK, Levy J, Serafini A, Habibi M, Song W, Shafer PO, Loeb JA. Self-management skills and behaviors, self-efficacy, and quality of life in people with epilepsy from underserved populations. Epilepsy Behav 2019; 98:258-265. [PMID: 31398690 DOI: 10.1016/j.yebeh.2019.07.042] [Citation(s) in RCA: 17] [Impact Index Per Article: 2.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/30/2019] [Revised: 07/10/2019] [Accepted: 07/14/2019] [Indexed: 02/04/2023]
Abstract
PURPOSE People with epilepsy (PWE) from underserved populations face significant barriers to epilepsy management and therefore may lack knowledge about epilepsy and self-management (SM) of epilepsy. This paper evaluates SM practices, self-efficacy, outcome expectancy, quality of life, and personal impact of epilepsy in PWE from underserved populations as compared with all PWE. METHODS Recruitment for the Managing Epilepsy Well (MEW) Network PAUSE to Learn Your Epilepsy study occurred from October 2015 to March 2019. Participants were assessed at baseline; after SM education intervention; and 6-, 9-, and 15-month postbaseline assessment. Baseline data from 112 PWE were analyzed for this report. RESULTS Study population was diverse: 63% were women, 47.3% were non-Hispanic black, 24.1% were Hispanic, and 57.4% had public healthcare coverage. Participants on average had epilepsy for 14 years, and 49.1% reported at least one seizure within the past month, but only 27% reported having used a seizure diary or calendar for seizure tracking. Self-management practices & behaviors were significantly lower among PWE from underserved populations than all PWE, though self-efficacy among PWE from underserved populations was significantly higher. CONCLUSION This study identifies the unique epilepsy SM needs of PWE from underserved populations. We discuss the need for a personalized approach for developing SM skills and behaviors among these PWE.
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Affiliation(s)
- Dilip K Pandey
- Department of Neurology and Rehabilitation, University of Illinois College of Medicine, University of Illinois at Chicago, 912 S. Wood St, Chicago, IL 60612, USA.
| | - Jessica Levy
- Department of Neurology and Rehabilitation, University of Illinois College of Medicine, University of Illinois at Chicago, 912 S. Wood St, Chicago, IL 60612, USA
| | - Anna Serafini
- Department of Neurology and Rehabilitation, University of Illinois College of Medicine, University of Illinois at Chicago, 912 S. Wood St, Chicago, IL 60612, USA
| | - Mitra Habibi
- Department of Pharmacy Practice, College of Pharmacy, University of Illinois at Chicago, 833 S. Wood St, Chicago, IL 60612, USA
| | - Woojin Song
- Department of Neurology and Rehabilitation, University of Illinois College of Medicine, University of Illinois at Chicago, 912 S. Wood St, Chicago, IL 60612, USA
| | - Patricia O Shafer
- Epilepsy Foundation, 8301 Professional Place West, Landover, MD, USA
| | - Jeffrey A Loeb
- Department of Neurology and Rehabilitation, University of Illinois College of Medicine, University of Illinois at Chicago, 912 S. Wood St, Chicago, IL 60612, USA
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Engel ML, Barnes AJ, Henry TR, Garwick AE, Scal PB. Medical Risk and Resilience in Adolescents and Young Adults With Epilepsy: The Role of Self-Management Self-Efficacy. J Pediatr Psychol 2019; 44:1224-1233. [DOI: 10.1093/jpepsy/jsz063] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/08/2019] [Revised: 07/03/2019] [Accepted: 07/07/2019] [Indexed: 11/14/2022] Open
Abstract
Abstract
Objective
Medical factors that put adolescents and young adults (AYA) with epilepsy at risk for poor health-related quality of life (HRQOL) are well-established. Less known is whether medical risk is associated with decreases in global psychological well-being and how self-management self-efficacy might contribute to resilience. The current study seeks to (a) examine the relationship between medical risk and both HRQOL and psychological well-being in AYA with epilepsy and (b) investigate the potential moderating role of self-management self-efficacy.
Methods
A sample of 180 AYA with epilepsy, aged 13–24 years, was recruited from clinic and community settings and completed questionnaires. A medical risk gradient composed of seizure frequency, antiepileptic drugs, and other health problems was created. HRQOL, psychological well-being, and self-management self-efficacy were assessed.
Results
Medical risk was negatively associated with HRQOL, such that youth with greater risk scores reported lower HRQOL (r = −0.35, p < .01). However, there was no significant relationship between medical risk and psychological well-being (r = −0.08, p = .31). Self-efficacy was positively correlated with HRQOL and well-being (r = 0.50, p < .01; r = 0.48, p < .01). A moderation effect was detected, such that the positive effect of self-efficacy on HRQOL differed across medical risk levels.
Implications
Cultivating psychological strengths, as opposed to solely addressing medical problems, may be a promising intervention target when treating AYA with epilepsy, including those navigating healthcare transitions. Self-efficacy predicted HRQOL at most levels of risk, suggesting an important modifiable intrinsic factor that may promote resilience.
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Affiliation(s)
| | | | | | | | - Peter B Scal
- Department of Pediatrics, University of Minnesota
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Jobst BC. Progress in Chronic Disease: Self-management for Patients With Epilepsy. Ann Intern Med 2019; 171:137-138. [PMID: 31261384 DOI: 10.7326/m19-1483] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.2] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/22/2022] Open
Affiliation(s)
- Barbara C Jobst
- Dartmouth-Hitchcock Medical Center and Geisel School of Medicine at Dartmouth, Lebanon, New Hampshire (B.C.J.)
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Sajatovic M, Colon-Zimmermann K, Kahriman M, Fuentes-Casiano E, Burant C, Aebi ME, Cassidy KA, Lhatoo S, Einstadter D, Chen P. One-year follow-up of a remotely delivered epilepsy self-management program in high-risk people with epilepsy. Epilepsy Behav 2019; 96:237-243. [PMID: 31126825 PMCID: PMC7370541 DOI: 10.1016/j.yebeh.2019.04.034] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/06/2019] [Revised: 04/18/2019] [Accepted: 04/19/2019] [Indexed: 02/02/2023]
Abstract
OBJECTIVE "Self-management for people with epilepsy and a history of negative health events" (SMART) is a novel group-format epilepsy self-management intervention demonstrated to reduce negative health events (NHEs) such as accidents, emergency department visits, and seizures in adults with epilepsy in a 6-month prospective randomized controlled trial (RCT); SMART also reduced depressive symptoms and improved health functioning and quality of life. This report describes the longer-term (12-month) post-efficacy RCT outcomes in adults with epilepsy who received SMART. METHODS After completing a 6-month, prospective RCT that demonstrated efficacy of SMART vs 6-month waitlist control (WL), adults ≥18 years of age with epilepsy were followed for an additional 12 months. Individuals originally randomized to WL received the 8-week SMART intervention immediately following the conclusion of the RCT. For this long-term extension analysis, assessments were conducted at 24 weeks (the 6-month primary outcome time-point of the efficacy RCT), at 32 weeks for individuals originally randomized to WL, and at 48 weeks and 72 weeks for all individuals. Outcomes assessed included past 6-month NHE counts, depressive symptoms assessed with the 9-item Patient Health Questionnaire (PHQ-9) and Montgomery-Asberg Depression Rating Scale (MADRS), and quality of life assessed with the 10-item Quality of Life in Epilepsy (QOLIE-10). RESULTS At the beginning of this long-term observational period (24-week follow-up time point for the original RCT), there were 50 individuals in the group originally randomized to SMART and 52 originally randomized to WL. Mean age was 41.4 years, 70% women (N = 71), 64% (N = 65) African-American, and 8% Hispanic (N = 8). Study attrition from week 24 to week 72 was 8% in the arm originally randomized to SMART and 17% in the arm originally randomized to WL. During the 12-month observation period (24 weeks to 72 weeks), there were a total of 44 serious adverse events and 4 deaths, none related to study participation. There was no significant change in total past 6-month NHE counts in the group originally randomized to SMART, although the group had significantly reduced 6-month seizure counts. The group originally randomized to WL, who received SMART during this observational period, had a reduction in total NHE counts. The group originally randomized to SMART had relatively stable levels on other outcome variables except for a trend for improved MADRS (p = 0.08). In the group originally randomized to WL, there were significant improvements in PHQ-9 (p = 0.01), MADRS (p ≤ 0.01), and QOLIE-10 (p = 0.004). CONCLUSIONS This post-RCT extension study suggests that adults with epilepsy who participate in the SMART intervention sustain clinical effects at 1-year follow-up and may have incremental improvements in seizure frequency and mood. Future research needs to identify opportunities for scale-up and outreach to other high-risk groups with epilepsy.
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Affiliation(s)
- Martha Sajatovic
- Department of Neurology, Neurological & Behavioral Outcomes Center, Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center, Cleveland, OH, USA; Department of Psychiatry, Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center, Cleveland, OH, USA.
| | - Kari Colon-Zimmermann
- Department of Neurology, Neurological & Behavioral Outcomes Center, Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center, Cleveland, OH, USA; Department of Psychiatry, Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center, Cleveland, OH, USA
| | - Mustafa Kahriman
- Department of Neurology, Louis Stokes Cleveland VAMC, Case Western Reserve University School of Medicine, Cleveland, OH, USA
| | - Edna Fuentes-Casiano
- Department of Psychiatry, Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center, Cleveland, OH, USA
| | - Christopher Burant
- Case Western Reserve University School of Nursing, Louis Stokes Cleveland VAMC, Cleveland, OH, USA
| | - Michelle E Aebi
- Department of Psychiatry, Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center, Cleveland, OH, USA
| | - Kristin A Cassidy
- Department of Neurology, Neurological & Behavioral Outcomes Center, Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center, Cleveland, OH, USA; Department of Psychiatry, Case Western Reserve University School of Medicine and University Hospitals Cleveland Medical Center, Cleveland, OH, USA
| | - Samden Lhatoo
- Department of Neurology, University of Texas Houston, Houston, TX, USA
| | - Douglas Einstadter
- Case Western Reserve University and Center for Health Care Research and Policy, MetroHealth Medical Center, Cleveland, OH, USA
| | - Peijun Chen
- Department of Psychiatry, Louis Stokes Cleveland VAMC, Case Western Reserve University School of Medicine, Cleveland, OH, USA
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Kobau R, Sapkota S, Zack MM. Serious psychological distress among adults with active epilepsy in all racial/ethnic groups and among adults with inactive epilepsy in non-Hispanic whites is significantly higher than among adults without epilepsy-U.S. National Health Interview Survey, 2010, 2013, 2015, and 2017. Epilepsy Behav 2019; 95:192-194. [PMID: 30898515 PMCID: PMC8483585 DOI: 10.1016/j.yebeh.2019.01.043] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.2] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/29/2019] [Accepted: 01/30/2019] [Indexed: 11/19/2022]
Abstract
Serious psychological distress (SPD) includes mental health problems severe enough to cause moderate-to-serious impairment in daily activities and to require treatment. Serious psychological distress is based on answers to six survey questions from the Kessler-6 scale used internationally in public health surveillance systems to assess recent feelings of sadness, restlessness, hopelessness, nervousness, worthlessness, and the sense that everything is an effort. We combined nationally representative samples in the National Health Interview Survey (NHIS) from 2010 (N = 27,157), 2013 (N = 34,557), 2015 (N = 33,672), and 2017 (N = 26,742). We used a validated surveillance case definition to classify adults as having epilepsy if they reported a history of doctor-diagnosed epilepsy or seizure disorder (n = 2251). We further classified those with epilepsy as having active epilepsy (n = 1380) if they reported either taking epilepsy medications or having at least one seizure in the past 12 months or as having inactive epilepsy (n = 871) if they did not take epilepsy medication and had not had any seizures in the past 12 months. We used an NHIS recoded variable that classifies adults by Hispanic origin and race. Following age adjustment, among adults with active epilepsy, SPD prevalence was 13.7% among non-Hispanic white adults, 11.2% among non-Hispanic black adults, 20.7% among Hispanic adults, and 17.5% among non-Hispanic other adults. Compared with adults without epilepsy, adults with active epilepsy were 4.8 times more likely, and adults with inactive epilepsy 2.6 times more likely, to report SPD. In each racial/ethnic group, SPD among adults with active epilepsy is significantly higher than in adults without epilepsy. Among adults with active epilepsy, SPD prevalence did not differ by racial/ethnic groups. However, only among non-Hispanic white adults with inactive epilepsy did SPD prevalence significantly exceed that among non-Hispanic white adults without epilepsy. Epilepsy stakeholders can use these estimates to target culturally appropriate community-based and clinic-based interventions to reduce the high burden of psychological distress among adults with active epilepsy and inactive epilepsy.
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Affiliation(s)
- Rosemarie Kobau
- Epilepsy Program, Division of Population Health, National Center for Chronic Disease Prevention and Health Promotion, CDC, Mail Stop F-78, 4770 Buford Hwy, 30341, GA, United States.
| | - Sanjeeb Sapkota
- G2S Corporation, Epilepsy Program, Division of Population Health, National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention (CDC), Mail Stop F-78, 4770 Buford Hwy, 30341, GA, United States
| | - Matthew M Zack
- Epilepsy Program, Division of Population Health, National Center for Chronic Disease Prevention and Health Promotion, CDC, Mail Stop F-78, 4770 Buford Hwy, 30341, GA, United States
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Jobst BC, Ben-Menachem E, Chapman KE, Fu A, Goldman A, Hirsch LJ, Jehi LE, Kossoff EH, Plueger M, Rho JM, Schevon CA, Shinnar S, Sperling MR, Simeone TA, Wagner JL, Lado F. Highlights From the Annual Meeting of the American Epilepsy Society 2018. Epilepsy Curr 2019; 19:152-158. [PMID: 31050308 PMCID: PMC6610384 DOI: 10.1177/1535759719844486] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/16/2022] Open
Abstract
The American Epilepsy Society Meeting in New Orleans attracted more than 5900 attendees. There was a lively exchange of new science, innovation, education, clinical practice, and many other items related to epilepsy. Educational symposia were a major part of the meeting and explored varying topics of interest for all types of epilepsy professionals. This article reviews highlights of the meeting presented in major symposia. Topics ranged from how to treat varying aspects of epilepsy as a consultant in the hospital to finding the scientific underpinning of the interaction between sleep and epilepsy. Pros and cons of novel antiseizure medications, dietary, and stimulation treatments were discussed. Epilepsy may impair memory and we need to learn what is the pathophysiologic relationship. Febrile status epilepticus may have severe consequences for a later life with seizures. Epilepsy professionals should be very well aware of the ethical implications of devasting seizures and their associated disability. These are just a few select topics of the many that we need to study further to archive the final goal to improve the lives of patients with epilepsy.
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McGee RE, Sajatovic M, Quarells RC, Johnson EK, Liu H, Spruill TM, Fraser RT, Janevic M, Escoffery C, Thompson NJ. Depression and quality of life among African Americans with epilepsy: Findings from the Managing Epilepsy Well (MEW) Network integrated database. Epilepsy Behav 2019; 94:301-306. [PMID: 30975571 PMCID: PMC7430521 DOI: 10.1016/j.yebeh.2019.02.026] [Citation(s) in RCA: 12] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/29/2019] [Revised: 02/27/2019] [Accepted: 02/27/2019] [Indexed: 11/18/2022]
Abstract
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.
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Affiliation(s)
- Robin E McGee
- Emory University, Rollins School of Public Health, 1518 Clifton Road, Atlanta, GA, 30322, United States of America.
| | - Martha Sajatovic
- Case Western Reserve University, University Hospitals Case Medical Center, 10524 Euclid Avenue, Cleveland, OH 44106, United States of America.
| | - Rakale C Quarells
- Morehouse School of Medicine, 720 Westview Dr. SW, Atlanta, GA 30310, United States of America.
| | - Erika K Johnson
- University of Washington, Harborview Medical Center, 325 Ninth Ave, Seattle, WA 98104, United States of America.
| | - Hongyan Liu
- Case Western Reserve University, University Hospitals Case Medical Center, 10524 Euclid Avenue, Cleveland, OH 44106, United States of America
| | - Tanya M Spruill
- New York University School of Medicine, 550 First Avenue, New York, NY 10016, United States of America.
| | - Robert T Fraser
- University of Washington, Harborview Medical Center, 325 Ninth Ave, Seattle, WA 98104, United States of America.
| | - Mary Janevic
- University of Michigan, 1415 Washington Heights, Ann Arbor, MI, United States of America.
| | - Cam Escoffery
- Emory University, Rollins School of Public Health, 1518 Clifton Road, Atlanta, GA, 30322, United States of America.
| | - Nancy J Thompson
- Emory University, Rollins School of Public Health, 1518 Clifton Road, Atlanta, GA, 30322, United States of America.
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Sajatovic M, Needham K, Colón-Zimmermann K, Richter N, Liu H, Garrity J, Ryan ER, Storer N, Harper V. The Community-targeted Self-management of Epilepsy and Mental Illness (C-TIME) initiative: A research, community, and healthcare administration partnership to reduce epilepsy burden. Epilepsy Behav 2018; 89:175-180. [PMID: 30385215 PMCID: PMC7484726 DOI: 10.1016/j.yebeh.2018.10.004] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 08/01/2018] [Revised: 10/02/2018] [Accepted: 10/03/2018] [Indexed: 01/22/2023]
Abstract
AIMS Comorbid mental health conditions (MHCs) such as depression and anxiety are common in people with epilepsy. Targeted Self-Management for Epilepsy and Mental Illness (TIME) is a behavioral program that targets mood symptoms in adults with epilepsy and comorbid MHCs. Building upon positive findings of a randomized controlled study to establish the efficacy of TIME, the Community-TIME (C-TIME) initiative assessed the implementation feasibility and pre-/post-outcomes of this new evidence-based epilepsy self-management intervention in a community setting and in collaboration with key stakeholders. METHODS The C-TIME program is a group-format curriculum-based intervention delivered in ten 60-90 sessions over the course of 12 weeks. The C-TIME initiative used research staff to guide intervention performance evaluation, staff of a regional epilepsy advocacy agency to assist with community engagement and a county mental health services agency to support the transition from science to service. Process evaluations included outreach and engagement efforts needed to reach people with epilepsy and MHCs, the barriers and facilitators to roll out, and the participants' retention and satisfaction. The primary intervention participant outcome was depressive symptom severity at 4-month follow-up. RESULTS Referrals came from a variety of sources and approximately 1 in 3 referrals resulted in an enrollment. Thirty individuals were enrolled in 3 "cohorts" of 10. The most common reason for not being enrolled postscreening was that individuals did not show up for the baseline evaluation. Mean age of participants was 49.1 (12.8) years, 50% (N = 15) female, 55.2% (N = 16) white, 34.5% (N = 10) African-American. With respect to participation, 2/3 of the enrolled sample attended at least 7 out of the maximum 10 C-TIME sessions. Mean number of C-TIME sessions attended was 6.9 (4.1). Five participants (17%) had family members attend the C-TIME sessions, although family members were encouraged to play a supportive rather than primary role. Four-month follow-up outcome evaluation was available for 66% of the enrolled group. There was a significant reduction in depression severity, and patient satisfaction was over 90%. CONCLUSIONS The C-TIME program can be successfully implemented in the community and is associated with improved outcomes in adults with epilepsy and comorbid MHCs. Continued and broader scale-up of C-TIME and similar approaches could reach larger groups of adults with epilepsy and improve the health of our communities.
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Affiliation(s)
- Martha Sajatovic
- Department of Psychiatry and of Neurology, Case Western Reserve University School of Medicine, Cleveland, OH, USA; Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, OH, USA.
| | | | - Kari Colón-Zimmermann
- Department of Psychiatry and of Neurology, Case Western Reserve University School of Medicine, Cleveland, OH, USA,Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, OH, USA
| | | | - Hongyan Liu
- Department of Psychiatry and of Neurology, Case Western Reserve University School of Medicine, Cleveland, OH, USA,Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, OH, USA
| | - John Garrity
- Alcohol, Drug Addiction and Mental Health Services Board of Cuyahoga County, Cleveland, OH USA*
| | - Eleanor R. Ryan
- Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, OH, USA
| | - Norma Storer
- Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, OH, USA
| | - Valeria Harper
- Alcohol, Drug Addiction and Mental Health Services Board of Cuyahoga County, Cleveland, OH USA*
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Friedman D, Spruill TM, Liu H, Tatsuoka C, Stoll S, Jobst BC, Fraser RT, Johnson EK, Chaytor N, Sajatovic M. Depressive symptoms and suicidality among individuals with epilepsy enrolled in self-management studies: Results from the US Centers for Disease Control and Prevention Managing Epilepsy Well (MEW) Network. Epilepsy Behav 2018; 87:235-240. [PMID: 30115600 DOI: 10.1016/j.yebeh.2018.06.024] [Citation(s) in RCA: 16] [Impact Index Per Article: 2.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/30/2018] [Revised: 05/30/2018] [Accepted: 06/15/2018] [Indexed: 11/20/2022]
Abstract
Depression is a common comorbidity in people with epilepsy (PWE) that negatively affects self-management and a variety of health outcomes. Suicidal ideation is also more common among PWE than the general population. We examined correlates of depressive symptoms and suicidal ideation in adults using pooled data from epilepsy self-management studies conducted by sites in the Centers for Disease Control and Prevention (CDC) Research Center's Managing Epilepsy Well (MEW) Network that assessed depression severity with the 9-item Patient Health Questionnaire (PHQ-9). Of the 770 subjects in the analysis (mean age 42.4 ± 13.0 years), the mean total PHQ-9 score was 9.4 ± 6.6 and 334 subjects (43.4%) had moderate to severe depressive symptoms (PHQ-9 ≥ 10). Only ongoing seizures and low education were associated with moderate-severe depressive symptoms in multiple logistic regression analysis. Suicidality (PHQ-9, item 9 score ≥ 1) was endorsed by 155 subjects (20.1%). Only nonsuicidal depressive symptoms were associated with suicidality in multiple variable logistic regression analysis. We show in this large and regionally diverse dataset that both depression and suicidal ideation are common among PWE enrolled in self-management studies. Future studies are needed to examine whether suicidality exists independently of other depressive symptoms in some populations with epilepsy and investigate other correlates of suicidality that may inform screening practices.
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Affiliation(s)
- Daniel Friedman
- Department of Neurology, NYU School of Medicine, New York, NY, United States.
| | - Tanya M Spruill
- Department of Population Health, NYU School of Medicine, New York, NY, United States
| | - Hongyan Liu
- Department of Neurology, Case Western Reserve University School of Medicine, Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, OH, United States
| | - Curtis Tatsuoka
- Department of Neurology, Case Western Reserve University School of Medicine, Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, OH, United States
| | - Shelley Stoll
- Center for Managing Chronic Disease, University of Michigan, Ann Arbor, MI, United States
| | - Barbara C Jobst
- Department of Neurology, Geisel School of Medicine at Dartmouth, Dartmouth College, Lebanon, NH, United States
| | - Robert T Fraser
- School of Public Health, Univ. of Washington, Seattle, WA, United States
| | - Erica K Johnson
- School of Public Health, Univ. of Washington, Seattle, WA, United States
| | - Naomi Chaytor
- Department of Medical Education and Clinical Sciences, Elson S. Floyd College of Medicine, Washington State University, Spokane, WA, United States
| | - Martha Sajatovic
- Department of Neurology, Case Western Reserve University School of Medicine, Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, OH, United States; Departments of Psychiatry, School of Medicine, Case Western Reserve University, Cleveland, OH, United States
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Bautista RED, Persaud AS. Epilepsy wellness: The standard of care for the 21st century. Epilepsy Behav 2018; 87:241-242. [PMID: 30170896 DOI: 10.1016/j.yebeh.2018.07.026] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/27/2018] [Accepted: 07/30/2018] [Indexed: 10/28/2022]
Affiliation(s)
- Ramon Edmundo D Bautista
- Comprehensive Epilepsy Program, Department of Neurology, University of Florida Health Sciences Center/Jacksonville, United States of America.
| | - Amanda S Persaud
- Comprehensive Epilepsy Program, Department of Neurology, University of Florida Health Sciences Center/Jacksonville, United States of America
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Oppenheimer J, Leviton A, Chiujdea M, Antonetty A, Ojo OW, Garcia S, Weas S, Fleegler EW, Chan E, Loddenkemper T. Caring electronically for young outpatients who have epilepsy. Epilepsy Behav 2018; 87:226-232. [PMID: 30197227 DOI: 10.1016/j.yebeh.2018.06.018] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/13/2018] [Revised: 06/08/2018] [Accepted: 06/11/2018] [Indexed: 01/17/2023]
Abstract
PURPOSE The purpose of this study was to review electronic tools that might improve the delivery of epilepsy care, reduce medical care costs, and empower families to improve self-management capability. METHOD We reviewed the epilepsy-specific literature about self-management, electronic patient-reported or provider-reported outcomes, on-going remote surveillance, and alerting/warning systems. CONCLUSIONS The improved care delivery system that we envision includes self-management, electronic patient (or provider)-reported outcomes, on-going remote surveillance, and alerting/warning systems. This system and variants have the potential to reduce seizure burden through improved management, keep children out of the emergency department and hospital, and even reduce the number of outpatient visits.
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Affiliation(s)
- Julia Oppenheimer
- Division of Epilepsy and Clinical Neurophysiology, Department of Neurology, Boston Children's Hospital and Harvard Medical School, Boston, MA, USA
| | - Alan Leviton
- Division of Epilepsy and Clinical Neurophysiology, Department of Neurology, Boston Children's Hospital and Harvard Medical School, Boston, MA, USA.
| | - Madeline Chiujdea
- Division of Epilepsy and Clinical Neurophysiology, Department of Neurology, Boston Children's Hospital and Harvard Medical School, Boston, MA, USA
| | - Annalee Antonetty
- Division of Epilepsy and Clinical Neurophysiology, Department of Neurology, Boston Children's Hospital and Harvard Medical School, Boston, MA, USA
| | - Oluwafemi William Ojo
- Division of Epilepsy and Clinical Neurophysiology, Department of Neurology, Boston Children's Hospital and Harvard Medical School, Boston, MA, USA
| | - Stephanie Garcia
- Division of Epilepsy and Clinical Neurophysiology, Department of Neurology, Boston Children's Hospital and Harvard Medical School, Boston, MA, USA
| | - Sarah Weas
- Division of Developmental Medicine, Department of Medicine, Boston Children's Hospital and Harvard Medical School, Boston, MA, USA
| | - Eric W Fleegler
- Division of Emergency Medicine, Department of Medicine, Boston Children's Hospital and Harvard Medical School, Boston, MA, USA
| | - Eugenia Chan
- Division of Developmental Medicine, Department of Medicine, Boston Children's Hospital and Harvard Medical School, Boston, MA, USA
| | - Tobias Loddenkemper
- Division of Epilepsy and Clinical Neurophysiology, Department of Neurology, Boston Children's Hospital and Harvard Medical School, Boston, MA, USA
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Sajatovic M, Colon-Zimmermann K, Kahriman M, Fuentes-Casiano E, Liu H, Tatsuoka C, Cassidy KA, Lhatoo S, Einstadter D, Chen P. A 6-month prospective randomized controlled trial of remotely delivered group format epilepsy self-management versus waitlist control for high-risk people with epilepsy. Epilepsia 2018; 59:1684-1695. [PMID: 30098003 DOI: 10.1111/epi.14527] [Citation(s) in RCA: 46] [Impact Index Per Article: 6.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/27/2018] [Revised: 07/10/2018] [Accepted: 07/13/2018] [Indexed: 01/17/2023]
Abstract
OBJECTIVE Despite advances in care, many people with epilepsy have negative health events (NHEs) such as accidents, emergency department visits, and poor quality of life. "Self-management for people with epilepsy and a history of negative health events" (SMART) is a novel group format epilepsy self-management intervention. A community participatory approach informed the refinement of SMART, which was then tested in a 6-month randomized controlled trial of SMART (n = 60) versus waitlist control (WL, n = 60). METHODS Participants were adults aged ≥18 years with epilepsy and an NHE within the past 6 months (seizure, accident, self-harm attempt, emergency department visit, or hospitalization). Assessments were conducted at screening, baseline, 10 weeks, and 24 weeks (6 months). Primary outcome was 6-month change in total NHE count. Additional outcomes included depression on the nine-item Patient Health Questionnaire and Montgomery-Asberg Depression Rating Scale, quality of life on the 10-item Quality of Life in Epilepsy, functioning on the 36-item Short-Form Health Survey, and seizure severity on the Liverpool Seizure Severity Scale. RESULTS Mean age was 41.3 years (SD = 11.82), 69.9% were African American, 74.2% were unemployed, and 87.4% had an annual income < US$25 000; 57.5% had a seizure within 30 days of enrollment. Most NHEs were seizures. Six-month study attrition was 14.2% overall and similar between arms. Individuals randomized to SMART had greater reduction in total median NHEs from baseline to 6 months compared to WL (P = 0.04). SMART was also associated with improved nine-item Patient Health Questionnaire (P = 0.032), Montgomery-Asberg Depression Rating Scale (P = 0.002), 10-item Quality of Life in Epilepsy (P < 0.001), and 36-item Short-Form Health Survey (P = 0.015 physical health, P = 0.003 mental health) versus WL. There was no difference in seizure severity. SIGNIFICANCE SMART is associated with reduced health complications and improved mood, quality of life, and health functioning in high-risk people with epilepsy. Additional efforts are needed to investigate potential for scale-up.
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Affiliation(s)
- Martha Sajatovic
- Department of Neurology, Neurological & Behavioral Outcomes Center, Cleveland, Ohio.,Department of Psychiatry, Case Western Reserve University School of Medicine and University Hospitals Case Medical Center, Cleveland, Ohio
| | - Kari Colon-Zimmermann
- Department of Neurology, Neurological & Behavioral Outcomes Center, Cleveland, Ohio.,Department of Psychiatry, Case Western Reserve University School of Medicine and University Hospitals Case Medical Center, Cleveland, Ohio
| | - Mustafa Kahriman
- Department of Neurology, Lois Stokes Cleveland Veterans Affairs Medical Center, Case Western Reserve University School of Medicine, Cleveland, Ohio
| | - Edna Fuentes-Casiano
- Department of Psychiatry, Case Western Reserve University School of Medicine and University Hospitals Case Medical Center, Cleveland, Ohio
| | - Hongyan Liu
- Department of Neurology, Neurological & Behavioral Outcomes Center, Cleveland, Ohio
| | - Curtis Tatsuoka
- Department of Neurology, Neurological & Behavioral Outcomes Center, Cleveland, Ohio
| | - Kristin A Cassidy
- Department of Neurology, Neurological & Behavioral Outcomes Center, Cleveland, Ohio.,Department of Psychiatry, Case Western Reserve University School of Medicine and University Hospitals Case Medical Center, Cleveland, Ohio
| | - Samden Lhatoo
- Department of Neurology, University Hospitals Cleveland Medical Center, Case Western Reserve University School of Medicine, Cleveland, Ohio
| | - Douglas Einstadter
- MetroHealth Medical Center, Case Western Reserve University School of Medicine and Center for Health Care Research and Policy, Cleveland, Ohio
| | - Peijun Chen
- Department of Psychiatry, Lois Stokes Cleveland Veterans Affairs Medical Center, Case Western Reserve University School of Medicine, Cleveland, Ohio
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50
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Begley C, Shegog R, Liu H, Tatsuoka C, Spruill TM, Friedman D, Fraser RT, Johnson EK, Bamps YA, Sajatovic M. Correlates of epilepsy self-management in MEW Network participants: From the Centers for Disease Control and Prevention Managing Epilepsy Well Network. Epilepsy Behav 2018; 85:243-247. [PMID: 29853255 DOI: 10.1016/j.yebeh.2018.04.011] [Citation(s) in RCA: 12] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/06/2018] [Revised: 04/14/2018] [Accepted: 04/16/2018] [Indexed: 12/14/2022]
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.
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Affiliation(s)
- Charles Begley
- Department of Management, Policy, and Community Health, University of Texas School of Public Health, Houston, United States.
| | - Ross Shegog
- Department of Health Promotion and Behavioral Science, University of Texas School of Public Health, Houston, United States
| | - Hongyan Liu
- Department of Neurology, Case Western Reserve University School of Medicine, Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, OH, United States
| | - Curtis Tatsuoka
- Department of Neurology, Case Western Reserve University School of Medicine, Neurological and Behavioral Outcomes Center, University Hospitals Cleveland Medical Center, Cleveland, OH, United States
| | - Tanya M Spruill
- Department of Population Health, New York University School of Medicine, New York, NY, United States
| | - Daniel Friedman
- Department of Neurology, New York University School of Medicine, New York, NY, United States
| | - Robert T Fraser
- Department of Rehabilitation Medicine, University of Washington, Seattle, WA, United States
| | - Erica K Johnson
- Health Promotion Research Center, University of Washington, Seattle, WA, United States
| | - Yvan A Bamps
- Department of Neurosurgery, School of Medicine Emory University, United States
| | - Martha Sajatovic
- Department of Psychiatry & of Neurology, Case Western Reserve University School of Medicine, Neurological and Behavioral Outcomes Center University Hospitals Cleveland Medical Center, Cleveland, OH, United States
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