Disease-related knowledge of patients with chronic regional pain syndrome.
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.


CONCLUSIONS
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.
Brunner
Florian
F
Department of Physical Medicine and Rheumatology, Balgrist University Hospital, Forchstrasse 340, 8008 Zurich, Switzerland. florian.brunner@balgrist.ch
Gymesi
Adrian
A
Kissling
Rudolf
R
Bachmann
Lucas M
LM
D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D020918:Complex Regional Pain Syndromes / Q000175:diagnosis* / Q000523:psychology; D004522:Educational Status; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic; D010865:Pilot Projects; D011795:Surveys and Questionnaires; D055815:Young Adult