Evaluation of a mail-delivered, print-format, self-management program for persons with systemic sclerosis

摘要

Patient self-management programs usually require participants to attend group sessions, which can be difficult for individuals with mobility issues. In addition, many programs are not disease specific. The purpose of this study was to evaluate the effects of a mail-delivered self-management program for individuals with scleroderma (SSc). The program consisted of a workbook and exercise DVD that provided information on medical aspects of the disease, dysphagia, fatigue management, advocacy, activities of daily living, oral hygiene, skin and wound care, psychosocial changes, exercises, and other features of the condition. Participants provided feedback on the effects of the self-management program by responding to questions on demographic and six self-report questionnaires, keeping a health log, and participating in a program evaluation interview. A total of 49 participants completed the program and returned the postintervention questionnaires. Participants consistently reported that the program was easy to use. Depression, fatigue, and pain decreased, and hand function, self-efficacy for controlling pain, and self-efficacy "other" improved; however, the only statistically significant change was in self-efficacy for pain. This is the first study to develop and assess the effects of a mail-delivered format for self-management for people with SSc. A self-management program should help individuals with SSc develop self-management strategies to manage this complex disease and advocate for themselves to promote better health.