QUALITY OF LIFE IN EPILEPSY - QOLIE-31 (Version 1.0)

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QUALITY OF LIFE IN EPILEPSY - QOLIE-31 (Version 1.0) US English QOLIE-31 Copyright 1993, RAND. All rights reserved. The QOLIE-31 was developed in cooperation with Professional Postgraduate Services. Today s Date Patient s Name / / mm dd yy Age: years INSTRUCTIONS 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 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 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. This copy QOLIE-31 is provided by the Epilepsy Therapy Project, who bring you www.epilepsy.com, your trusted source for epilepsy information. We wish you success in living your life with epilepsy. 1. Overall, how would you rate your quality of life? (Circle one number on the scale below) 10 9 8 7 6 5 4 3 2 1 0 Best Possible Quality of Life Worst Possible Quality of Life (as bad as or worse than being dead)

These questions are about how you FEEL and how things have been for you during the past 4 weeks. For each question, please indicate the one answer that comes closest to the way you have been feeling. How much during the past 4 weeks... (Circle one number on each line) All Most A good bit of the Some A little None 2. Did you feel full of pep? 3. Have you been a very nervous person? 4. Have you felt so down in the dumps that nothing could cheer you up? 5. Have you felt calm and peaceful? 6. Did you have a lot of energy? 7. Have you felt downhearted and blue? 8. Did you feel worn out? 9. Have you been a happy person? 10. Did you feel tired? 11. Have you about having another seizure? 12. Did you have difficulty reasoning and solving problems (such as making plans, making decisions, learning new things)? 13. Has your health limited your social activities (such as visiting with friends or close relatives)?

14. How has the QUALITY OF YOUR LIFE been during the past 4 weeks (that is, how have things been going for you)? (Circle one number) Very well: could hardly be better 1 Pretty good 2 Good & bad parts about equal 3 Pretty bad 4 Very bad: could hardly be worse 5 Copyright Trustees of Dartmouth College

The following question is about MEMORY. (Circle one number) Yes, a great deal Yes, somewhat Only a little No, not at all 15. In the past 4 weeks, have you had any trouble with your memory? Circle one number for how often in the past 4 weeks you have had trouble remembering or how often this memory problem has interfered with your normal work or living. All Most A good bit of the Some A little None 16. Trouble remembering things people tell you The following questions are about CONCENTRATION problems you may have. Circle one number for how often in the past 4 weeks you had trouble concentrating or how often these problems interfered with your normal work or living. All Most A good bit of the Some A little None 17. Trouble concentrating on reading 18. Trouble concentrating on doing one thing at a The following questions are about problems you may have with certain ACTIVITIES. Circle one number for how much during the past 4 weeks your epilepsy or antiepileptic medication has caused trouble with... A great deal A lot Somewh at Only a little Not at all 19. Leisure (such as hobbies, going out) 5 20. Driving 5

The following questions relate to the way you FEEL about your seizures. (Circle one number on each line) Very fearful Somewhat fearful Not very fearful Not fearful at all 21. How fearful are you of having a seizure during the next month? Worry a lot Occasionally worry Don t worry at all 22. Do you worry about hurting yourself during a seizure? 1 2 3 Very Somewhat Not very Not at all 23. How are you about embarrassment or other social problems resulting from having a seizure during the next month? 24. How are you that medications you are taking will be bad for you if taken for a long? For each se PROBLEMS, circle one number for how much they bother you on a scale of 1 to 5 where 1 = Not at all bothersome, and 5 = Extremely bothersome. Not at all bothersome Extremely bothersome 25. Seizures 5 26. Memory difficulties 5 27. Work limitations 5 28. Social limitations 5 29. Physical effects of antiepileptic medication 30. Mental effects of antiepileptic medication 5 5

31. How good or bad do you think your health is? On the thermometer scale below, the best imaginable state of health is 100 and the worst imaginable state is 0. Please indicate how you feel about your health by circling one number on the scale. Please consider your epilepsy as part of your health when you answer this question.