Development and evaluation of a patient education program for persons with systemic sclerosis (scleroderma).

OBJECTIVE: To develop and evaluate the contents and disposition of a systemic sclerosis (SSc; scleroderma) patient education program.

METHODS: Six women with SSc constituted the study group. Contents of the course were decided by the rheumatology team and were based on health assessments of the study participants made through medical examinations, measures of subjective symptoms, disability, physical and psychological function, and perceived self-efficacy, as well as the patients' opinions. The self-efficacy theory was used as the main theoretical basis for the education program.

RESULTS: Both self-report and observer-scored measurements of disease impact and function were required to create the contents of the course. The patients reported that the professional medical information met their needs, although skin care and pain are topics that need additional work in the curriculum. The participants were satisfied with the program and the patient contacts, but found goal-setting to be an unfamiliar task.

CONCLUSION: This pilot study of a multidisciplinary SSc education program fulfilled the general goals stated concerning the topics included and provided the opportunity for SSc patients to meet others with the same diagnosis. A larger study group is needed in order to analyze the effects of the course and the measurements used.