How does epilepsy affect your life? How severe are your seizures? How much improvement was there after your last treatment change? These are major concerns for everyone who has epilepsy. One way to define the impact of epilepsy and seizures on your life is to record your feelings on questionnaires. Assessments of quality of life (QOL) and seizure severity can be used to document your status, as well as your progress before and after treatment changes.

How to Track Your Quality of Life and Severity of Seizures

Epilepsy.com provides you with several standardized questionnaires that you may download for personal use. Select one of the quality of life questionnaires (QOLIEs) and the Seizure Severity Questionnaire (SSQ) and complete them now. Answer the questions again in a few months, or after a treatment change. Share this information with your doctor to show what has improved and what has stayed the same (or worsened).

Although the questionnaires are copyrighted, you may download single copies for personal use. Contact epilepsy.com for information about other uses.Please note that no changes should be made in any questionnaire without contacting the copyright holder.

Quality of Life in Epilepsy

The QOLIE-31 is a survey of health-related quality of life for adults (18 years or older) with epilepsy. Adolescents (ages 11-17 years) should complete the QOLIE-AD-48, designed for that age group. This questionnaire should be completed only by the person who has epilepsy (not a relative or friend) because no one else knows how YOU feel.

There are 31 questions about your health and daily activities. Answer every question by circling the appropriate number (1, 2, 3...). If you are unsure about how to answer a question, please give the best answer you can and write a comment or explanation on the side of the page. These notes may be useful if you discuss the QOLIE-31 with your doctor. Completing the QOLIE-31 before and after treatment changes may help you and your doctor understand how the changes have affected your life.

• View QOLIE-31 PDF (version 1) (38K)

Quality of Life in Epilepsy-Problems

The QOLIE-31-P is a survey of health-related quality of life for adults (18 years or older) with epilepsy. [Adolescents (ages 11-17 years) should complete the QOLIE-AD-48, designed for that age group.] This version differs from the original QOLIE-31 (version 1) in the addition of questions about how much distress you feel about problems and worries related to epilepsy. This questionnaire should be completed only by the person who has epilepsy (not a relative or friend) because no one else knows how YOU feel.

There are 38 questions about your health and daily activities. Answer every question by circling the appropriate number (1, 2, 3...). If you are unsure about how to answer a question, please give the best answer you can and write a comment or explanation on the side of the page. These notes may be useful if you discuss the QOLIE-31-P with your doctor. Completing the QOLIE-31-P before and after treatment changes may help you and your doctor understand how the changes have affected your life.

• View QOLIE-31-P PDF (version 2) (70K)

Quality of Life in Epilepsy for Adolescents

The QOLIE-AD-48 is a survey of health-related quality of life for adolescents (11-18 years of age) with epilepsy. Adults (18 years or older) should complete the QOLIE-31-P, designed for that age group. This questionnaire should be completed only by the person who has epilepsy (not a relative or friend) because no one else knows how YOU feel.

There are 48 questions (in two parts) about your health and daily activities. Answer every question by circling the appropriate number (1, 2, 3...). The first part asks about your general health. The second part asks about the effects of your epilepsy and antiepileptic medications. Please answer every question by circling the appropriate number (1, 2, 3, 4, 5). If you are not sure about how to answer a question, please give the best answer you can. You may write notes in the margin to explain your feelings. Even if some questions look similar, answer every question.

If you are unsure about how to answer a question, please give the best answer you can and write a comment or explanation on the side of the page. These notes may be useful if you discuss the QOLIE-AD-48 with your doctor. Completing the QOLIE-AD-48 before and after treatment changes may help you and your doctor understand how the changes have affected your life.

• View QOLIE-AD-48 PDF (version 1) (46K)

Seizure Severity Questionnaire

The Seizure Severity Questionnaire (SSQ) is a review of various aspects of seizures. The person who has seizures may ask people who have observed the seizures (family, friends) to help answer some of the questions asking about events, but not about feelings. Only the person who has seizures knows how it feels. There are 11 questions in three sections asking about events before, during, and after typical seizures.

Please describe the MOST COMMON TYPE OF SEIZURE when answering the questions. If you are unsure about how to answer a question, please give the best answer you can and write a comment or explanation on the side of the page. These notes may be useful if you discuss the SSQ with your doctor. Completing the SSQ before and after treatment changes may help you and your doctor understand how the changes have affected your life.

• View SSQ PDF (version 3) (41K)

Topic Editor: Joyce Cramer, Yale University
Last Reviewed: 10/03/06