Background/Purpose: Systemic sclerosis (SSc) is an autoimmune connective tissue disease with serious implications for quality of life.  The disease is challenging due to the variable course and potential for disability and morbidity.  Persons living outside major metropolitan areas may be emotionally and geographically isolated from support groups, knowledgeable rheumatologists and other health professionals, and disease self-management education.  We did a small study of 5 months duration to convert a previously developed self-management program to an internet format and pilot test the effects of  the  program on self-efficacy, health efficacy, management of care, pain, fatigue, functional ability and depression.

Methods:

The intervention program consisted of an internet program with modules on scleroderma, coping, self-advocacy, fatigue and energy conservation, activities of daily living, mouth and teeth care, digestive tract (including dysphagia), Raynaud’s phenomenon, and exercises for the face, hands, arms and legs.  Participants logged on to a password protected website and proceeded through the modules and learning activities at their own pace over 10 weeks.   Participants were encouraged to log on to the discussion board, an interactive component of the website, and respond to questions posted for each module.   Participants completed pre and post intervention questionnaires on perceived self efficacy (CDSES), health efficacy (heiQ), ability to manage care (PAM), functional disability (HAQ-DI), depression (CES-D), and pain and fatigue VAS’s.  T-tests analyzed differences in scores between the pre and post intervention questionnaires. Participants also completed an 8 question evaluation form about their satisfaction with the web site, program content, discussion boards and learning activities. 

Results:   Twenty one participants, recruited from the National Scleroderma Foundation website and a state chapter, completed baseline measures.  Thirteen participants completed the study and completed post intervention measures.  There were no demographic differences between people who participated vs. did not participate in the internet program. Of the participants who completed the program, the mean age was 52 years with mean disease duration of 7 years and mean education level of 16 years.   Eighty four percent were female, 92% Caucasian, and 77% were married. Significant improvements were seen in mean scores for self-efficacy (t = 2.31; p = .039),   ability to manage care (t = 2.82; p = .016), and health efficacy (t = 2.28; p = .042).  Scores for pain and fatigue, functional ability and depression improved but not significantly. The evaluation of the program revealed mean scores ranging from 4.1 (action plans contributed to learning) to 4.9 (information presented clearly) on a 5 point scale.

Conclusion: The preliminary findings suggest that a self-management program delivered using an internet format can lead to statistically significant improvements in self efficacy, health efficacy, and ability to manage care.  These results need to be confirmed with a larger randomized controlled trial with a longer follow-up period.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/taking-charge-of-systemic-sclerosis-a-pilot-study-of-an-internet-self-management-program/