Cross-cultural adaptation and use of the epilepsy psychosocial effects scale: Comparison between the psychosocial effects of chronic epilepsy in Sweden and the United Kingdom

Purpose: To establish Swedish weightings for the Epilepsy Psyche-Social Effects Scale (EPSES) and examine differences between Sweden and the U.K. in attitudes toward chronic epilepsy. Methods: After translation and back-translation of the EPSES into Swedish, weightings were established through a paired comparison study in which 24 epilepsy professionals participated. The EPSES was then given to a hospital-based sample of 57 patients with chronic epilepsy and the results compared with a British sample matched for age, sex, and frequency of seizures. Results. in the professional judgments of the EPSES statements, there were statistically significant differences in only four of 32 statements. Attitudes to employment, to medication, and to fear of seizures were considered more serious in the U.K., whereas social isolation was considered more a problem in Sweden. Patient attitudes to chronic epilepsy were found to be largely similar in the U.K. and Sweden; however, attitudes to employment, to the future, and to fear of seizures were significantly more a problem for patients in the U.K. Conclusions: The results indicate a great similarity in the interpretation of problems as measured by the EPSES in the U.K, and in Sweden. The differences in attitudes found are discussed in relation to economic and legislative differences between the two countries. Social as well as cultural differences should be taken into account when using standardized questionnaires. It is suggested that culturally specific weightings should be calculated and that these should be reevaluated at regular intervals.