Epilepsy Across the Spectrum Promoting Health and Understanding (2012) / Chapter Skim
Currently Skimming:
9 Next Steps and Recommendations
9 Next Steps and Recommendations
Pages 425-444
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From page 425... ...
To provide high-quality care, the health professionals who care for people with epilepsy need to know more about epilepsy, its diagnosis, and its treatment and management, as well as its comorbidities and the risk of premature death. Given the range of effects that epilepsy has on quality of life, people with epilepsy and their families often need a variety of community services, but work remains to ensure that these services are consistently available and evidence based.
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From page 426... ...
• Once more robust data are available, analyses should be performed to determine overall incidence, prevalence, health disparities, ser vices use and costs, quality of and access to care, risk factors, comorbidities, health status, and quality-of-life outcomes, as well as data for specific subgroups. A variety of efforts is needed to accomplish comprehensive surveillance of the epilepsies, close current knowledge gaps, and adequately inform policy makers, public health agencies, health care providers, and the general public.
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From page 427... ...
At present, many research questions and gaps remain where more complete information could provide a sound basis for prevention, including in public health, clinical care, education programs, and community efforts. RESEARCH PRIORITIES FOR IMPROVING Box 9-1 SURVEILLANCE AND PREVENTION To improve surveillance and prevention of epilepsy and its consequences, the following areas should be considered priorities for future research: • tudies to identify effective interventions for epilepsy accompanied by S mental health comorbidities • tudies that test whether treatment of comorbid mental health conditions S ameliorates adverse outcomes • ase-control studies of risk factors for injuries, suicide, status epilepticus, C and sudden unexpected death in epilepsy (SUDEP)
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From page 428... ...
• 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
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From page 429... ...
Historically, persuading health professionals to work across professional boundaries has been difficult. One of the challenges for government and institutional policy makers will be to devise organizational structures and incentive systems that make it easy -- even attractive -- for people from multiple professions to work together.
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From page 430... ...
While significant progress has been made in developing seizure medications with fewer adverse effects, as well as in refining medical devices and surgical techniques for select types of epilepsy, much remains to be done to reduce the sometimes lengthy delays in diagnosis and referral to more advanced levels of care, to improve care for those with refractory epilepsy, and to provide a better response to comorbidities, including mental health conditions. While this committee was asked not to explore biomedical research, over time there will be advances in this field that need to move into routine care in a timely and equitable fashion.
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From page 431... ...
and comorbidities, with initial attention to setting priorities for this research • ealth services research on the provision and effectiveness of epilepsy H care by primary care providers, neurologists, and epileptologists, including referrals to epilepsy centers and to specialists for care of comorbidities • ssessment of differences in the utilization of epilepsy health care services, A particularly for underserved populations • tudies of the capacity of the workforce that cares for people with S epilepsy • tudies that examine value measures for epilepsy care as well as potential S reductions in health care costs through changes in access to specialized care and improved coordination with providers caring for comorbid health conditions • nalysis of cost savings by reducing emergency department use and A hospitalizations • ssessment of incentive strategies for the participation of clinical staff A in collaborative service models and co-management of complex cases, including strategies to promote timely referral to surgery, mental health services, and higher levels of care professionals, in addition to physicians, are involved in epilepsy care. These include nurses, nutritionists, pharmacists, psychologists, and clinical social workers.
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From page 432... ...
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 433... ...
and processes with independent external review mechanisms for the ac creditation of epilepsy centers. Accredited epilepsy centers should work together to form an Epilepsy Care Network that includes data sharing, clinical trial and other research networking, professional education, and other collaborative activities.
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From page 434... ...
• he Epilepsy Care Network of Accredited Epilepsy Centers T should conduct collaborative clinical and health services research; collect, analyze, and disseminate quality, outcome, and health services data from all of the accredited centers; and collaborate and partner with state health departments and other health care providers to ensure coverage across rural and under served areas through telemedicine, outreach clinics, and other mechanisms. RECOMMENDATION 7 Improve Health Professional Education About the Epilepsies The AES and AAN should collaborate with relevant professional orga nizations that are involved in the education of the wide range of health professionals who care for people with epilepsy to ensure that they are sufficiently knowledgeable and skilled to provide high-quality, patient centered, interdisciplinary care.
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From page 435... ...
This report has examined the range of community services -- daycare and school, employment, transportation, housing, sports and recreation, and others directed at family support -- relevant to improving quality of life for people with epilepsy. The committee urges improvements to community services and programs to ensure that they are • patient-centered to meet the needs of the person with epilepsy; • locally focused, taking into account the full range of resources in the area; • easily accessible; • thoroughly evaluated; • closely linked to health care providers, particularly epileptologists and epilepsy centers; and • innovative and collaborative in working with organizations and agencies focused on other neurological and chronic conditions or on similar service needs.
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From page 436... ...
Specific at tention should be given to identifying needs and improving community services for underserved populations. 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;
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From page 437... ...
Obtaining the requisite knowledge and skills related to epilepsy and its management can also promote optimal well-being and quality of life for people with epilepsy and their families, help prevent misconceptions about the disorder, and reduce concerns about stigma. People with epilepsy and their families should • receive and have access to up-to-date, accurate information about epilepsy, treatment options, and associated comorbidities and risks, including SUDEP, as well as information about available vocational and community resources and health care services upon diagnosis and throughout their care; • have access to information that meets their specific needs and that is clearly written and communicated, appropriate for various health literacy levels, and linguistically and culturally appropriate; • build knowledge and self-management skills, including how to solve problems, make decisions, use resources, develop partner ships with health care providers, and participate actively in patient centered care; and
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This requires thorough testing of content with target audiences, including un derserved groups, and revision as necessary.
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From page 439... ...
• 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 440... ...
to determine effective strategies for educating the public through online resources • valuation of public awareness campaigns that include documentation E and analysis of pre- and post-campaign data to assess changes in public understanding of and beliefs about epilepsy and to establish best practices in developing public awareness efforts nerships within the entertainment media to encourage less sensationalistic portrayals and more opportunities for the passive acquisition of accurate knowledge about epilepsy, recognizing that the entertainment media have limits as educational vehicles. Meanwhile, the news and information (versus entertainment)
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From page 441... ...
RECOMMENDATION 11 Coordinate Public Awareness Efforts The Epilepsy Foundation and the CDC should lead a collaborative effort with relevant stakeholder groups, including other members of Vision 20-20, to continue to educate the public through awareness efforts, promotional events, and educational materials and should col laborate to do the following: • stablish an advisory council of people with epilepsy and their E families, media and marketing experts, private industry partners, and health care experts to meet regularly and to inform future efforts. • evelop shared messaging that emphasizes the common and D complex nature of the epilepsies and the availability of successful seizure therapies and treatments.
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From page 442... ...
For example, a working group on health policy, health reform, and advocacy could monitor legislative and policy activities at the local, state, and national levels; activate people with epilepsy and their families to play a role in informing policy makers; and advocate for legislation and policy changes that could improve health and quality of life for people with epilepsy. A working group on surveillance and population health and health services research could develop a comprehensive strategy to encourage people with epilepsy to participate in a broad range of research efforts from population-based surveillance to research focused on self-management and education.
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From page 443... ...
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;
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From page 444... ...
Preparing health professionals to provide better epilepsy care, although a challenge, will help improve quality and reduce costs. Consistent delivery of accurate, clearly communicated health information can better prepare people with epilepsy and their families to cope with the disorder and its consequences.
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