When treating a patient with epilepsy it is important to evaluate the degree to which their epilepsy affects their life. One way to define and monitor the impact of epilepsy and seizures on your patient's life is to ask patients to record their feelings on questionnaires. As such, assessments of quality of life (QOL) and seizure severity can be used to document your patient's status, as well as their progress before and after treatment changes.

How to track your patient's quality of life and severity of seizures

Epilepsy.com/professionals provides you with several standardized questionnaires that you may download for the personal use of you and your patients. Select one of the Quality of Life Questionnaires (QOLIEs) and the Seizure Severity Questionnaire (SSQ) and ask your patients to complete them. Ask the patient to answer the questions again in a few months, or after a treatment change. Ask you patients to share this information with you 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 Joyce Cramer (joyce.cramer@gmail.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-Patient-Weighted (QOLIE-31-P)

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 your patient feels 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 THEY feel.

There are 38 questions about your patient's health and daily activities. Have them answer every question by circling the appropriate number (1, 2, 3...). If your patient is unsure about how to answer a question, please have them give the best answer they 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 patient. Completing the QOLIE-31-P before and after treatment changes may help you and your patient understand how the changes have affected their life.

 

 

Quality of Life in Epilepsy (QOLIE-31)

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, which is 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 THEY feel.

There are 31 questions about your patient's health and daily activities. Have them answer every question by circling the appropriate number (1, 2, 3...). If they are unsure about how to answer a question, please have them give the best answer they 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 patient. Completing the QOLIE-31 before and after treatment changes may help you and your patient understand how the changes have affected their life.

 

qolie_31.pdf

QOLIE_31_permission.pdf 

Quality of Life in Epilepsy-Patient-Weighted (QOLIE-10-P)

The QOLIE-10-P is a brief survey of health-related quality of life for adults with epilepsy. [Adolescents (ages 11-17 years) should complete the QOLIE-AD-48, designed for that age group.] There are 10 questions about health and daily activities, one question about how much distress the person feels about problems and worries related to epilepsy, and a review of what is most bothersome. This questionnaire should be completed only by people with epilepsy (not a relative or friend) because no one else knows how THEY feel.

Instruct patients to answer every question by circling the appropriate number (1, 2, 3...). Indicate that if the person is unsure about how to answer a question, give the best answer you can and write a comment or explanation on the side of the page. These notes may be useful for discuss the QOLIE-10-P at visits. Completing the QOLIE-10-P before and after treatment changes may help both patient and doctor understand how the changes have affected the patient's life.

 

 

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 THEY feel.

There are 48 questions (in two parts) about your patient's health and daily activities. Ask your patient to answer every question by circling the appropriate number (1, 2, 3...). The first part asks about your patient's general health. The second part asks about the effects of your patient's epilepsy and antiepileptic medications. Please have them answer every question by circling the appropriate number (1, 2, 3, 4, 5). Even if some questions look similar, have your patient answer every question. If they are not sure about how to answer a question, please have them give the best answer they can. They may write notes in the margin to explain their feelings. These notes may be useful if you discuss the QOLIE-AD-48 with your patient. Completing the QOLIE-AD-48 before and after treatment changes may help you and your patient understand how the changes have affected your patient's life.

 

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 to have them. There are 11 questions in three sections asking about events before, during, and after typical seizures.

Please have your patient describe their MOST COMMON TYPE OF SEIZURE when answering the questions. If they are unsure about how to answer a question, please have them give the best answer they 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 patient. Completing the SSQ before and after treatment changes may help you and your patient understand how the changes have affected their life.

 

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