RESUMEN
OBJECTIVE: The aim of this study was to investigate patients' knowledge of the most salient features of complex regional pain syndrome and to identify patient characteristics associated with the patients' level of knowledge. METHODS: Questionnaire interview of 101 patients with complex regional pain syndrome in Switzerland (mean age 54 years, 77% female). A questionnaire about patients' disease-related knowledge was developed and piloted. The level of knowledge was defined by a consensus process among clinical experts and a patient. The questions were based on expert consensus about the minimum knowledge a person affected with complex regional pain syndrome should have. RESULTS: Only 6 patients (6%) reached the minimum medical knowledge. The mean score for all participants was 7.6 points out of a total score of 11 points (range 3-11, SD 2.1). The scores were slightly higher among patients with higher education (apprenticeship, vocational school +0.38 (95% confidence interval (CI); -0.59 to 1.34: p=0.44), university entrance diploma +1.12 (95% CI-0.16 to 2.49: p=0.08), university diploma, advanced technical college +2.36 (95% CI 1.11-3.61: p<0.001)) compared with mandatory school, and among those with professional medical backgrounds +1.13 (95% CI 0.06-2.20: p=0.04). Most patients received information from their caregivers and wanted to know more about therapy or general aspects of the condition. CONCLUSION: Many patients with complex regional pain syndrome do not have the minimum knowledge of their disease as defined by clinical experts. Physicians should be aware that patients expect to receive disease-related information primarily from their caregivers. In particular, patients wanted more information about therapy and general aspects of the illness.