Publications by authors named "Patricia O Shafer"

Article Synopsis
  • Telemedicine became a popular option for epilepsy care during the COVID-19 pandemic, offering effective and quality care beyond just preventing virus transmission.
  • A survey conducted from June to October 2023 gathered responses from 285 participants across 60 countries, showing a significant rise in telemedicine usage during the pandemic but a decrease afterward, especially in terms of reimbursement and regulations.
  • While telemedicine usage and acceptance have improved, issues like reimbursement, regulations, and patient privacy need to be addressed for better implementation in the future.
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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.

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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.

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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.

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Article Synopsis
  • The Epilepsy Foundation developed expert guidelines for rescue therapies for seizure clusters, and 79% of healthcare professionals agreed on these practices, addressing gaps in understanding and education about seizure clusters for patients and families.
  • An online survey of 176 people, including those with epilepsy and their caregivers, assessed their agreement with the preferred practices, revealing a similarity in consensus levels with healthcare professionals.
  • While there was strong agreement on individualized seizure action plans and the need for enhanced education on rescue therapies, participants had differing views on various practices and did not reach consensus on a definition for seizure clusters.
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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".

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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Patients in an epilepsy monitoring unit (EMU) with video-EEG telemetry have a risk for seizure emergencies, injuries and adverse events, which emphasizes the need for strategies to prevent avoidable harm. An expert consensus process was used to establish recommendations for patient safety in EMUs. Workgroups analyzed literature and expert opinion regarding seizure observation, seizure provocation, acute seizures, and activity/environment.

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My Epilepsy Diary is a free Web-based application on the public website epilepsy.com, available for patients to track epilepsy and to aid clinicians with data-based, individualized management. The first aim of this descriptive study was to outline electronic diary functions.

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A committee assembled by the American Academy of Neurology (AAN) reassessed the evidence related to the care of women with epilepsy (WWE) during pregnancy, including preconceptional folic acid and prenatal vitamin K use and the clinical implications of placental and breast-milk transfer of antiepileptic drugs (AEDs). The committee evaluated the available evidence based on a structured literature review and classification of relevant articles. Preconceptional folic acid supplementation is possibly effective in preventing major congenital malformations in the newborns of WWE taking AEDs.

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The purpose of this study was to document seizure events associated with the use of a computer-based assessment and to describe the contextual factors surrounding these seizure episodes. Study participants were adults with epilepsy who were enrolled at research sites in Atlanta and Boston. Subjects were asked to complete a computer-based assessment at 3 time points.

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In North America, overall epilepsy incidence is approximately 50/100,000 per year, highest for children below five years of age, and the elderly. The best data suggest prevalence of 5-10/1000. Potential effects of gender, ethnicity, access to care and socioeconomic variables need further study.

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The purpose of the study described in this article was to evaluate the extent to which selected behavioral, social, and affective factors contribute to self-reported epilepsy self-efficacy. Participants completed three assessments 3 months apart, with only those completing both the first and second assessments included in this analysis. Self-efficacy scores at the second assessment were regressed on the behavioral, social, and affective characteristics ascertained at the first assessment.

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The purpose of this study was to describe the types of antiepileptic medication regimens and the types of actions required to take medications for a group of patients with epilepsy. The Epilepsy Medication and Treatment Complexity Index (EMTCI) was used to gather information about medications and treatments. The sample of 314 reported on 585 epilepsy medications.

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The purpose of this study was to test a psychosocial model of medication self-management among people with epilepsy. This model was based primarily on social cognitive theory and included personal (self-efficacy, outcome expectations, goals, stigma, and depressive symptoms), social (social support), and provider (patient satisfaction and desire for control) variables. Participants for the study were enrolled at research sites in Atlanta, Georgia, and Boston, Massachusetts and completed computer-based assessments that included measures of the study variables listed above.

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