Epilepsy Across the Spectrum Promoting Health and Understanding (2012) / Chapter Skim
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4 Health Care: Quality, Access, and Value
4 Health Care: Quality, Access, and Value
Pages 161-230
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From page 161... ...
A patient-centered approach to health care is needed with an emphasis on the coordination of epilepsy-specific services with care for comorbidities and with links to community services. Actions needed to ensure that health care for people with epilepsy is evidence based, population based, and patient centered include accrediting epilepsy centers and establishing a network of centers, developing and implementing a quality care framework and performance measures, and enhancing the screening and referral options and protocols for early identification of epilepsy in high-risk populations, of comorbidities, and of refractory epilepsy.
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–Richard Leslie I mproving the lives of people with epilepsy and their families involves sustained and coordinated efforts, ranging from increasing the under standing of the biomedical mechanisms of the disorder to enhancing clinical treatment and community services. Because epilepsy is a common neurological disorder that can have many physical, psychological, cognitive, and social manifestations, quality care may require the knowledge and skills of a wide range of health and community service professionals and necessitate that people with epilepsy, family members, and caregivers are knowledgeable about the disorder, can recognize potential danger signs, and are skilled in self-management as appropriate.
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had consulted a neurologist at some point, with 62 percent having a neurologist as their primary physician for epilepsy care at the time of the survey. Respondents were more likely to have consulted a neurologist if they had been diagnosed within the previous 1 Throughout the report, the term "primary care provider" is used to encompass many health professionals, including family physicians, general internists, general pediatricians, obstetrician-gynecologists, geriatricians, physician assistants, and nurse practitioners.
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From page 164... ...
tends to stabilize over time, but again, the patterns varied among systems and also among subgroups within each system. For example, over the course of a year, 14 to 48 percent of epilepsy patients were treated in emergency departments, 8 to 55 percent were hospitalized, 21 to 75 percent had a neurologist visit, and 68 to 100 percent received seizure medications.
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165 HEALTH CARE: QUALITY, ACCESS, AND VALUE typically diagnoses epilepsy based on the patient's self-report or a family member's report of seizures and the patient's medical history. This is complicated by the fact that a number of medical conditions that are not epilepsy can look like seizures (Chapter 1)
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Seizure Medications The primary method of treatment for the epilepsies is medication aimed at controlling seizure recurrence, typically by decreasing brain excitation or increasing brain inhibition. In a population-based survey, Kobau and colleagues (2008)
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167 HEALTH CARE: QUALITY, ACCESS, AND VALUE TABLE 4-2 Diagnostic and Treatment Considerations for Specific Populations Population Diagnostic and Treatment Considerations Children • Diagnostic challenges of age-related clinical and electroencephalograph features of seizures • Different side effects and dosing schedules for medications • Identifying seizure medication formulations determined to be appropriate for children • Potential lifelong cognitive and disabling effects of seizures suffered during childhood • Helping children begin to take responsibility for self-management • Education of school personnel in recognition and treatment of seizures Youth • Impact of hormonal changes on seizures, side effects of medications, drug interactions, and comorbidities • Increased responsibilities for self-management • Impact of seizures, treatment, and comorbidities on educational and vocational planning and on driving and transportation Older adults • Potential for drug interactions with medications for other health conditions • Possible cognitive side effects of some medications • Increased potential for injury • Self management may be in jeopardy, depending on cognitive functioning caregiver assistance may be needed Women • Susceptibility to changes in seizures during menstrual cycle or at other times of hormonal fluctuations (e.g., menopause) • Potential impact of seizures and/or medications on reproductive functioning, pregnancy, breastfeeding • Risk for malformations and impaired cognitive development of offspring of women taking seizure medications or suffering seizures during pregnancy Individuals with • Communication difficulties may hamper diagnosis and ability to intellectual delineate the seizure type disabilities • Assessing drug toxicity or treatment side effects in patients with severe intellectual disabilities may be challenging • High risk of injury from seizures and side effects of medications • High rate of psychiatric comorbidities Underserved • Reduced treatment options relative to access to health services populations • Medication adherence • Other access and health literacy issues, including language barriers and the need, in some cases, for medical interpreters • High rates of comorbidities People with • Seizures associated with brain injury may be missed or misdiagnosed traumatic brain as mental health conditions or other physical problems injury • Seizure medications must be selected carefully to avoid exacerbating other problems of traumatic brain injury Oncology • Interactions of seizure medications with chemotherapeutic drugs that patients may decrease concentrations of chemotherapeutic agents in the body
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Chronic seizure medications are either broad-spectrum drugs that are effective in treating a variety of different seizure types or narrowspectrum drugs that are primarily effective for specific seizure types (e.g., absence, myoclonic, tonic-clonic)
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. A randomized controlled study found that 58 percent of people with mesial temporal lobe epilepsy who received epilepsy surgery were free
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. An evidence review that was conducted to develop practice parameters for epilepsy surgery found that surgery's benefits outweighed the benefits of continued medical therapy in people with mesial temporal lobe epilepsy, while not posing greater risk, and recommended consideration of referral to an epilepsy surgery center for individuals with refractory seizures (Engel et al., 2003)
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Teaching about trigger management and lifestyle modifications is a frequent component of epilepsy care provided by nurses and social workers (Legion, 1991; Shafer, 1994)
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• Develop a national quality framework for epilepsy care, which involves improving and implementing practice guidelines and de veloping, implementing, and assessing performance metrics to en hance the quality of epilepsy care. • Evaluate and accredit epilepsy centers.
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In addition, a screening test or protocol is needed that could identify individuals with persistent seizures who need to be referred to an epileptologist for further evaluation and treatment. As discussed later in this chapter and throughout the report, referrals of patients with refractory epilepsy to epilepsy centers often take more than 15 years and the goal is to move toward earlier referral patterns.
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. Additionally, the screening of people with epilepsy for at-risk conditions, including mental health conditions and impaired bone health as a side effect of some seizure medications, needs to be part of the standard protocol for epilepsy care.
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Ensuring appropriate use of seizure medications For epilepsy patients, excessive drug load can lead to suboptimal outcomes, including greater incidence or severity of side effects or even increased frequency of seizures (Perucca and Kwan, 2005; Schmidt et al., 2002)
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. To reduce the inappropriate use of seizure medications, clinicians should assess whether some drugs can be safely reduced, substituted, or eliminated -- and at what pace -- and should examine potential pharmacokinetic interactions with medications treating comorbidities (Bourgeois, 2002)
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. The operational definition of refractory epilepsy is the failure to control seizures after two seizure medications (whether as monotherapies or in combination)
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For example, a history of depression or depressive symptoms has been reported in up to two-thirds of patients with refractory epilepsy (Lambert and Robertson, 1999) , but the side effects of some seizure medications include symptoms of depression (Andersohn et al., 2010; Bell and Sander, 2009; Mula and Sander, 2007)
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Health professionals need to convey information in ways that take into account health literacy and cultural sensitivities. In particular, they need to clearly communicate the risks of epilepsy and be aware of the resources and services that are available, including state and local Epilepsy Foundation affiliates and organizations working to help individuals with specific epilepsy syndromes or types of epilepsy.
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. Major components of the program, which showed reduced symp toms of depression and improved health status in a randomized controlled trial, included problem solving, encouragement of social and physical activity, and communication between the psychiatrist and the patient's primary care physician about possible treatment with antidepressants (Ciechanowski et al., 2004)
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. Developing a National Strategy for Performance Measurement and Quality Improvement in Epilepsy Care: Improving Practice Guidelines and Implementing Performance Metrics Evidence-based guidelines provide the basis for ensuring the consistent delivery of high-quality health care.
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To date, epilepsy-specific practice guidelines have been developed primarily by pro
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A National Clinical Guideline D (Scottish Intercollegiate Guidelines Network, 2003) aSome of the AAN Practice Guidelines were developed in conjunction with the American Epilepsy Soci ety, ILAE, or the Child Neurology Society.
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. To achieve quality in health care and develop the accountability and transparency needed to incentivize change and to allow comparisons within and among health care providers, the focus over the past 20 years has been on developing, implementing, and analyzing performance metrics.
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Measuring performance and improving quality in epilepsy care The epilepsy community has taken important first steps in the development of performance metrics for high-quality epilepsy care. The American Academy
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The epilepsy community, in conjunction with the CMS, NQF, private insurers, and other organizations involved in performance measurement and quality improvement, should continue to develop, implement, evaluate, and report on evidence-based metrics for care of people with epilepsy. Further, there are ongoing efforts to develop a set of performance metrics focused on epilepsy care within primary care and general neurology clinics.
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A national strategy for performance measurement and quality improvement in epilepsy care could • provide a roadmap for next steps in developing performance met rics to allow for an organized effort to prioritize, develop, evaluate, and approve new metrics; • establish definitive standards for the attributes that performance metrics must meet in order to be included in a measurement set; • ensure transparency; • emphasize a patient-centered focus for quality in epilepsy care; and • provide an agenda for next steps in effectiveness reviews and the development of additional practice guidelines for epilepsy care. Evaluating and Accrediting Epilepsy Centers In 1978, the U.S.
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Subsequent changes in funding mechanisms led to curtailment of NIH funding for epilepsy centers and the eventual establishment of health care facility-based epilepsy centers. The committee looked at the current criteria for the four levels of epilepsy centers and explored how centers for other health conditions are evaluated in order to make recommendations for strengthening the nation's epilepsy centers.
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Models of Center Evaluation and Accreditation In considering next steps for epilepsy centers, the committee looked at processes used to designate and evaluate centers focused on other diseases. Relevant models having some preliminary outcome data and models of quality improvement initiatives include stroke centers, trauma centers, VA cancer centers, and cystic fibrosis centers.
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found that Joint Commission–certified Primary Stroke Centers had lower 30-day mortality risk for two different types of stroke compared to noncertified hospitals, although readmission rates were similar. The designation of trauma centers follows a different process than that of stroke centers.
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The following qualities of an accredited epilepsy center are deemed critical: • External evaluation -- Processes need to be developed for external review by the Joint Commission or a similar independent external body that will assess an applicant against national standards, cri teria, and quality metrics. • Research and data sharing network -- A set of common data ele ments to measure services, quality, and outcomes could be devel oped and reported by accredited epilepsy centers for accountability, quality, reporting, and research purposes.
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The committee is not specifying a particular system of certification or accreditation for epilepsy centers but emphasizes the need for an accreditation process that uses external evaluation. The approach could involve a tiered system of primary and comprehensive epilepsy centers, such as the system being put in place for Joint Commission–certified stroke centers or the ACS-designated trauma centers, or it could involve some other organizational structure.
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were 50 percent less likely to report taking seizure medications (Elliott et al., 2009)
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. Physicians serving patients covered by public insurance (Medicaid and the Child Health Insurance Program)
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BARRIERS USE OF SERVICES MEDIATORS O UTCOMES E ciency of treatment Structural Visits Health and well-being • Organization and • Functioning Hospitalizations Comorbidities coordination of services • Morbidity • Workforce capacity • Mortality Procedures Tolerability of treatment • Geographic location Community services Quality and availability Quality of life Financial of providers Self-management skills Interpersonal and personal Patient adherence • Cultural beliefs, health Public awareness literacy, communication and education • Stigma • Education -- provider, patient, family, and general public FIGURE 4-2 Model of access to health care services for people with epilepsy. SOURCE: Adapted from IOM, 1993.
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From page 196... ...
, and have clear direction on the timing and options for referrals to epilepsy centers and epileptologists. As noted earlier in this chapter, concerns have been raised about the length of time that some patients with refractory epilepsy wait for referrals to an epilepsy monitoring unit for further evaluation and a surgical consultation.
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Figure 4-3 illustrates the committee's view of the potential decision points for referrals to various providers and emphasizes that strong connections are needed with community resources throughout. In brief, the figure follows practice guidelines stipulating that epilepsy care for patients who are diagnosed and have seizures that are easily controlled with medical therapy may continue treatment with a general neurologist or primary care provider (Labiner et al., 2010)
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Quality metrics that emphasize timely referrals and co-management will make important progress toward this goal. Promote a Patient-Centered and Collaborative Approach to the Care of Epilepsy and Comorbid Health Conditions The committee emphasizes the need for a patient-centered, collaborative, and comprehensive approach to epilepsy care.
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While managed care plans may offer a more systematic way of caring for people with chronic and multiple conditions than traditional fee-for-services approaches, individuals with refractory epilepsy or comorbid conditions who require specialized evaluation and treatment may find it difficult to gain access to appropriate care. Organized health care delivery models (e.g., integrated delivery systems, medical or health homes, accountable care organizations)
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The following tools were developed from the work of many states participat ing in Project Access and the Epilepsy Learning Collaborative to assist patients, families, and health care providers: • arent Notebook: Binder with information (some of which would be P completed by the parents, such as medical history template, seizure log, provider list, and notes on visits with health care providers)
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. In a survey of NAEC epilepsy centers, responding centers indicated that the time for a new patient to see an epilepsy specialist aver
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The use of epilepsy specialist nurses or epilepsy health educators more consistently in epilepsy centers and in community settings could alleviate some pressure on the physician supply and provide a greater depth of resources for people with epilepsy and families. UK studies suggest that nurses can provide the important -- although time-consuming -- roles of coordinating care for comorbid health conditions and educating patients and families, and the United Kingdom has worked to strengthen its provision of epilepsy care through the work of epilepsy specialist nurses (Box 4-4)
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Opportunities to further explore the potential roles and responsibilities of epilepsy specialist nurses are needed. tions will involve building stronger links between epilepsy specialists and primary care providers in community health centers and in other local health programs.
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204 Honolulu, HI Caguas, PR FIGURE 4-4 National Association of Epilepsy Centers: Locations of the centers. NOTE: Some large cities have multiple epilepsy centers.
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. Initiatives in teleneurology focus on neurological consultations and interactions among the patient, the community health care provider, and epileptologists or other specialists via video links.
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. Young adults with comorbid health conditions may face many challenges in the transition from pediatric to adult providers (Camfield et al., 2011)
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Improve Health Insurance Coverage Advances in medications and therapies offer the promise of improved health and reduced burden of epilepsy. However, as discussed earlier in this chapter, evidence suggests that current health care for people with epilepsy is less optimal for those who have public insurance or no coverage than it is for those with private insurance.
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The total cost burden of epilepsy encompasses the direct costs of health and social services (e.g., costs related to physician visits, hospital use, seizure medications, counseling, rehabilitation, training) and the indirect costs related to lost productivity, reduced functioning, and early mortality.
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Enrollees with focal onset seizures were found to have significantly higher rates of mental health conditions, migraine and other neurological disorders, and other comorbidities compared to other enrollees, which contributed to the difference in total costs. Costs of seizure medications and health services directly attributed to epilepsy or seizures were $3,290 per person and accounted for less than half of the cost differential between enrollees with focal onset seizures and those without epilepsy (Ivanova et al., 2010)
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Too little is currently known about these important markers of the burden of epilepsy on the health care system. Cost-Effectiveness of Specific Services One of the areas in health care value that has received considerable attention regarding epilepsy care is the cost and cost-effectiveness of seizure medications.
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The wide variety of seizure types makes it difficult to compare seizure medications. Further studies are needed to examine the balance of cost, efficacy, and adverse side effects of different seizure medications for specific types of epilepsy, patient populations, and various combinations of polytherapy.
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By being patient-focused, self-management approaches promote support by the patient's network of health care providers and community resources. The patient and family are responsible for setting goals and implementing recommendations from their health care team and community services providers in a way that allows them to receive the care and support that are needed at the right time and in the way they can use it best.
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213 HEALTH CARE: QUALITY, ACCESS, AND VALUE ORGANIZATION AND INTEGRATION OF CARE AND SERVICES Focused on Quality, Access, and Value Community Health System Educational, recreational Patient-centered vocational, and health care disability support Patient and family self-management support Informed and engaged patient and family Supportive, Prepared, integrative proactive community practice team Optimal patient functional and clinical outcomes Optimal family adaptation FIGURE 4-5 Epilepsy care model. SOURCE: Adapted from Wagner, 1998.
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Actions needed to improve health care for people with epilepsy include accrediting epilepsy centers and establishing a network of centers, developing and implementing a quality care framework and performance measures, and enhancing the screening and referral options and protocols for early identification of epilepsy in high-risk populations, of comorbidities, and of refractory epilepsy. REFERENCES AANN (American Association of Neuroscience Nurses)
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2008. Economic analysis of newer antiepileptic drugs.
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2011. Care coordination: Improving transitions and coordination between health care providers and intersections with community services.
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2009. Evaluation of du ration of epilepsy prior to temporal lobe epilepsy surgery during the past two decades.
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2003. Practice parameter: Temporal lobe and localized neo cortical resections for epilepsy: Report of the Quality Standards Subcommittee of the American Academy of Neurology, in association with the American Epilepsy Society and the American Association of Neurological Surgeons.
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2001. Vagus nerve stimulation in children with refractory seizures associated with Lennox Gastaut syndrome.
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1998. Vagus nerve stimulation therapy for partial-onset seizures: A randomized active-control trial.
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Maternal and Child Health Services Block Grant Program. http:// mchb.hrsa.gov/programs/titlevgrants/index.html (accessed February 22, 2012)
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2009. Improving care at cystic fibrosis centers through quality improvement.
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2010. Essential services, personnel, and facilities in specialized epilepsy centers: Revised 2010 guidelines.
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2012a. Epilepsy centers.
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2011. Epilepsy centers of excellence: Department of Veterans Affairs.
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2009. Vagus nerve stimulation in pediatric epileptic syndromes.
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2009. Report of the American Epilepsy Society and the Epilepsy Foundation Joint Task Force on Sud den Unexplained Death in Epilepsy.
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2011b. Epilepsy centers of excellence: Epilepsy regional map.
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2011. Generic substitution of antiepileptic drugs: A sys tematic review of prospective and retrospective studies.
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