Epilepsy care quality indicators were determined by a study funded by the Centers for Disease Control and Prevention (Pugh et al, Neurology 2007;69:2020-7) for patients with a first seizure, patients newly diagnosed with epilepsy, patients with chronic epilepsy including those who have refractory seizures and those who experience drug side effects, and issues that are specific to women of childbearing age. Additional epilepsy care quality indicators were identified from patient focus groups. This page discusses quality, its relevance to patient care and how it is measured. The links to the right under "In This Section" will take you to particular quality indicators for each of these groups.

What is Quality?

In order to better understand how quality measures can be used to improve care, it is important to clarify the meaning of quality of care and what aspects of care should be measured. A number of definitions for quality have been proposed. However, there is general consensus that quality of care is that care which maximizes a patient's welfare, improves or maintains quality and/or duration of life and leads to desired health outcomes. This definition suggests that quality indicators assess aspects of care associated with patient outcomes.

Quality is typically described as having three distinct components: technical quality, interpersonal quality, and amenities of care. Technical quality entails making the right decision for each patient and having the technical skill to perform the care. Interpersonal quality includes quality of communication; ability to gain/ maintain patient trust; and the ability to interact in a way that demonstrates empathy, honesty, and sensitivity to the patient's concerns. Interpersonal quality is particularly important for patients with epilepsy since it is a chronic disease that requires the patient to adapt to profound lifestyle changes. For example, patients may lose driving privileges, which may impair their ability to work or accomplish normal daily responsibilities. Amenities of care include equipment and facilities that may be associated with better patient outcomes. Most quality measures focus on technical and interpersonal components of care.

An important consideration of developing a quality measure is the idea of what should be measured. Most agree that three aspects of care are important for quality measures. First is structural factors, which include characteristics of the physician or the health care facility, such as physician specialty, or facility organization. The second aspect includes measures that involve processes of care—aspects of the clinical encounter such as procedures completed, medications prescribed and lab tests ordered. Outcomes include measures of a patient's subsequent health status such as physical functioning, mental functioning, and satisfaction with the care provided. These three components are related, and each has its strengths and limitations.

Structural measures are often the easiest to capture, but they provide only limited insights into the actual quality of care rendered, and are often not within the control of the health care provider. Process measures are the most sensitive indicators of actual differences in the type of care provided and they are usually easy to interpret. For instance, a finding that 70% of patients in a medical practice have blood pressures under 130/80 is tangible and easy to understand. Process measures are sometimes criticized because they seem irrelevant to actual patient outcomes. For example, a commonly used process measure in evaluating hypertension care is whether the blood pressure was checked in both arms. While this may be important to assure that blood pressure is accurately measured, this has no effect in and of itself on blood pressure control. Outcome measures, on the other hand, capture something that is obviously important. The problem with outcome measures, however, is that they can be influenced by many factors that do not reflect quality of care, and are not within the control of the clinician. For instance, a clinician may provide perfect technical care for a patient who does not take the prescribed medication, or for a patient with advanced disease that does not respond as expected. The patient outcome in these situations does not reflect the care provided, but rather underlying patient factors. While the goal of epilepsy care is 'no seizures, no side effects,' high quality of care can be provided and yet the patient may continue to have seizures or side effects from antiepileptic drugs.

How Quality Measures Can Reflect Quality of Care

Many wonder if quality measures actually reflect the quality of care provided. One way to decide is to look at the process that was used in the development of specific quality measures. In order to promote practices that are evidence-based, most quality measures are based on systematic review of the literature, and endorse practices that are supported by data obtained from randomized controlled trials, meta analysis, or observational data with a low risk of bias.

Developers of these measures usually use a modified Delphi process in which they first conduct a systematic review of the literature, and then create an initial pool of statements based on that literature review.

The particular quality measures discussed in this section came from a research project funded by the Centers for Disease Control (Pugh et al, Neurology 2007;69:2020-7) which was published in Neurology. Unlike many other quality measures, the development of these epilepsy quality indicators discussed in this section also included processes of care that were identified by patients as being critical to their perceptions of high quality epilepsy care. These statements were then subjected to expert panel review to assure that there was consensus that they reflect high quality of care for patients who receive their care in primary care or general neurology settings. The expert panel that rated these quality indicators consisted of 9 epilepsy specialists and one primary care provider.

These statements were structured so that they described specific situations in which patients should receive specific types of care processes, and also described why these processes of care are important. Generally, these processes of care have been associated with improved patient outcomes in the literature.

The expert panel rated the extent to which initial items were valid (a process of care in which the benefit of use far outweighed the potential risks, regardless of cost, and which was believed to represent high quality of care) and reliable (one which could be reliably measured) measures of high quality epilepsy care. After the initial rating, some items were dropped from further consideration because they were identified as invalid or unreliable measures of quality within a primary care setting. One such item was:

IF the patient has been diagnosed as having epilepsy by a primary care or emergency room provider THEN the diagnosis should be confirmed by a neurologist or epilepsy specialist within four to eight weeks.

After the statements were revised, the expert panel rated the items again for validity and reliability. That rating identified several items as inappropriate measures of quality in the primary care setting. One such indicator was:

IF a newly diagnosed person with epilepsy is over the age of 60 AND received initial treatment with an enzyme inducing AED (phenobarbital, phenytoin, carbamazepine, oxcarbazepine), THEN a non-enzyme inducing AED should be started as a maintenance drug as soon as possible (even after treatment stabilization).

The remaining quality indicators were then rated to identify items that are necessary (a process in which failure to recommend would be viewed as improper clinical judgment). In this case only items also rated as necessary are included as quality measures. This rating identified several items that experts thought were valid but not necessary measures of high quality epilepsy care. One example is: A person with epilepsy should receive screening for depression at least once each year.

Items that were rated as both valid and necessary indicators are primary quality indicators. Items that were rated as valid but not necessary are secondary quality indicators.

While this system is rigorous, you may wonder, "What about processes of care that have never been examined in a randomly controlled trial?". In fact many common processes of care that are thought to be important in the care of patients with epilepsy such as informing patients about safety issues and screening for mental health disorders have not been subjected to randomized controlled trials. However the idea of not providing information on activities that may be unsafe for patients with epilepsy is unethical. As a result, some statements included in quality measures are not based on high grade evidence, but rather on expert opinion (and common sense). If these items were not thought to be valid and reliable by panel members, they would be excluded. So, while not every important aspect of care is included in quality measures, the goal of the process is to identify the most important aspects of care that can be reliably measured.

How Quality is Measured

A concern among many clinicians is how quality is measured using these quality indicators. These types of quality indicators are often assessed by reviewing medical charts and determining when patients meet specific criteria, and if the identified processes of care are documented as having been provided. Medical chart abstraction is effective for identifying many of these quality indicators, but some limitations exist. It is possible that processes of care are provided, but not specifically documented in the medical chart. This is most likely to occur with care processes associated with patient education other than driving restrictions.

One way to deal with the limitation of incomplete documentation of important but less medically focused processes of care is to conduct surveys with epilepsy patients. Patients report the types of care they have received. These surveys also allow assessment of a patient's mental, physical, and epilepsy specific health status. These measures allow researchers and clinicians to examine the relationship of quality of care and patient outcomes.

For more information:

  • American Medical Association. Quality of care. JAMA 1986;256:1032–1034.
  • Donabedian A. Explorations in quality assessment and monitoring: The definition of quality and approaches to its assessment. Volume 1. Michigan: Health Administration Press; 1980.
  • Kerr EA, Asch SM, Hamilton EG, McGlynn EA. Quality of care for cardiopulmonary conditions: a review of the literature and quality indicators. California: RAND, 2000.
  • Kerr EA, Asch SM, Hamilton EG, McGlynn EA. Quality of care for general medical conditions: a review of the literature and quality indicators. California: RAND, 2000.
  • Langfitt JT. Do we know quality epilepsy care when we see it? Neurology 2007;69:1968-1969.
  • Lohr K. Medicare: a strategy for quality assurance. Washington: National Academy Press, 1990.
  • Lohr KN, Donaldson MS, Harris-Wehling J. Medicare: a strategy for quality assurance, V: Quality of care in a changing health care environment. QRB Qual Rev Bull 1992;18:120–126.
  • McGlynn EA, Asch SM, Adams J, et al. The quality of health care delivered to adults in the United States. N Engl J Med 2003;348:2635–2645.
  • Pugh MJ, Berlowitz DR, Montouris G, et al. What constitutes high quality of care for adults with epilepsy? Neurology 2007;69:2020-2027.

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Epilepsy.com would like to thank Ortho-McNeil Neurologics/Johnson & Johnson and Pfizer for their generosity in providing unrestricted educational grants in support of the sections on quality care. These grants help us to expand our mission to inform and empower patients and their families.

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Authored by: Mary Jo V. Pugh PhD RN | Steven C. Schachter MD on 4/2008
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