A variety of small population surveys provide data for the development of resource information on HRQOL scores. The time has come to pool these data, to expand the amount of information on patients with low seizure
frequency, and to make these population "norm" data available for use as benchmarks. The largest amount of data has been collected with the QOLIE-31 [9], but these can readily be converted to QOLIE-10 [10] scores to
provide data on two brief, self-administered questionnaires. The QOLIE-10 [10] can be completed and scored (sum of all responses) by the patient before seeing the doctor who can use it as a screening tool. As with any new
"laboratory" test the more the doctor sees the test results, the more meaningful and useful the data will become. It takes a while to learn the most appropriate range for a new laboratory test or the most appropriate range of
HRQOL scores for a new instrument. When a patient is treated for low red blood cell count, the doctor looks for an increase in hemoglobin. Similarly, when treating for uncontrolled seizures, the neurologist should use
HRQOL scores as an index of treatment results in addition to the traditional counting of seizures. HRQ OL is more than a reflection of seizures. Even when seizures are stopped, the HRQOL scores may indicate that burdens remain and require attention.
2. Research implications
The message for behavior researchers is that we need to organize the increasing amount of information available about HRQOL to make it useful for clinicians.
I encourage someone to apply for a grant to compile the available HRQOL data toward creation of a global database. In the interim, I encourage investigators who have reported on HRQOL instruments to include them in a central list. The first edition of this compendium
was developed under the auspices of the International League Against Epilepsy (ILAE) Subcommission on Outcomes in Epilepsy to provide documentation of the original sources of information about instruments [11]. This compendium was designed to be a resource for all
researchers who need to search the literature. Use it to learn what has already been accomplished, and to determine what needs to be done to advance the field of |
HRQOL research. It is important for researchers to share cross-cultural translations, population data, comparisons among instruments, and other data. The QOLIE instruments are available at no cost to further research in this area.
References
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Au A, Li P, Chan J, et al. Predicting the quality of life in Hong Kong Chinese adults with epilepsy. Epilepsy Behav 2002;3:50–7. |
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Perrine K, Hermann BP, Meador KJ, et al. The relationship of neuropsychological functioning to quality of life in epilepsy. Arch Neurol 1995;52:997–1003. |
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Devinsky O, Vickrey BG, Cramer JA, et al.Developmen t of the quality of life in epilepsy (QOLIE) inventory. Epilepsia 1995;36:1089–104. |
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Hermann BP, Whitman S. Behavioral and personality correlates of epilepsy: a review, methodological critique, and conceptual model. Psychol Bull 1984;95:451–97. |
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Vickrey BG, Hays RD, Rausch R, Sutherling W, Engel J, Brook RH. Quality of life of epilepsy surgery patients as compared with outpatients with hypertension, diabetes, heart disease, and/or epression. Epilepsia 1994;35:597–607. |
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Cramer JA, Ben Menackem E, French J. Treatment options for refractory epilepsy: New medications and vagal nerve stimulation. Epil Res 2001;47:17–25. |
| [9] |
Cramer JA, Perrine K, Devinsky O, Bryant-Comstock L, Meador K, Hermann BP. Development and cross-cultural translation of a 31-item quality of life questionnaire (QOLIE-31). Epilepsia 1998;39:81–8. |
| [10] |
Cramer JA, Perrine K, Devinsky O, Hays RD, Hermann B, Meador K.A brief questionnaire to screen for quality of life in epilepsy: the QOLIE-10. Epilepsia 1996;40:114–21. |
| [11] |
Cramer JA for the ILAE Sub Commission on Outcome Measurement in Epilepsy (C. Camfield, H. Carpay, C. Helmstaedter, J. Langfitt, K.Malmgren, S.Wiebe). Principles of health-related quality of life: assessment in clinical trials. Epilepsia 2002;43:1084–95. |
Joyce A.Cramer*
Department of Psychiatry
Yale University School of Medicine
West Haven, CT 06516-2770, USA
E-mail address: joyce.cramer@yale.edu
* Fax: 1-203-937-3468
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