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4 - Quality of life issues for women with epilepsy

from Part I - The woman with epilepsy

Published online by Cambridge University Press:  02 November 2009

By
Joyce A. Cramer
Edited by
Martha J. Morrell  and
Kerry L. Flynn
Joyce A. Cramer
Affiliation:
Yale University School of Medicine, VA Connecticut Health Care System, 950 Campbell Avenue, West Haven, CT 06516, USA
Martha J. Morrell
Affiliation:
Columbia University, New York
Kerry L. Flynn
Affiliation:
Columbia-Presbyterian Cancer Center, New York
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Summary

Joyce Cramer is a well-known researcher in the fields of epilepsy and psychiatry and holds an appointment at Yale University. Her recent work has focused on the quality of life for people with chronic illness, especially those with epilepsy. She was one of the developers of the Quality of Life in Epilepsy Inventory (QOLIE), which allows people with epilepsy to discuss life concerns by means of a detailed survey. She has challenged the health-care field to consider the well-being of the whole person with epilepsy rather than having a narrow focus on seizure control alone.

In this chapter, Ms Cramer discusses how quality of life may be disrupted by epilepsy and provides suggestions about how to communicate your quality of life concerns to your health-care team. Caring for the whole person works best when the person with epilepsy is an active partner in her care.

MJM

What is ‘quality of life’?

Health-related quality of life (HRQOL) has been defined by the World Health Organization as a state of complete physical, mental, and social well-being, and not merely the absence of disease or infirmity. It can also be defined as the functional effect of an illness and its consequent therapy on a patient, as perceived by the patient. Within the many aspects of HRQOL, an individual person perceives a problem when there is a difference between actual and desired health status. When the gap between where we are compared to where we would like to be is wide, HRQOL is low.

Keywords

antiepileptic drugsdisease-specific conditionsepilepsyhealth-care teamvocational capacityquality of lifepsychological condition
Type
Chapter
Information
Women with Epilepsy
A Handbook of Health and Treatment Issues
 , pp. 35 - 44
Publisher: Cambridge University Press
Print publication year: 2003

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References

Cramer JA. Quality of life for people with epilepsy. Neurologic Clinics: Epilepsy II: Special Issues, ed. O Devinsky. WB Saunders Company, New York, 1994; 12:1–13
Cramer JA. Compliance and quality of life. In Epilepsy and Quality of Life, ed. MR Trimble, WE Dodson. Raven Press, New York, 1994, pp. 49–63
Cramer JA. Quality of life assessments in epilepsy. In Quality of Life and Pharmacoeconomics in Clinical Trials, ed. B Spilker. Lippincott-Raven Publishers, Philadelphia, 1996, pp. 909–18
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):81–8Google Scholar
Cramer, JA, Perrine, K, Devinsky, O, Meador, K. A brief questionnaire to screen for quality of life in epilepsy: The QOLIE-10. Epilepsia 1996; 37:577–82Google Scholar
Devinsky, O, Vickrey, BG, Perrine, K. Development of an instrument of health-related quality of life for people with epilepsy. Epilepsia 1995; 36:1089–104Google Scholar
Jacoby, A. Epilepsy and the quality of everyday life: findings from a study of people with well-controlled epilepsy. Soc Sci Med 1992; 34:657–66Google Scholar
Vickrey, BG, Hays, RD, Graber, J, Rausch, R, Engel, J, Brook, RH. A health-related quality of life instrument for patients evaluated for epilepsy surgery. Med Care 1992; 30:299–319Google Scholar

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