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1.
J Neurosci Nurs ; 56(4): 136-142, 2024 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-38976832

RESUMO

ABSTRACT: INTRODUCTION: Nurses have a central role in educating patients and families about treatment options and how to integrate them into action plans for neurologic conditions. In recent years, a growing number of intranasal formulations have become available as rescue therapy for neurologic conditions or symptoms including migraine, opioid overdose, and seizures. Rescue therapies do not replace maintenance medications or emergency care but are designed to enable rapid treatment of urgent or disabling conditions in community settings. Yet, discussion of rescue therapies for neurologic conditions remains limited in nursing literature. CONTENT: Intranasal formulations are specifically formulated for delivery and absorption in the nose and have several characteristics that are well suited as rescue therapies for neurologic conditions. Intranasal formulations include triptans for migraine, naloxone and nalmefene for opioid overdose, and benzodiazepines for seizure clusters in patients with epilepsy. Therapeutic attributes discussed here include ease of use in community settings by nonmedical professionals, relatively rapid onset of action, and favorable safety profile and patient experience. This information is critical for nurses to make informed decisions about rescue therapy options, incorporate these into plans of care, and educate patients, care partners, and other healthcare providers. CONCLUSION: Rescue therapies are increasingly important in the care of people with neurologic conditions. Various formulations are available and continue to evolve, offering easy and quick ways for nurses, patients, and nonmedical care partners to administer critical rescue medications. For nurses overseeing medication management, the attributes of intranasal rescue therapies should be considered in the context of providing patients with the right care at the right time.


Assuntos
Administração Intranasal , Doenças do Sistema Nervoso , Humanos , Analgésicos Opioides/efeitos adversos , Analgésicos Opioides/antagonistas & inibidores , Benzodiazepinas/administração & dosagem , Benzodiazepinas/uso terapêutico , Naloxona/administração & dosagem , Naloxona/uso terapêutico , Antagonistas de Entorpecentes/administração & dosagem , Antagonistas de Entorpecentes/uso terapêutico , Doenças do Sistema Nervoso/induzido quimicamente , Doenças do Sistema Nervoso/tratamento farmacológico , Triptaminas/uso terapêutico , Triptaminas/administração & dosagem
2.
Epilepsy Behav ; 140: 109114, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36780774

RESUMO

OBJECTIVES: Many children with epilepsy experience seizures at school. School nurses must have the clinical expertise to deliver high-quality, safe care for students with epilepsy. However, in some regions of the U.S. access to interactive, epilepsy evidence-based education programs is limited. The objective of this project was to assess the feasibility of adapting the Epilepsy Foundation's (EFs) school nurse education program to the ECHO model and evaluate its impact on school nurse knowledge and self-efficacy in managing epilepsy in students with seizures and program satisfaction. METHODS: The EFs educational program for school nurses was adapted to the ECHO model and delivered by a team of interdisciplinary epilepsy specialists via videoconferencing. Retrospective post-program surveys were administered at program completion. Data from 32 participants with complete post-program surveys were used for the analysis of knowledge and confidence. Descriptive statistics and the sign test were conducted. RESULTS: Participants were 166 school nurses from 13 states. The majority had > 15 years of school nurse experience and served schools in suburban or rural areas. Improvements in knowledge and confidence were reported on most survey items. The highest improvements in self-reported knowledge and confidence were in psychosocial aspects of care, comorbidities, and recognition of nonepileptic events. Program satisfaction was rated as high by over 90% of participants. CONCLUSIONS: Telementoring using the ECHO methodology is a feasible modality to educate and link epilepsy specialists and providers with school nurses nationwide. Findings suggest that attending the MSS ECHO provided an educational and meaningful learning experience. The gains in knowledge and confidence in psychosocial aspects of epilepsy care and comorbidities highlight the importance of the inclusion of this content in educational programs.


Assuntos
Epilepsia , Enfermeiras e Enfermeiros , Criança , Humanos , Competência Clínica , Estudos Retrospectivos , Epilepsia/diagnóstico por imagem , Convulsões
3.
J Pharm Pract ; : 8971900221126570, 2022 Oct 04.
Artigo em Inglês | MEDLINE | ID: mdl-36193947

RESUMO

Some patients with epilepsy experience seizure clusters, which may be defined as 2 or more seizures occurring within 24 hours. Left untreated, seizure clusters increase the risk for physical injury and may progress to status epilepticus, irreversible neurologic injury, and death. Rescue therapy is based on benzodiazepine treatment. Prompt, appropriate use should be specified in patients' individualized seizure action plans. Most seizure clusters occur outside the hospital setting. The ideal rescue therapy allows for easy and quick administration by a nonmedical person, which may minimize the need for intervention by emergency medical personnel or transportation to the hospital. In the 2 decades before the approval of 2 intranasal benzodiazepines in 2019 and 2020, rectal diazepam was the only route of administration approved by the US Food and Drug Administration specifically for seizure clusters. Each of the approved intranasal formulations has a unique profile. Both offer a convenient and socially acceptable route of administration. Recognition of seizure clusters and timing of proper administration are key to successful use of rescue therapy. Pharmacists' counseling plays an important role in reinforcing when and how to appropriately administer rescue therapies and the importance of consistently using rescue treatment when indicated to promote effective management. This review includes resources for pharmacists, patients, and caregivers; reviews currently available treatments; and discusses seizure action plans that support effective treatment of seizure clusters.

4.
Epilepsy Behav ; 129: 108624, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-35247833

RESUMO

OBJECTIVES: Seizures and epilepsy are very common neurologic disorders, yet knowledge of how to help a person having a seizure is sorely lacking, increasing the potential for injury and early death for people with seizures. We developed a standardized seizure first aid (SFA) training certification for the general public and evaluated its impact on knowledge and self-efficacy about SFA and program satisfaction. METHODS: The Epilepsy Foundation's SFA certification was developed by a multidisciplinary group of experts, with extensive review, feasibility testing, and analysis of pilot tests from 10 sessions with 177 participants. Pre/post assessments were conducted immediately prior to and after participation in the 60-90-min program. Data from 94 people with complete pre/post assessments were used for analysis of demographics, program outcomes, and satisfaction. Descriptive statistics, paired sample T-tests, and Cronbach α coefficients were conducted. RESULTS: Participants were over age 18, primarily female, and white/Caucasian. Significant improvements were seen in both SFA knowledge and self-efficacy on pre/post assessments across all pilot sites. Fourteen of 23 scale items had significant pre/post improvements. Training satisfaction was rated high by almost all participants. CONCLUSIONS: The Epilepsy Foundation's Seizure First Aid certification focuses on ability to recognize seizure symptoms, respond with correct first aid steps, and know when emergency help is needed. Pilot assessments support increased knowledge and self-confidence, critical to promoting positive behavior change. This program offers an easy and scalable way for the general public to learn SFA and enhance seizure recognition and safety of people with seizures.


Assuntos
Epilepsia , Primeiros Socorros , Adulto , Certificação , Epilepsia/diagnóstico , Epilepsia/terapia , Feminino , Humanos , Masculino , Convulsões/diagnóstico , Convulsões/terapia , Autoeficácia , Estados Unidos
5.
Epilepsy Behav Rep ; 16: 100493, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34816116

RESUMO

There has been increasing interest by the general public to read and share mainstream medical and scientific literature. Consequently, more and more medical journals are adopting strategies to make complex literature more accessible to the lay public. One such strategy is the creation of so called "lay summaries". The benefits of lay summaries can include wider dissemination of knowledge, and is increasingly being recognized as a unique expertise by authors. While on the surface, it may seem to be an easy task to translate scientific literature into a lay summary. However, occasionally authors who are experienced in communicating complex information to a peer group, may struggle with translating their work to an audience with limited medical or scientific background. The objective of this review is to discuss strategies that scientific writers may consider to better facilitate translating scientific literature into lay summaries.

6.
Epilepsy Behav ; 125: 108444, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-34839243

RESUMO

BACKGROUND: The number and type of therapies available to treat seizure clusters (SCs) or periods of increased seizure activity have risen in recent years. Gaps still exist on defining SCs, when to use them, and educating patients and families. The Epilepsy Foundation developed and published expert-derived consensus on preferred practices for rescue therapies (RTs), 79% of which were agreed upon by a larger group of healthcare professionals (HCPs). This paper describes insights from people with epilepsy (PWE) and families/caregivers (FCGs) on these practices to assess similarities and trends between PWE, FCGs, an expert panel, and HCPs. METHODS: Online survey including expert-derived preferred practices for RT was completed by a convenience sample of 176 PWE/FCGs. Respondents rated agreement with each preferred practice using a 0-8 point Likert scale. Results were examined by relationship to epilepsy, prior use of RTs, and comparison to the expert panel and larger group of HCPs. RESULTS: 41.5% of respondents were PWE and 54.6% were FCGs; 70% represented PWE age 18 and over or those who cared for adults with epilepsy. Levels of agreement were similar to those of HCPs - consensus was obtained on 79% of preferred practices. Differences were noted on which items achieved consensus and strength of consensus for some items. Differences between PWE and FCG, and between those who had and had not previously used a RT were found. A proposed definition of SCs did not reach consensus, but there was strong consensus for individualized seizure action plans and more RT education.


Assuntos
Epilepsia , Adolescente , Adulto , Cuidadores , Epilepsia/terapia , Pessoal de Saúde , Humanos , Convulsões , Inquéritos e Questionários
7.
NASN Sch Nurse ; 36(2): 104-109, 2021 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-33648392

RESUMO

Project ECHO (Extension for Community Healthcare Outcomes) is an evidence-based telementoring approach to connect often siloed school nurses with a network of expert clinical and academic faculty, as well as school nurse colleagues throughout the country by engaging in case-based learning. Managing Students with Seizures ECHO: The Importance of School Nurses (MSwS ECHO) provided two cohorts of school nurses with an interactive, bidirectional educational program focused on various aspects of seizures and epilepsy relevant to school nurse practice. MSwS ECHO enhanced school nurses' confidence in caring and advocating for students with seizures and epilepsy, expanded school nurses' access to resources and professional networks, and provided the opportunity to collaborate with experts and colleagues to problem solve challenging real-life cases. The ECHO Model is a unique and effective teaching modality that can be applied to a variety of school health topics and chronic conditions. School nurses are encouraged to participate in forthcoming ECHO-based learning opportunities.


Assuntos
Enfermeiras e Enfermeiros , Serviços de Enfermagem Escolar , Humanos , Instituições Acadêmicas , Convulsões , Estudantes
8.
Epilepsy Behav ; 117: 107836, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33640567

RESUMO

BACKGROUND: Some of the most difficult issues in the care of people living with epilepsy (PWE) regard the definition, treatment, and communication of unexpected increase(s) in seizure frequency over a relatively short duration of time. In order to address this issue, the Epilepsy Foundation established the Rescue Therapy Project in Epilepsy to understand the gaps, needs, and barriers facing people with epilepsy who use or may benefit from rescue therapies (RTs) for "seizure clusters". The intent was to provide consensus-derived recommendations from a broad stakeholder group including PWE, their caregivers, epilepsy specialist physicians, nurses, pharmacists, and representatives of epilepsy & neurology advocacy and professional organizations. METHODS: During Phase 1, a group of epilepsy experts and stakeholders (N = 54) were divided into 3 workgroups that met by conference calls and in-person. Content of workgroups was developed into preferred practices related to RTs. In Phase 2, these recommendations were evaluated by a larger more diverse group of healthcare professionals, PWE, and caregivers. Agreement with recommended preferred practices at 80% or greater was set as the level to achieve consensus. RESULTS: The preferred practices were centered around four core themes identified by the experts and key stakeholders: the importance of a common language; when RTs should be prescribed; assessing the need for RTs; and education/communication about RTs. Consensus from experts and key stakeholders was reached for 27 recommended preferred practices using the Delphi method. "Rescue therapy" or "rescue medicine" was the preferred term to describe what to name a treatment intervention in this context, and seizure action plans was the preferred term to communicate how to respond to a seizure or SCs and the use of RTs. In Phase 2, 23 of the recommendations reached final consensus, including the need for a common language, and the need to consider RTs and seizure action plans in all PWE in an individualized manner, several circumstances in which RTs should be prescribed, and the importance of education regarding RTs and SAPs.


Assuntos
Epilepsia , Convulsões , Cuidadores , Consenso , Epilepsia/terapia , Pessoal de Saúde , Humanos , Convulsões/terapia
9.
Epilepsy Behav ; 111: 107228, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32599431

RESUMO

PURPOSE: People with epilepsy (PWE) come from a wide variety of social backgrounds and educational skillsets, making self-management (SM) education for improving their condition challenging. Here, we evaluated whether a mobile technology-based personalized epilepsy SM education intervention, PAUSE to Learn Your Epilepsy (PAUSE), improves SM measures such as self-efficacy, epilepsy SM behaviors, epilepsy outcome expectations, quality of life (QOL), and personal impact of epilepsy in adults with epilepsy. METHODS: Recruitment for the PAUSE study occurred from October 2015 to March 2019. Ninety-one PWE were educated using an Internet-enabled computer tablet application that downloads custom, patient-specific educational programs from Epilepsy.com. Validated self-reported questionnaires were used for outcome measures. Participants were assessed at baseline (T0), the first follow-up at completion of the PWE-paced 8-12-week SM education intervention (T1), and the second follow-up at least 3 months after the first follow-up (T2). Multiple linear regression was used to assess within-subject significant changes in outcome measures between these time points. RESULTS: The study population was diverse and included individuals with a wide variety of SM educational needs and abilities. The median time for the first follow-up assessment (T1) was approximately 4 months following the baseline (T0) and 8 months following baseline for the second follow-up assessment (T2). Participants showed significant improvement in all SM behaviors, self-efficacy, outcome expectancy, QOL, and personal impact of epilepsy measures from T0 to T1. Participants who scored lower at baseline tended to show greater improvement at T1. Similarly, results showed that participant improvement was sustained in the majority of SM measures from T1 to T2. CONCLUSION: This study demonstrated that a mobile technology-based personalized SM intervention is feasible to implement. The results provide evidence that epilepsy SM behavior and practices, QOL, outcome expectation for epilepsy treatment and management, self-efficacy, and outcome expectation and impact of epilepsy significantly improve following a personalized SM education intervention. This underscores a greater need for a pragmatic trial to test the effectiveness of personalized SM education, such as PAUSE to Learn Your Epilepsy, in broader settings specifically for the unique needs of the hard-to-reach and hard-to-treat population of PWE.


Assuntos
Escolaridade , Epilepsia/psicologia , Qualidade de Vida/psicologia , Autogestão/psicologia , Classe Social , Telemedicina/métodos , Adulto , Epilepsia/terapia , Feminino , Seguimentos , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Autoeficácia , Autogestão/métodos , Inquéritos e Questionários
10.
Epilepsy Behav ; 98(Pt A): 258-265, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31398690

RESUMO

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.


Assuntos
Epilepsia/psicologia , Medicina de Precisão/psicologia , Qualidade de Vida/psicologia , Autoeficácia , Autogestão/psicologia , Populações Vulneráveis/psicologia , Adolescente , Adulto , Idoso , Epilepsia/economia , Epilepsia/terapia , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Medicina de Precisão/economia , Medicina de Precisão/métodos , Autogestão/economia , Autogestão/métodos , Adulto Jovem
11.
Epilepsy Behav ; 90: 273-283, 2019 01.
Artigo em Inglês | MEDLINE | ID: mdl-30391149

RESUMO

OBJECTIVE: The Connectors Project, a collaboration between the Epilepsy Foundation and UCB Pharma, was a multiyear project designed to improve epilepsy care in underserved communities. A core objective of the Connectors Project was to pilot new and innovative approaches to epilepsy awareness and education in rural and underserved areas, including standardized curricula for healthcare providers and patients. METHODS: A series of consensus conferences explored opportunities and barriers to epilepsy care throughout the United States including access to local Epilepsy Foundations, neurologists, and epilepsy centers. Data from QuintilesIMS™ were examined for access to newer antiepileptic drugs (AEDs)-a proxy for quality of epilepsy care-in different regions. State factors (e.g., local epilepsy foundation office, access to newer vs. older AEDs, and geographic density and diversity) were used in selecting four states as examples of rural and underserved areas to pilot the awareness and educational programs. For each state, a work team assessed challenges and opportunities, tailored educational curricula, and developed strategies for effective delivery of the educational programs. Interventions were held between June 2016 and June 2017. Interventions consisted of outreach and awareness programs, in-person health education to healthcare providers and patients/families, and digital health education. RESULTS: Michigan, Nevada, Oklahoma, and West Virginia were identified as pilot states representing geographically diverse areas, ranging from a state with a large high-density population center with several epilepsy centers and a local Epilepsy Foundation office (Michigan) to a state with predominately rural areas and a few small urban cores, two epilepsy centers, and no in-state Epilepsy Foundation office (West Virginia). State work teams tailored interventions and examined options for type, intent, ease of use, and impact. All states implemented outreach and awareness initiatives and in-person health education for patients and healthcare providers; use of digital health education was variable. Measurement of the interventions was agreed to be performed by the use of patient and physician surveys and reevaluation of data from QuintilesIMS for access to newer AEDs. CONCLUSION: Local Epilepsy Foundation offices successfully connected healthcare providers in rural and underserved areas to epilepsy education designed to enhance quality care in epilepsy. Educational opportunities for people with epilepsy and their families addressed critical gaps in accessing quality epilepsy care and self-management. Tailored and innovative educational approaches can be used to increase awareness levels and to overcome geographic challenges in reaching underserved populations. Relationship building and repeated, consistent engagement with healthcare providers and patients can assist in improving communication and self-management skills among patients with epilepsy.


Assuntos
Epilepsia/terapia , Área Carente de Assistência Médica , Inovação Organizacional , População Rural/tendências , Terapias em Estudo/tendências , Anticonvulsivantes/uso terapêutico , Epilepsia/diagnóstico , Epilepsia/epidemiologia , Feminino , Humanos , Masculino , Qualidade da Assistência à Saúde/tendências , Inquéritos e Questionários , Terapias em Estudo/métodos , Estados Unidos/epidemiologia
12.
Epilepsia ; 59(5): 1020-1026, 2018 05.
Artigo em Inglês | MEDLINE | ID: mdl-29604050

RESUMO

OBJECTIVE: Common data elements (CDEs) are currently unavailable for mobile health (mHealth) in epilepsy devices and related applications. As a result, despite expansive growth of new digital services for people with epilepsy, information collected is often not interoperable or directly comparable. We aim to correct this problem through development of industry-wide standards for mHealth epilepsy data. METHODS: Using a group of stakeholders from industry, academia, and patient advocacy organizations, we offer a consensus statement for the elements that may facilitate communication among different systems. RESULTS: A consensus statement is presented for epilepsy mHealth CDEs. SIGNIFICANCE: Although it is not exclusive, we believe that the use of a minimal common information denominator, specifically these CDEs, will promote innovation, accelerate scientific discovery, and enhance clinical usage across applications and devices in the epilepsy mHealth space. As a consequence, people with epilepsy will have greater flexibility and ultimately more powerful tools to improve their lives.


Assuntos
Elementos de Dados Comuns/normas , Epilepsia , Neurologia/normas , Telemedicina/normas , Terminologia como Assunto , Humanos
13.
Epilepsy Behav ; 80: 98-103, 2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-29414565

RESUMO

PURPOSE: How antiepileptic drugs (AEDs) are used in the United States (US) is one proxy public health indicator for the current state of epilepsy management. The use of phenytoin, other older AEDs, and newer AEDs may act as an indicator for the quality of epilepsy practice in addition to the current American Academy of Neurology quality measures. Data on AED used by states and populations can help identify which public health interventions are necessary to improve the status of epilepsy care. The Connectors Project, a collaboration between the Epilepsy Foundation and UCB Pharma, is a multiyear project designed to improve epilepsy awareness and management in underserved communities. The objective of the first phase of the Connectors Project was to assess geographic variation in epilepsy care and identify locations in need of improved epilepsy care by initially evaluating AED use in the US. METHODS: A retrospective cross-sectional administrative claim analysis was conducted using the QuintilesIMS™ database which included US longitudinal retail prescription and office medical claims data. Patients with a confirmed epilepsy diagnosis who were prescribed AEDs were identified. Patients with an AED prescription over a 3-year period from January 2013 to December 2015 were included if they had an epilepsy diagnosis in the 2-year period before their first AED prescription in the reporting period. The percentages of patients initially prescribed phenytoin, other older AEDs (carbamazepine and valproate), and newer AEDs (eslicarbazepine, lacosamide, lamotrigine, levetiracetam, oxcarbazepine, perampanel, topiramate) were calculated and stratified by US state and Washington, DC. Patients were considered newly treated if they had an epilepsy diagnosis code and had not received an epilepsy drug in the 1-year period preceding the first AED prescription in the reporting period. Data are reported using the moving annual total ending December 2015. RESULTS: Approximately 2.5 million US patients with epilepsy and their AED prescriptions were identified from 2013 to 2015. Predictably, states with the largest population had the highest number of patients with epilepsy who were prescribed an AED, including California, Texas, Florida, and New York. Regions with the highest total proportion of phenytoin use with a low proportion of newer AED use were Mississippi (24.4% and 53.1%, respectively) and Washington, DC (24.7% and 58.1%). Montana had the lowest proportion of phenytoin use with the highest proportion of newer AED use (7.9% and 70.4%). Among newly treated patients (N=237,347), Hawaii (39.1%) and Alaska (38.8%) had the highest percentage of phenytoin use compared with all other states. Idaho (86.1%) and Montana (84.4%) had the highest proportion of newer AED use. Washington, DC (50.9%) and Hawaii (60.9%) had the lowest proportion of patients treated with newer AEDs. North Dakota (29.6%) and Washington, DC (27.9%) had the highest rates of other older AEDs use. CONCLUSIONS: A substantial proportion of newly treated US patients with epilepsy are underserved regarding newer AED use with Mississippi and Washington, DC having the highest proportion of phenytoin use relative to newer AED use. Understanding the socioeconomic and demographic barriers for these observations is essential in planning interventions to improve the quality of life and care for patients with epilepsy, including newly treated patients. These data provide a baseline to target educational and clinical interventions for improving the quality of US epilepsy care.


Assuntos
Anticonvulsivantes/uso terapêutico , Epilepsia/tratamento farmacológico , Qualidade da Assistência à Saúde , Adulto , Idoso , Estudos Transversais , Bases de Dados Factuais , Epilepsia/epidemiologia , Epilepsia/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Estudos Retrospectivos , Estados Unidos/epidemiologia
14.
Neurol Clin ; 34(2): 443-56, ix, 2016 May.
Artigo em Inglês | MEDLINE | ID: mdl-27086989

RESUMO

Patient education in epilepsy is one part of quality epilepsy care and is an evolving and growing field. Health outcomes, patient satisfaction, safety, patient/provider communication, and quality of life may all be affected by what people are taught (or not taught), what they understand, and how they use this information to make decisions and manage their health. Data regarding learning needs and interventions to address medication adherence and sudden unexpected death in epilepsy education can be used to guide clinicians in health care or community settings.


Assuntos
Morte Súbita/epidemiologia , Epilepsia , Educação de Pacientes como Assunto/métodos , Qualidade de Vida , Autocuidado/métodos , Epilepsia/epidemiologia , Epilepsia/psicologia , Epilepsia/terapia , Humanos , Medição de Risco
15.
Epilepsy Behav ; 57(Pt A): 16-22, 2016 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-26906403

RESUMO

Seizure clusters in epilepsy can result in serious outcomes such as missed work or school, postictal psychosis, emergency room visits, or hospitalizations, and yet they are often not included in discussions between health-care professionals (HCPs) and their patients. The purpose of this paper was to describe and compare consumer (patient and caregivers) and professional understanding of seizure clusters and to describe how consumers and HCPs communicate regarding seizure clusters. We reviewed social media discussion sites to explore consumers' understanding of seizure clusters. We analyzed professional (medical) literature to explore the HCPs' understanding of seizure clusters. Major themes were revealed in one or both groups, including: communication about diagnosis; frequency, duration, and time frame; seizure type and pattern; severity; and self-management. When comparing discussions of professionals and consumers, both consumers and clinicians discussed the definition of seizure clusters. Discussions of HCPs were understandably clinically focused, and consumer discussions reflected the experience of seizure clusters; however, both groups struggled with a common lexicon. Seizure cluster events remain a problem associated with serious outcomes. Herein, we outline the lack of a common understanding and recommend the development of a common lexicon to improve communication regarding seizure clusters.


Assuntos
Cuidadores/psicologia , Comunicação , Epilepsia/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Pessoal de Saúde , Convulsões/epidemiologia , Autocuidado , Mídias Sociais , Vocabulário Controlado , Conscientização , Epilepsia/diagnóstico , Hospitalização , Humanos , Internet , Prevalência , Convulsões/psicologia
16.
Epilepsy Behav ; 50: 184-9, 2015 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-26264465

RESUMO

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


Assuntos
Gerenciamento Clínico , Epilepsia/terapia , Autocuidado/normas , Inquéritos e Questionários/normas , Adaptação Psicológica , Adulto , Epilepsia/psicologia , Análise Fatorial , Feminino , Nível de Saúde , Humanos , Masculino , Adesão à Medicação/psicologia , Pessoa de Meia-Idade , Qualidade de Vida/psicologia , Reprodutibilidade dos Testes , Autocuidado/métodos , Autocuidado/psicologia , Apoio Social
17.
Epilepsy Behav ; 50: 172-83, 2015 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-26303037

RESUMO

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


Assuntos
Gerenciamento Clínico , Epilepsia/psicologia , Epilepsia/terapia , Qualidade de Vida/psicologia , Autocuidado/psicologia , Autocuidado/tendências , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Comportamentos Relacionados com a Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Autocuidado/métodos , Estigma Social , Apoio Social , Inquéritos e Questionários , Adulto Jovem
19.
Epilepsia ; 54(2): 207-16, 2013 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-23294462

RESUMO

In March 2012 the Institute of Medicine (IOM) released the report, Epilepsy Across The Spectrum: Promoting Health and Understanding. This report examined the public health dimensions of the epilepsies with a focus on the following four areas: public health surveillance and data collection and integration; population and public health research; health policy, health care, and human services; and education for providers, people with epilepsy and their families, and the public. The report provided recommendations and research priorities for future work in the field of epilepsy that relate to increasing the power of data on epilepsy; prevention of epilepsy; improving health care for people with epilepsy; improving health professional education about epilepsy; improving quality of life for people with epilepsy; improving education about epilepsy for people with epilepsy and families; and raising public awareness about epilepsy. For this article, the authors selected one research priority from each of the major chapter themes in the IOM report: expanding and improving the quality of epidemiologic surveillance in epilepsy; developing improved interventions for people with epilepsy and depression; expanding early identification/screening for learning impairments in children with epilepsy; evaluating and promoting effective innovative teaching strategies; accelerating research on the identification of risk factors and interventions that increase employment and improve quality of life for people with epilepsy and their families; assessing the information needs of people with epilepsy and their families associated with epilepsy-related risks, specifically sudden unexpected death in epilepsy; and developing and conducting surveys to capture trends in knowledge, awareness, attitudes, and beliefs about epilepsy over time and in specific population subgroups. For each research priority selected, examples of research are provided that will advance the field of epilepsy and improve the lives of people with epilepsy. The IOM report has many other research priorities for researchers to consider developing to advance the field of epilepsy and better the lives of people with epilepsy.


Assuntos
Epilepsia/terapia , Promoção da Saúde/métodos , Interpretação Estatística de Dados , Atenção à Saúde , Educação Médica , Epilepsia/prevenção & controle , Família , Educação em Saúde , Humanos , National Academies of Science, Engineering, and Medicine, U.S., Health and Medicine Division , Melhoria de Qualidade , Qualidade de Vida , Pesquisa , Estados Unidos
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