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Agreement between self reports and proxy reports of quality of life in epilepsy patients

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Abstract

Agreement between self reports and proxy reports of quality of life was examined in a sample of 292 patients with epilepsy and their designated proxies. Patients and proxies completed an 89-item Quality of Life Inventory (QOLIE-89), with the items rephrased for the proxy. Results reveal moderate correlations (product-momentr ranging from 0.29 to 0.56 for 17 multi-item scales) between self reports and proxy reports. Agreement was good for measures of function that are directly observable and relatively poor for more subjective measures. Mean scale scores were significantly different between patients and proxies for only five of 17 multi-item scales. Proxy respondents systematically reported better functioning than did patients in three scales assessing cognitive functioning (allp<0.001). By contrast, patients reported more positive health perceptions and less seizure distress than proxies. Patient educational attainment correlated inversely with degree of disagreement between patient and proxy reports for six of the 17 QOL scales and for the overall score. In addition, proxy educational attainment correlated positively with agreement for four scales. This study indicates that for group level comparisons, proxy respondents can be substituted for adults with epilepsy having low to moderate seizure frequency. However, for individual level assessments proxies should be used with caution.

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Authors and Affiliations

  1. Social Policy Department, RAND, 1700 Main Street, 90407-2138, Santa Monica, CA

    R. D. Hays, B. G. Vickrey & K. Spritzer

  2. UCLA, Los Angeles, CA

    R. D. Hays & B. G. Vickrey

  3. Epi-Care Center, University of Tennessee, Memphis, TN

    B. P. Hermann

  4. New York University Hospital for Joint Diseases, New York, NY

    K. Perrine & O. Devinsky

  5. VA Medical Center, West Haven, CT

    J. Cramer

  6. Yale University School of Medicine, New Haven, CT

    J. Cramer

  7. Medical College of Georgia, Augusta, GA, USA

    K. Meador

Authors
  1. R. D. Hays
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  2. B. G. Vickrey
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  3. B. P. Hermann
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  4. K. Perrine
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  5. J. Cramer
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  6. K. Meador
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  7. K. Spritzer
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  8. O. Devinsky
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Additional information

Data collection was funded by an unrestricted educational grant from Wallace Laboratories. Preparation of this article was supported in part by RAND from its internal research funds. We thank Jim Tebow and Jacqueline Campbell for secretarial support. The opinions expressed are those of the authors and do not necessarily reflect the views of the sponsor, RAND, UCLA, or other institutions affiliated with this project. Requests for the QOLIE-89 should be directed to: Contracts Office, RAND, 1700 Main Street, Santa Monica, CA 90407-2138, USA.

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Hays, R.D., Vickrey, B.G., Hermann, B.P. et al. Agreement between self reports and proxy reports of quality of life in epilepsy patients. Qual Life Res 4, 159–168 (1995). https://doi.org/10.1007/BF01833609

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