Epilepsy Across the Spectrum Promoting Health and Understanding (2012) / Chapter Skim
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Summary
Pages 1-18
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From page 1... ...
The challenges facing the estimated 2.2 million people with epilepsy in the United States include having access to high-quality health care, becoming informed about and coordinating health care and community services, and dealing with stigma and common public misunderstandings. Living with epilepsy, particularly for people with refractory seizures, can involve challenges in school, uncertainties about social and employment situations, limitations on driving, and questions about independent living.
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From page 2... ...
The impacts on physical health and quality of life encompass a spectrum as well, with individuals experiencing different health outcomes and having a range of activities of daily living that may be affected, including driving, academic achievement, social interactions, and employment. For some people, epilepsy is a childhood disorder that goes into remission (although the seizures may have lifelong consequences)
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From page 3... ...
To accomplish its task, the IOM convened the Committee on the Public Health Dimensions of the Epilepsies, which comprised 17 members with expertise in epilepsy care, health services research, epidemiology, public health surveillance, mental health services, health care services and delivery, health literacy, public health, education, and communications. The IOM study had 24 sponsors: 12 federal agencies and 12 nonprofit organizations.
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From page 4... ...
Critical to realizing this vision will be additional research to further develop the evidence base as outlined in the research priorities in Chapter 9. INCREASING THE POWER OF EPILEPSY DATA Comprehensive, timely, and accurate epilepsy surveillance data are needed to provide a better understanding of the burden of the disorder, its risk factors and outcomes, and health services needs.
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From page 5... ...
• ilot projects should explore the linkage and use of emerging P data collection and sharing partnerships using electronic health records and other electronic repositories (e.g., all-payer claims databases, regional health information organizations, the Health Maintenance Organization Research Network, NIH's Health Care Systems Research Collaboratory, the Health Care Cost Institute) for epilepsy surveillance and research.
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From page 6... ...
, through mechanisms such as the use of seatbelts, to prevent TBI associated with motor vehicle accidents, as well as helmets, including improved helmet design, to reduce the occurrence and severity of TBI in sports and military combat. In addition, progress in the prevention of epilepsy's other risk factors -- such as stroke, through targeted efforts to reduce risk factors, and brain infections such as meningitis, through sustained vaccination programs -- will likely result in fewer new cases of epilepsy.
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From page 7... ...
Epilepsy centers are vital in providing specialized epilepsy care and have the potential to build on their current efforts by forming a network for health professional education, clinical research, and data collection and analysis. Developing and maintaining a national quality measurement and improvement strategy is another critical component of ensuring high-quality epilepsy care.
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From page 8... ...
An independent organization with expertise in quality measurement and care should assist in the development of the national strategy, particu larly the development of performance metrics. The national quality improvement strategy should • evelop and implement a plan to disseminate existing clinical d guidelines and educate health professionals and people with epilepsy and their families about them; • efine performance metrics for epilepsy with specific attention to d access to care for underserved populations, access to specialized care, co-management of care among all health care providers, and coordination of care with other health care providers and community services organizations; • ontinue the development and implementation of a set of perfor c mance metrics that includes patient-generated measures; and • evelop demonstration projects to validate performance metrics d and test the feasibility of tracking outcomes of care.
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From page 9... ...
• ndependently accredited epilepsy centers should I emphasize patient-centered care that focuses on co-management approaches with primary care providers, mental health care providers, and other specialists; ensure that community service providers are an integral part of the centers and actively collaborate with them to link people with epilepsy to services for all facets of the individual's health and well-being; use standardized performance metrics for quality epilepsy care; publicly report on a standard set of quality, outcome, and health services data; provide onsite education and training for epilepsy specialists (e.g., technicians, nurses, researchers, physicians) as well as educational opportunities, particularly continuing education, for other health and human services professionals in the com munity; and serve as sites for pilot projects on innovative approaches to improving co-management and coordination of care, as well as health care quality, access, and value for people with epilepsy.
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From page 10... ...
• nsure that educational materials and programs for health pro E fessionals reflect current research, clinical guidelines, and best practices. These educational materials and programs also should convey positive messages that reduce stigma and reinforce the need for (and skills associated with)
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From page 11... ...
These efforts should • upport and expand efforts by the Epilepsy Foundation's state s and local affiliates and other organizations to link people with epilepsy and their families to local and regional resources, em phasizing active collaboration among affiliates in the same region or with similar interests; • evelop innovative partnerships and incentives to collaborate d with organizations and public-private partnerships focused on other neurological and chronic diseases or disorders; • onduct and evaluate pilot studies of interventions to improve c the academic achievement of students with epilepsy; • aintain effective private, state, and national programs that as m sist people with epilepsy regarding transportation, employment, and housing; • evelop and disseminate evidence-based best practices in employ d ment programs for people with epilepsy; • dentify and disseminate best practices for the coordination of i health care and community services, including programs using patient and parent navigators;
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From page 12... ...
for commu nity service providers focused on epilepsy awareness and seizure first aid training. RAISING AWARENESS AND IMPROVING EDUCATION Patient and Family Education Research consistently demonstrates that many people with epilepsy do not have a solid understanding of basic information about their condition -- how it is diagnosed, seizure precipitants or triggers, types of seizures, the purpose and potential side effects of seizure medications, safety concerns, and the risks and potential consequences of seizures.
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From page 13... ...
• ngage state and local Epilepsy Foundation affiliates, epilepsy E centers, and health care systems and providers to expand the dissemination of available educational resources and self management tools to people with epilepsy and their families. • xplore the development of a formal, standardized certificate E program for epilepsy health educators.
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From page 14... ...
Clear messages conveyed through multiple forms of media, including social media and the Internet, along with diverse educational activities targeted to specific audiences, are necessary for successful stigma reduction and public awareness efforts. Any such efforts, local or national, should take into account the health literacy and cultural characteristics of target audiences, with different strategies developed for reaching each audience.
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From page 15... ...
Efforts are being made by a number of organizations to advance research and to improve health care and human services for people with epilepsy and their families. One of the impressive collaborative efforts is the uniting of more than 20 nonprofit organizations and 3 federal agencies in the Vision 20-20 coalition, which focuses on moving the epilepsy field forward through coordinated efforts and the development of public-private partnerships.
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From page 16... ...
Given their interests and to the extent possible, people with epilepsy and their families should • ecome informed about epilepsy and actively participate in and b advocate for quality health care and community services with policy makers at the local, state, and national levels; • iscuss best options for care with health care providers, includ d ing exploring referrals to epileptologists or epilepsy centers and learning about available community resources and services as needed;
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From page 17... ...
This report highlights numerous gaps in knowledge about and management of epilepsy and also presents opportunities to move the field forward. Improvements in surveillance methods and electronic health records hold promise for more precise information about the epilepsies, which could enable better identification of high-risk groups and better matching of treatments to individuals.
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