Skip to main content
SpringerLink
Log in

Advances in methods for assessing the impact of epilepsy and antiepileptic drug therapy on patients' health-related quality of life

  • Published:
Quality of Life Research Aims and scope Submit manuscript

Abstract

We studied 31 previously validated and newly developed generic and epilepsy-specific scales to evaluate their usefulness for assessing the impact of epilepsy and anti-epileptic drug (AED) therapy on health-related quality of life (HRQOL). Included were the MOS SF-36 Health Survey, additional measures of mental health, cognition, epilepsy-specific perception of control, behavioural problems, distress, worries and experiences, the Liverpool Epilepsy Impact and Seizure Severity scales, and a patient-completed symptom checklist. Questionnaires were completed twice by 136 patients on AED therapy in a multicentre study in the UK. Validity was assessed in relation to disease severity, defined as time since last seizure, and to patient-reported symptoms. Statistical analyses to estimate the contribution of HRQOL information of each scale relative to that of others were conducted. The 171-item questionnaire could be completed by out-patients with epilepsy with good data quality. With few exceptions, generic and epilepsy-specific measures satisfied psychometric tests of hypothesized item groupings and scale score reliability (internal consistency and test-retest reliability) and differentiated well between groups of patients differing in time since last seizure and in symptom impact, regardless of time since last seizure. However, scales differed widely in their validity in discriminating between groups of patients known to differ clinically. The SF-36 Role Physical scale best discriminated among groups differing in disease severity. The epilepsy-specific Mastery, Impact, Experience, Worry, Distress, and Agitation scales were among the 10 best measures in discriminating among groups differing in disease severity. Generic measures, especially measures of social and role functioning and mental health, were best at differentiating groups of patients differenting in symptom impact. Recommendations are offered for concepts and specific scales most likely to be useful in future studies of the HRQOL burden of epilepsy and the HRQOL benefits of AED therapy.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Livingston S. Psychosocial aspects of epilepsy. In: British Epilepsy Association, ed.Perspectives on Epilepsy 80/81. Berkshire: British Epilepsy Association 1981: 17–27.

    Google Scholar 

  2. The Roper Organization.Living with Epilepsy: Report of a Roper Poll of Patients on Quality of Life. New York, 1992.

  3. Hermann BP. Quality of life in epilepsy.J Epilepsy 1992;5: 153–165.

    Google Scholar 

  4. Ellwood PM. Outcomes management: A technology of patient experience (Shattuck Lecture).New Engl J Med 1988;318: 1549–1556.

    PubMed  Google Scholar 

  5. Slevin ML, Plant H, Lynch D, et al. Who should measure quality of life, the doctor or the patient?Br J Cancer 1988;57: 109–112.

    PubMed  Google Scholar 

  6. Geigle R, Jones SB. Outcomes measurement: A report from the front.Inquiry 1990;27: 7–13.

    PubMed  Google Scholar 

  7. Wilkin D, Hallam L, Doggett MA.Measures of Need and Outcome for Primary Health Care. Oxford: Oxford University Press, 1992.

    Google Scholar 

  8. Stewart AL, Ware JE, eds.Measuring Functioning and Well-Being. The Medical Outcomes Study Approach. Durham, NC: Duke University Press, 1992.

    Google Scholar 

  9. Temkin NR, Dikmen S, Machamer J, et al. General versus disease-specific measures: Further work on the Sickness Impact Profile for Head Injury.Med Care 1992;27:S44-S53.

    Google Scholar 

  10. Kantz ME, Harris WJ, Levitsky K, et al. Methods for assessing condition-specific and generic functional status outcomes after total knee replacement.Med Care 1992;30: MS240-MS252.

    PubMed  Google Scholar 

  11. Patrick DL, Erickson P.Health Status and Health Policy: Allocating Resources to Health Care. New York: Oxford University Press, 1993.

    Google Scholar 

  12. Patrick DL, Deyo RA. Generic and disease-specific measures in assessing health status and quality of life.Med Care 1989;27: S217-S232.

    PubMed  Google Scholar 

  13. Jacoby A, Johnson A, Chadwick DW, et al. Psychosocial outcomes of antiepileptic drug discontinuation.Epilepsia 1992;33: 1123–1131.

    PubMed  Google Scholar 

  14. Vickrey BG, Hays RD, Graber J, et al. A health-related quality of life instrument for patients evaluated for epilepsy surgery.Med Care 1992;30: 299–319.

    PubMed  Google Scholar 

  15. Devinsky O, Hays R, Vickrey B, et al. Development of a quality of life instrument.Neurology, 1994;44: A141.

    Google Scholar 

  16. Baker GA, Smith DF, Dewey M, et al. The initial development of a health-related quality of life model as an outcome measure in epilepsy.Epilepsy Res 1993;16: 65–81.

    PubMed  Google Scholar 

  17. Ware JE, Sherbourne CD. The MOS 36-Item Short-Form Health Survey (SF-36): I. Conceptual framework and item selection.Med Care 1992;30: 473–483.

    PubMed  Google Scholar 

  18. Ware JE, Snow KK, Kosinski M, et al.SF-36 Health Survey: Manual and Interpretation Guide. Boston: New England Medical Center, The Health Institute, 1993.

    Google Scholar 

  19. Jenkinson C, Wright L, Coulter A.Quality of Life Measurement in Health Care: A Review of Measures, and Population Norms for the UK SF-36. Oxford: Horgan Print Partnership, 1993.

    Google Scholar 

  20. Brazier JE, Harper R, Jones NMB, et al. Validating the SF-36 Health Survey Questionnaire: New outcome measure for primary care.Br Med 1992;305: 160–164.

    Google Scholar 

  21. Garratt AM, Ruta DA, Abdalla MI, et al. The SF-36 Health Profile: An outcome measure suitable for routine use within the NHS?Br Med J 1993;306: 1440–1444.

    Google Scholar 

  22. Jenkinson C, Coulter A, Wright L. The Short-Form 36 (SF-36) Health Survey Questionnaire: Normative data for adults of working age.Br Med J 1993;306: 1437–1440.

    Google Scholar 

  23. Davies AR, Ware JE.Measuring Health Perceptions in the Health Insurance Experiment. Santa Monica: RAND 1982; R-2711-HHS.

  24. Stewart AL, Hays RD, Ware JE. Health perceptions, energy/fatigue, and health distress measures. In: Stewart AL, Ware JE, eds.Measuring Functioning and Well-Being: The Medical Outcomes Study Approach. Durham, NC: Duke University Press, 1992.

    Google Scholar 

  25. Stewart AL, Ware JE, Sherbourne CD, et al. Psychological distress/well-being and cognitive functioning measures. In: Stewart AL, Ware JE, eds.Measuring Functioning and Well-Being: The Medical Outcomes Study Approach. Durham, NC: Duke University Press, 1992.

    Google Scholar 

  26. Weinstein MC, Berwick DM, Goldman PA, et al. A comparison of three psychiatric screening tests using Receiver Operating Characteristic (ROC) analysis.Med Care 1989;27: 593–607.

    PubMed  Google Scholar 

  27. Russell D, Peplau LA, Ferguson ML. Developing a measure for loneliness.J Pers Assess 1978;42: 290–294.

    PubMed  Google Scholar 

  28. Dupuy HJ. The psychological general well-being (PGWB) index. In: Wenger NK, Mattson ME, Furberg CD, Elinson J (eds).Assessment of Quality of Life in Clinical Trials of Cardiovascular Therapies. New York: Le Jacq, 1984.

    Google Scholar 

  29. Bergner M, Bobbitt RA, Carter WB, et al. The Sickness Impact Profile: Development and final revision of a health status measure.Med Care 1981;19: 787–805.

    PubMed  Google Scholar 

  30. Dohrenwend BP, Shrout PE, Egri G, et al. Nonspecific psychological distress and other dimensions of psychopathology: Measures for use in general population.Arch Gen Psychiatry 1980;37: 1229–1236.

    PubMed  Google Scholar 

  31. Pearlin L, Schooler C. The structure of coping.J Health Soc Behav 1978;19: 2–21.

    PubMed  Google Scholar 

  32. Jacoby A. Epilepsy and the quality of everyday life: Findings from a study of people with well-controlled epilepsy.Soc Sci Med 1992;34: 657–666.

    PubMed  Google Scholar 

  33. Smith D, Baker G, Davies G, et al. Outcomes of add-on treatment with lamotrigine in partial epilepsy.Epilepsia 1993;34: 312–322.

    PubMed  Google Scholar 

  34. Jacoby A, Baker B, Smith D, et al. Measuring the impact of epilepsy: The development of a novel scale.Epilepsy Res 1993;16: 83–88.

    PubMed  Google Scholar 

  35. Ware JE, Johnston SA, Davies-Avery A,et al. Conceptualization and Measurement of Health for Adults in the Health Insurance Study: Vol. III, Mental Health. Santa Monica, CA: Rand 1979; R-1978/3-HEW.

  36. Baker GA, Smith DF, Dewey M, et al. The development of a seizure severity scale as an outcome measure in epilepsy.Epilepsy Res 1991;8: 245–251.

    PubMed  Google Scholar 

  37. Likert RA. A technique for the measurement of attitudes.Arch Psychol 1932;140: 5–55.

    Google Scholar 

  38. Commission on Classification and Terminology of the International League Against Epilepsy (1981). Proposal for revised clinical and electroencephalographic classification of epileptic seizures.Epilepsia 1981;22: 489–501.

    Google Scholar 

  39. Commission on Classification and Terminology of the International League Against Epilepsy. Proposal for revised classification of epilepsies and epileptic syndromes.Epilepsia 1989;30: 389–399.

    Google Scholar 

  40. Ghiselli EE, Campbell JP, Zedeck S.Measurement Theory for the Behavioral Sciences. San Francisco: Freeman, 1981.

    Google Scholar 

  41. McHorney CA, Ware JE, Raczek AE. The MOS 36-Item Short-Form Health Status Survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs.Med Care 1993;31: 247–263.

    PubMed  Google Scholar 

  42. Ware JE, Kosinski M, Bayliss MS,et al. Comparison of methods for the scoring and statistical analysis of SF-36 Health Survey profiles and summary measures: Results from the Medical Outcomes Study.Med Care 1995 (in press).

  43. McHorney CA, Kosinski M, Ware JE. Comparisons of the cost and quality of norms for the SF-36 Survey collected by mail versus telephone interview: Results from a national survey.Med Care;32: 551–567.

  44. Helmstadter GC.Principles of Psychological Measurement. New York: Appleton-Century-Crofts, 1964.

    Google Scholar 

  45. Howard KI, Forehand GC. A method for correcting item-total correlations for the effect of relevant item inclusion.Educ Psychol Meas 1962;22: 731–735.

    Google Scholar 

  46. Cronbach LJ, Warrington WG. Time-limit tests: Estimating their reliability and degree of speeding.Psychometrika 1951;16: 167–188.

    PubMed  Google Scholar 

  47. Nunnally JC.Psychometric Theory. New York: McGraw-Hill, 1978.

    Google Scholar 

  48. Stevens J.Applied Multivariate Statistics for the Social Sciences. Hillsdale: Erlbaum, 1992.

    Google Scholar 

  49. Kim J-O, Mueller CW. Factor Analysis.Statistical Methods and Practical Issues. London: Sage, 1978.

    Google Scholar 

  50. Comrey AL, Lee HB.A First Course in Factor Analysis. Hillsdale: Erlbaum, 1992.

    Google Scholar 

  51. Liang MH, Larson MG, Cullen KE, et al. Comparative measurement efficiency and sensitivity of five health status instruments for arthritis research.Arthritis Rheum 1985;28: 542–547.

    PubMed  Google Scholar 

  52. McHorney CA, Ware JE, Lu JFR, et al. The MOS 36-Item Short-Form Health Survey (SF-36): III. Tests of data quality, scaling assumptions, and reliability across diverse patient groups.Med Care 1994;32: 40–66.

    PubMed  Google Scholar 

  53. Kerlinger FN.Foundations of Behavioural Research. New York: Holt, Rinehart and Winston, 1973.

    Google Scholar 

  54. Sechrest Lee. Incremental validity. In: Jackson DN, Messick S.Problems in Human Assessment. New York: McGraw-Hill Book Company, 1967.

    Google Scholar 

  55. Medical Outcomes Trust.How to score the SF-36 Health Survey. Boston: Medical Outcomes Trust, 1993.

    Google Scholar 

  56. Chaplin JE, Lasso RY, Shorvon SD, et al. National general practice study of epilepsy: The social and psychological effects of a recent diagnosis of epilepsy.Br Med J 1990;304: 1416–1418.

    Google Scholar 

  57. Kazis LE, Clark J, Miller DR,et al. A modified version of a short-form health survey for assessing health-related quality of life in veterans: The Veterans Health Study. In: AHSR & FHSR.Health Services Research: Implications for Policy, Management, and Clinical practice. Abstract book of the 11th Annual Meeting, 1994 June 12–14; San Diego, CA: 14–15.

  58. Baker GA, Francis P, Middleton A, et al. Development of a patient-based symptom checklist to quantify adverse events in persons receiving anti-epileptic drugs.Epilepsia 1993;34: 18.

    PubMed  Google Scholar 

  59. Ware JE. The status of health assessment 1994.Annu Rev Public Health 1994;16: 327–354.

    Google Scholar 

  60. Guyatt G, Feeny D, Patrick D. Issues in quality of life measurement in clinical trials.Controlled Clin Trials 1991;12: 81S-90S.

    PubMed  Google Scholar 

  61. Katz JN, Larson MG, Phillips CB, et al. Comparative measurement sensitivity of short and longer health status instruments.Med Care 1992;30: 917–925.

    PubMed  Google Scholar 

  62. Beaton DE, Bombardier C, Hogg-Johnson S. Choose your favorite tool: A comparison of the psychometric properties of five genetic health status instruments in workers with soft tissue injuries.Qual Life Res 1994;3: 50.

    Google Scholar 

Download references

Author information

Authors and Affiliations

  1. The Health Institute, New England Medical Center Box #345, 750 Washington Street, 02111, Boston, MA, USA

    A. K. Wagner, S. D. Keller, M. Kosinski & J. E. Ware Jr

  2. Walton Hospital, University Department of Neurosciences, Liverpool, UK

    G. A. Baker & D. W. Chadwick

  3. Center for Health Services Research, University of Newcastle Upon Type, UK

    A. Jacoby

  4. Schering-Plough Corporation, Kenilworth, NJ

    M. -A. Hsu

  5. School of Public Health, Harvard University, Boston, MA, USA

    J. E. Ware Jr

Authors
  1. A. K. Wagner
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. S. D. Keller
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. M. Kosinski
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. G. A. Baker
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. A. Jacoby
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. M. -A. Hsu
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. D. W. Chadwick
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. J. E. Ware Jr
    View author publications

    You can also search for this author in PubMed Google Scholar

Rights and permissions

Reprints and permissions

About this article

Cite this article

Wagner, A.K., Keller, S.D., Kosinski, M. et al. Advances in methods for assessing the impact of epilepsy and antiepileptic drug therapy on patients' health-related quality of life. Qual Life Res 4, 115–134 (1995). https://doi.org/10.1007/BF01833606

Download citation

  • Issue Date:

  • DOI: https://doi.org/10.1007/BF01833606

Key words

Search

Navigation