What are quality care and quality indicators?
We all want to get the best care we can when we need it. But how do we know if we are getting the best quality of care? There are lots of way to define and measure quality of health care. Regulators and insurance companies may define quality care by what is done when you are seen by a doctor or go to a hospital. Others may look at the cost of care. Looking at a person's satisfaction with their care is also an important part of quality care. Patient satisfaction varies from one person to another and may be affected by what medical problems a person has and the type of care they need.
People with epilepsy and their families are faced with another issue. They may not have access to the type of care they need. Efforts have been underway to better understand quality care in epilepsy as well as find ways to improve care that is given. A research project funded by the Centers for Disease Control and published in the journal Neurology in 2007 identified some quality measures for epilepsy.
Since many people with seizures are not seen by epilepsy specialists, the researchers developed ways to measure quality of care (called quality indicators) that focused on care for people with epilepsy in primary care and general neurology clinics.
- The researchers reviewed exisiting clinical guidelines and the medical literature to develop a list of items that were considered important for quality care.
- Other items were added from results of patient focus groups and a panel of experts.
- These items were rated by the expert panel and resulted in a list of indicators of quality epilepsy care.
This project has led to ongoing work to evaluate and improve the quality of care in epilepsy. Doctors and other licensed health care providers must document specific information about a person's epilepsy and care, as well as education given to a person at specific intervals (for example, at each visit or once a year). An updated set of quality indicators just for epilepsy includes key issues that should be addressed for people with epilepsy.
What are the latest quality indicators for epilepsy?
A revised set of quality indicators, called the Epilepsy Update Quality Measurement Set, was presented in April 2014. Your doctor or other licensed health care providers need to know what these measures are and how to use them when caring for people with epilepsy.
Your health care provider should:
- Ask at each visit how many different types of seizures you have and how often you have each type. If you are not seizure free, your health care provider should discuss a change in treatment to improve seizure control or why a treatment change is not indicated or needed.
- Ask at each visit whether you have any medication side effects and then takes steps or actions to improve them.
- Review at each visit the cause of your epilepsy or the name of your epilepsy syndrome, unless the cause is unknown.
- Discuss each year seizure safety that is relevant to your type of seizures, your age, and other circumstances.
- Ask about depression, developmental problems or similar problems at each visit.
- Consider referring you to an epilepsy center if you have persistent seizures in the past two years, despite trying at least two anti-seizure medications.
- Discuss the effects of seizure medication on pregnancy each year if you are a woman who could get pregnant.
How can people with epilepsy and their families use this information?
Quality care in epilepsy and the new quality indicators for health care providers can help people with epilepsy and their families know
- What they should expect from their primary care and neurology doctors and nurses
- Examples of good care from epilepsy specialists
- That these (or other examples of quality care) could help researchers and health care administrators evaluate the services that people are given
- How the quality indicators can be used to get the care they need
How can these be used?
The information from the 2007 study on quality indicators was developed into checklists. These checklists can be used by people with seizures, their families, or care providers for many reasons, for example to:
- Know what questions to ask their health care team
- Know what services or help they should get
- Know when to ask certain questions
- Know what role they have in their epilepsy care
These indicators are not the only way you, or anyone else, will measure your epilepsy care. But we hope these will help you get the care you need along your epilepsy journey.
- When first diagnosed
- After the diagnosis
- If seizures don’t stop
- If medications cause side effects
- Questions for the doctor
- Just for Women
What else should I know about epilepsy care?
Epilepsy can be pretty complicated when seizures aren't controlled by medications or are difficult to diagnose. People may need more advanced care if they are very young, older, women, have seizures and other medical problems, or have seizures that are interfering with their quality of life and daily living. Look at the following pages for more help with seizures and when to consider specialized epilepsy care.