Epilepsy Centers of Excellence (ECoE)
Quality Indicators in Epilepsy Treatment
The Quality Indicators in Epilepsy Treatment Tool—QUIET—is designed to benchmark the quality of care for adults with epilepsy in primary care and general neurology clinics. QUIET addresses these aspects of care: evaluation of seizures, initial diagnosis and treatment, chronic care, chronic care for women, and patient-generated concerns.
Epilepsy care must balance seizure control, adverse drug effects, issues associated with epilepsy (e.g. mood disorders), and consequences of long-term treatment with seizure medications (e.g. bone health). Most people living with epilepsy receive treatment primarily within the context of primary care or shared care. QUIET can be useful for assessing the degree to which clinical care addresses the complexity of epilepsy care in these settings.
More information about the development of QUIET can be found in “What constitutes high quality of care for adults with epilepsy?” Funding for QUIET was provided by the Centers for Disease Control (CDC).
QUIET Measures were determined by a panel of epilepsy experts and patient focus groups. The 10-member expert panel was composed of general internists, epileptologists, nurses, and health researchers. The panel appraised national clinical guidelines and systematic reviews of the literature, and then rated the appropriateness, reliability, and necessity of each quality indicator. The patient focus group (17 patients) generated the patient-centered care indicators.
QUIET Indicators focus on processes linked with improved patient outcomes in clinical literature that can be reliably measured. The framework for determining quality indicators combines the best available scientific evidence with the collective judgment of experts.
Defining Quality. Quality is defined as processes that maximize the patient’s welfare, improves (or maintains) the quality or duration of life, and leads to desired health outcomes. The Institute of Medicine (IOM) defines quality as the degree to which health services (a) increase the likelihood of desired health outcomes of individuals and population and (b) are consistent with current professional knowledge.
Dimensions of Quality. Technical quality (right decision for patients, technical skill), interpersonal quality (communication, gaining trust, interacting with empathy, honesty, and sensitivity to patient’s concerns), and amenities of care are the three dimensions of quality.
Measures of Quality. QUIET measures encompass structure (characteristics of provider such as provider specialty), process (aspects of the encounter such as prescribed medications or lab tests), and outcomes (patient’s health status).
METHOD FOR DETERMINING INCLUSION AS QUALITY INDICATOR
The expert panel employed the RAND Appropriateness Method (RAM). Experts conducted a literature search on MEDLINE and CINAHL for systematic reviews and guidelines. Guidelines, reports, and practice parameters were sourced from:
* Agency for Healthcare Research and Quality (AHRQ)
* National Committee for Quality Assurance (NCQA)
* Centers for Disease Control and Prevention (CDC)
* National Guidelines Clearinghouse (NGC)
* National Institute for Health and Clinical Excellence (NICE)
* Scottish Intercollegiate Guidelines Network (SIGN)
* George Washington University Medical Center Report on Managing Epilepsy Care
* American Academy of Neurology
A quality indicator could only be included if the item had to been mentioned in at least two sources and was deemed to be of crucial importance by the expert panel. Three rounds of discussion ensued to create a final set of indicators necessary for high quality care.
QUIET may be used by primary care providers, general neurologists, and epilepsy specialists to guide the care for adults with epilepsy. QUIET is not intended as a care guideline. In primary care these quality indicators may provide guidance about basic processes of care that are important for adults with epilepsy.
Primary care and general neurology providers may gain insight into situations where patients may benefit from a referral to a neurologist or epilepsy specialist. Epilepsy specialists may use these quality indicators to educate other clinicians about basic aspects of care that are essential for adults with epilepsy.
QUIET provides a foundation for quality improvement in the care of adults with epilepsy by allowing for the identification of gaps between recommendations and clinical practice. Baseline assessment can identify specific aspects of care that may be improved through the implementation of targeted interventions.
QUIET can give any facility or practice a snapshot of quality of care. QUIET allows for identification of gaps in quality for epilepsy care and can be used to improve the care provided for adults with epilepsy.
Care for epilepsy can be reliably and feasibly measured using medical chart abstraction. To score each Quality Indicator (QI), we created operational definitions that identified data elements to score each QI. The ‘IF’ portion of the QI was used to determine where the applicable condition was present and the ‘Then’ portion was used to determine if the process of care as defined by the QI had been provided. Some QIs focus on a single visit while others examine the construct over time.
A Chart Abstraction tool was designed to be used with Microsoft Access for collecting data. Go to The quality of care for adults with epilepsy: an initial glimpse using the QUIET measure for more information .
EVALUATION OF INITIAL SEIZURE
1. All patients should have the results of at least one EEG reviewed or requested. If EEG was not performed previously, then an EEG should be performed.
2. All patients should have results of at least one MRI or CT scan reviewed or requested. Or, if a MRI or CT scan was not obtained previously, then a MRI or CT scan should be ordered (MRI preferred).
3. All patients should receive information on driving restrictions, safety, and injury prevention.
INITIAL DIAGNOSIS & TREATMENT
4. If a patient is thought to have a diagnosis of epilepsy, then the diagnosis should include a best estimation of seizure types.
5. If the patient meets the criteria for epilepsy diagnosis (generally two unprovoked seizures), then seizure medication (SM) treatment should be discussed with and offered to the patient and caregivers.
6. If the patient is diagnosed with a seizure disorder/epilepsy and started on therapy, then monotherapy is preferred.
7. If the patient is a woman of childbearing potential (12-44 years old), then referral to a neurologist or an epilepsy specialist is indicated.
8. If a woman with epilepsy is of childbearing potential (12-44 years old), then she should receive information about the teratogenicity associated with treatment with valproate or topiramate and accept those risks prior to treatment.
9. If the patient is diagnosed with a seizure disorder/epilepsy, then during the visit the patient should receive information on:
* Driving restrictions, safety and injury prevention, diagnosis and treatment options including the importance of taking SMs as directed
* Triggers and other lifestyle factors that may affect seizure control (e.g. sleep deprivation, alcohol/drug use), and contraception and family planning
10. If a person with epilepsy is prescribed an SM that interacts with warfarin, then INR should be monitored within a week of any change in SM therapy, especially during polytherapy. Once the INR is stable, it should be monitored every four weeks.
CHRONIC EPILEPSY CARE
11. When a patient with epilepsy receives follow-up care, then an estimate of the number and types of seizures since the last visit and an assessment of drug side-effects should be documented.
12. When a patient with epilepsy receives follow-up care, then drug side-effects should be assessed and documented.
13. If the patient continues to have seizures after initiating treatment, then interventions should be performed. Options include:
* Compliance assessment/enhancement
* Monitor SM blood levels
* Increased SM dose
* Change SM dose
* Patient education regarding lifestyle modification
* Referral to higher level of epilepsy care
14. If a patient with epilepsy continues to have seizures after three months of care by a primary care provider, then further assessment by a neurologist should be conducted.
15. If a patient continues to have seizures after 12 months of appropriate care by a general neurologist, then the patient should receive a referral to an epilepsy specialist.
16. Patients with epilepsy should receive an annual review of information including topics such as:
* Chronic effects of epilepsy and its treatment including
* Drug side-effects, drug-drug interactions, and their effect on bone health,
* Contraception, family planning, and how pregnancy or menopause may affect seizures,
* Screening for mood disorders,
* Triggers and lifestyle issues that may affect seizures,
* Impact of epilepsy on other chronic and acute diseases,
* Safety issues (injury prevention, burns, driving restrictions, etc.)
* Other patient self-management issues
17. If the patient is on SM for 2 or more years, then providers should assess bone health.
18. Individuals receiving seizure medications should be screened for depression/suicide related behaviors (e.g., PHQ-9) initially, then 4-6 weeks (or the next clinic visit) after SM initiation and then at least yearly.
19. If a person with epilepsy is found to have evidence of a mood disorder (e.g., depression, anxiety), then s/he should receive treatment or a referral for mental health care.
CHRONIC EPILEPSY CARE FOR WOMEN
20. If a woman with epilepsy is of childbearing potential (12-44 years old), then she should receive daily supplemental folate at a dose of at least 400 mcg.
21. If a woman with epilepsy is of childbearing potential (12-44 years old) and receives oral contraceptives in conjunction with an enzyme inducing SM, then decreased effectiveness of oral contraception should be addressed. (Higher doses of oral contraceptives, alternative birth control methods, or change SM may be needed).
22. Prenatal care for a woman with epilepsy should be co-managed by a neurologist and an obstetrician with experience in high risk pregnancy to assure that issues related to the impact of epilepsy and its treatment on the pregnancy are addressed.
PATIENT GENERATED QUALITY INDICATOR STATEMENTS
23. Providers should refer patients to local support groups or other resources to obtain psychosocial support.
24. Providers should encourage patients to become educated about epilepsy and to advocate for themselves in the health care system and with providers. For example, provide patients with written material about epilepsy, references to epilepsy foundation or epilepsy web sites.
25. Providers should communicate with patients about potential medication side effects, including cognitive, emotional, physical and sexual side effects.
26. Providers should give referrals to social services to assist with employment, negotiating through the Social Security Disability Insurance, insurance and alternative transportation for patients who cannot drive.
27. Providers should discuss the complexity of epilepsy treatment and explain that each patient responds to medications differently and that they may need to try several different medications before they find out what works best for that individual.
IOM (Institute of Medicine). Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington, D.C.: The National Academies Press; 2012. Full Text| http://www.iom.edu/Reports/2012/Epilepsy-Across-the-Spectrum.aspx
National Institute for Health and Clinical Excellence. The Epilepsies: The Diagnosis and Management of the Epilepsies In Adults And Children In Primary And Secondary Care. London: National Institute for Health and Clinical Excellence; 2012.Full Text | http://publications.nice.org.uk/the-epilepsies-the-diagnosis-and-management-of-the-epilepsies-in-adults-and-children-in-primary-and-cg137
Pugh MJ, Berlowitz DR, Montouris G, et al. What constitutes high quality of care for adults with epilepsy? Neurology. 2007 2007;69(21):2020-2027. Abstract http://www.ncbi.nlm.nih.gov/pubmed/17928576
Pugh MJ, Berlowitz DR, Rao JK, et al. The quality of care for adults with epilepsy: an initial glimpse using the QUIET measure. BMC Health Serv Res. 2011;11:1. Full Text | http://www.biomedcentral.com/1472-6963/11/1
Scottish Intercollegiate Guidelines Network. Diagnosis and Management of Epilepsy in Adults 2003/2005. Full Text | http://www.sign.ac.uk/pdf/sign70.pdf