Abstract
Purpose: To examine between-country differences in health-related quality of life (HRQOL) of adults with epilepsy across a large number of European countries. Methods: Self-completion postal questionnaire sent to large sample of adults with epilepsy, recruited from epilepsy support groups or epilepsy outpatient clinics. The questionnaire was developed in English and translated. Back-translations from each language were checked for accuracy. The questionnaire sought information on clinical and socio-demographic details, and contained a number of previously validated scales of psychosocial well-being (the SF-36, the perceived impact of epilepsy scale, and a feelings of stigma scale). Results: Controlling for socio-demographic and clinical characteristics, significant between-country differences were found in scores on the perceived impact of epilepsy scale, on seven of the eight SF-36 domains, and on the feelings of stigma scale. Respondents in Spain and the Netherlands fared consistently better, whilst those in France fared poorest, compared to those in other countries in terms of the various HRQOL measures used. Conclusion: Several possible reasons for the cross-cultural differences in HRQOL are proposed. Clearly, there is no single explanation and there may also be reasons which we have overlooked. This study emphasises the need for further comprehensive research in order that the position of people with epilepsy in different countries be more thoroughly understood in the social context.
Similar content being viewed by others
References
Baker GA, Jacoby A. Assessment of quality of life in children and adolescents with epilepsy. In: Aldenkamp AP, Dreifuss FE, Renier WO, Suurmeijer TPBM (eds), Epilepsy in Children and Adolescents. Boca Raton: CRC Press, 1995: 279–289.
Jacoby A. Assessing quality of life in patients with epilepsy. PharmacoEconomics 1996; 9(5): 399–416.
Cramer JA. Quality of life for people with epilepsy. Neurologic Clinics 1994; 12(1): 1–13.
Collings JA. International di.erences in psychosocial well-being: a comparative study of adults with epilepsy in three countries. Seizure 1994; 3(3): 183–190.
Dodrill CB, Beier R, Kasparick M, Tacke I, Tacke U, Tan S. Psychosocial problems in adults with epilepsy: comparison of ®ndings from four countries. Epilepsia 1984; 25(2): 176–183.
Cartwright A. Health Surveys: In Practice and in Potential. London, King Edward's Hospital Fund, 1983.
Ware JE, Sherbourne CD. The MOS 36-item Short-Form Health Survey (SF-36). I. Conceptual framework and item selection. Med Care 1992; 30(6): 473–483.
Jenkinson C, Coulter A, Wright L. Short form 36 (SF 36) health survey questionnaire: normative data for adults of working age. BMJ 1993; 306: 1437–1440.
Baker GA, Jacoby A, Buck D, Stalgis C, Monnet D. Quality of life of people with epilepsy: a European study. Epilepsia 1997; 38(3): 353–362.
Baker GA, Frances P, Middleton E, et al. Initial de-velopment, reliability and validity of a patient-based adverse drug event scale. Epilepsia 1994; 35: 20 Abstract (suppl 7).
Jacoby A, Baker GA, Smith DF, Dewey M, Chadwick DW. Measuring the impact of epilepsy: the develop-ment of a novel scale. Epilepsy Res 1993; 16: 83–88.
Jacoby A. Felt versus enacted stigma: a concept revisited. Soc Sci Med 1994; 38: 269–274.
SPSS Inc. SPSS Base System User's Guide for SPSS 4.0. Chicago, Illinois, 1993.
Jacoby A, Buck D, Baker G, McNamee P, Graham-Jones S, Chadwick D. Uptake and costs of care for epilepsy: Findings from a UK regional study. Epilepsia 1998; 39(7): 776–786.
Jacoby A, Baker G, Steen N, et al. The clinical course of epilepsy and its psychosocial correlates: Findings from a UK community study. Epilepsia 1996; 37: 148–161.
Rodin E, Rennick P, Dennerll R, Lin Y. Vocational and educational problems of epileptic patients. Epilepsia 1972; 13(1): 149–160.
Fraser RT, Clemmons D, Trejo W, Temkin NR. Program evaluation in epilepsy rehabilitation. Epilepsia 1983; 24(6): 734–746.
Fisher RS, Parsonage M, Beaussart M, et al. Epilepsy and driving - an international perspective. Epilepsia 1994; 35(3): 675–684.
Steinmeyer H. (1993) Rechtsfragen bei Epilepsie [Legal issues in epilepsy]. In: Nissen G, ed. Anfallskrankheiten aus interdisziplinarer Sicht. Bern, Switzerland: Huber, 1993: 229–235.
Craig A, Oxley J. Social aspects of epilepsy. In: Laid-law J, Richens A, Oxley J (eds), A Textbook of Epilepsy. 3rd edition. Edinburgh: Churchill Livingstone, 1988: 566–610.
Brown SW. What resources? Addressing the needs of the epilepsy community. Seizure 1995; 4(3): 207- 210.
Betts T, Smith K. New departures in epilepsy care: an epilepsy liaison service. Seizure 1994; 3(4): 301–308.
Canger R, Cornaggia C. Public attitudes toward epi-lepsy in Italy: Results of a survey and comparison with U.S.A. and West German data. Epilepsia 1985; 26(3): 221–226.
Author information
Authors and Affiliations
Rights and permissions
About this article
Cite this article
Buck, D., Jacoby, A., Baker, G.A. et al. Cross-cultural differences in health-related quality of life of people with epilepsy: Findings from a European study. Qual Life Res 8, 675–685 (1999). https://doi.org/10.1023/A:1008916326411
Issue Date:
DOI: https://doi.org/10.1023/A:1008916326411