Quality of Life in Epilepsy Inventory (QOLIE-31)
A 31-item self-reported quality-of-life scale for people with epilepsy.
By Claire White
- Self-administered. Also given by interview in research.
- 31 items. 30 sit in 7 subscales, and one overall health item is reported on its own.
- Subscale and total scores run from 0 to 100; higher scores indicate better quality of life.
- Free. RAND publishes the questionnaire and the scoring manual and does not charge for either.
Psychometrics
Total-score coefficients from the Turkish validation of the QOLIE-31 (Mollaoğlu et al., 2015), in 148 adults with epilepsy. Higher is better.
What does the QOLIE-31 measure?
The QOLIE-31 covers seven health-related quality-of-life domains that matter to people with epilepsy. Seizure worry captures fear of the next seizure. Overall quality of life is a global rating. Emotional well-being covers mood and distress. Energy and fatigue, cognitive functioning, medication effects, and social functioning complete the set. Driving sits inside social functioning, which the RAND scoring manual calls work, driving, and social limits. A thirty-first item asks for a rating of overall health and is reported on its own.
| Subscale | Items |
|---|---|
| Cognitive functioning | 6 |
| Seizure worry | 5 |
| Emotional well-being | 5 |
| Social functioning | 5 |
| Energy and fatigue | 4 |
| Medication effects | 3 |
| Overall quality of life | 2 |
The QOLIE-31 is the short form of the 89-item QOLIE-89, drawn from the same field study of 304 adults at 25 US seizure clinics.
What does a QOLIE-31 score mean?
Subscale and total scores run from 0 to 100, where higher means better quality of life. The total is a weighted average of the seven subscales rather than a simple mean, using weights published in the RAND scoring manual, so the subscales do not contribute equally.
There are no published severity bands. Nothing in the literature marks a score as normal or impaired, so the number is read against the same person's earlier score or against a study mean for a comparable group. What is published is how much change counts. In 136 adults with difficult to control focal epilepsy, the smallest change patients themselves called important was 11.8 points on the total. In three placebo-controlled lacosamide trials in treatment-resistant focal seizures, the estimate was about 5 points. The gap reflects the different populations and methods, so the relevant threshold depends on which one your situation resembles.
The score captures burden that seizure counts miss, including medication side effects, fatigue, and the social cost of not driving. It is reference information for the care team, tracked over time.
How the QOLIE-31 is administered
- Administered by
- Self-administered. Given by interview in some research settings.
- Equipment
- The questionnaire and the RAND scoring manual
- Cost
- Free to take here.
- Published by
- RAND
- Age range
- Adults. Developed and validated in adults with epilepsy.
- Available languages
- US English, with cross-cultural translations into Danish, Dutch, German, Canadian French, French, Italian, Spanish, Swedish, and UK English
Which conditions is the QOLIE-31 used for?
Related instruments
- EQ-5DThe generic companion. Epilepsy trials run it alongside the QOLIE-31 so results compare across conditions
- Montreal Cognitive Assessment (MoCA)A brief cognitive screen, when the cognitive functioning subscale is the one that drops
- EORTC QLQ-C30The same design applied to cancer. Subscales plus a summary score
- Parkinson's Disease Questionnaire (PDQ-39)The same design applied to Parkinson's disease
QOLIE-31 questions, answered
How is the QOLIE-31 scored?
Each answer is converted to a 0 to 100 scale where higher is better. A subscale score is the average of its converted items. The total is a weighted average of the seven subscale scores, using weights published in the RAND scoring manual, so the subscales do not contribute equally. The thirty-first item, a rating of overall health, is reported on its own and is not part of the total.
How many items does the QOLIE-31 have?
31. Thirty of them sit in seven subscales: cognitive functioning with 6 items, seizure worry with 5, emotional well-being with 5, social functioning with 5, energy and fatigue with 4, medication effects with 3, and overall quality of life with 2. The thirty-first is a single overall health rating, scored separately. Driving is covered inside the social functioning subscale, which the RAND manual calls work, driving, and social limits.
What is a good QOLIE-31 score?
The literature publishes no agreed severity bands, so there is no threshold that separates good from poor. The number is read against the same person's earlier score, or against the mean for a comparable group in a study. Two anchor studies have estimated the smallest change that patients themselves call meaningful. In 136 adults with difficult to control focal epilepsy it was 11.8 points on the total, and in three lacosamide trials in treatment-resistant focal seizures it was about 5 points.
Is the QOLIE-31 free?
Yes. It is free to take here. The questionnaire and its scoring manual are published by RAND, which asks that the survey be cited.
Who can administer the QOLIE-31?
It is a self-report questionnaire, so the person with epilepsy completes it. Research teams sometimes read the items aloud and record the answers instead, which is how the Turkish validation collected its data.
Does the QOLIE-31 diagnose epilepsy?
No. It measures how epilepsy is affecting daily life and produces reference information for you and your care team. Diagnosis rests on clinical assessment.
Evidence, psychometrics and provenance
Developed by the QOLIE Development Group. The 89-item inventory came first, published in 1995 from a field study of 304 adults with epilepsy at 25 US centres. The 31-item short form followed in 1998, with translations into nine other languages. RAND publishes both the questionnaire and the scoring manual.
- Internal consistency by subscale
- α 0.67 to 0.84 (Mollaoğlu et al., 2015)
- Test-retest by subscale
- r 0.74 to 0.88 over two weeks, 30 people (Mollaoğlu et al., 2015)
- Development sample
- 304 adults with epilepsy at 25 US seizure clinics (Cramer et al., 1998)
References
- 1.Cramer JA, Perrine K, Devinsky O, Bryant-Comstock L, Meador K, Hermann B. Development and cross-cultural translations of a 31-item quality of life in epilepsy inventory. Epilepsia. 1998;39(1):81-88.
- 2.Devinsky O, Vickrey BG, Cramer J, Perrine K, Hermann B, Meador K, Hays RD. Development of the quality of life in epilepsy inventory. Epilepsia. 1995;36(11):1089-1104.
- 3.Mollaoğlu M, Durna Z, Bolayir E. Validity and reliability of the Quality of Life in Epilepsy Inventory (QOLIE-31) for Turkey. Noro Psikiyatr Ars. 2015;52(3):289-295.
- 4.Wiebe S, Matijevic S, Eliasziw M, Derry PA. Clinically important change in quality of life in epilepsy. J Neurol Neurosurg Psychiatry. 2002;73(2):116-120.
- 5.Borghs S, de la Loge C, Cramer JA. Defining minimally important change in QOLIE-31 scores: estimates from three placebo-controlled lacosamide trials in patients with partial-onset seizures. Epilepsy Behav. 2012;23(3):230-234.
- 6.RAND Corporation. Quality of Life in Epilepsy Inventory (QOLIE-89 and QOLIE-31). Survey instrument and scoring manual.
This assessment uses a validated instrument and is reference information, not a diagnosis.