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

Area of Science:

• Rheumatology
• Patient Education
• Health Psychology

Background:

• Systemic sclerosis (SSc), also known as scleroderma, is a chronic autoimmune disease requiring comprehensive patient management.
• Effective patient education programs are crucial for improving self-efficacy and managing SSc symptoms.
• Existing SSc patient education resources may not fully address all patient needs.

Purpose of the Study:

• To develop and evaluate the content and structure of a patient education program for systemic sclerosis (SSc).
• To assess the suitability of the program's content based on patient health assessments and opinions.
• To explore the use of self-efficacy theory as a foundation for SSc patient education.

Main Methods:

• A multidisciplinary rheumatology team developed the program content.
• Health assessments included medical examinations, symptom evaluation, and measures of function and self-efficacy.
• Patient opinions and self-efficacy theory guided curriculum development for six women with SSc.

Main Results:

• Patient-reported needs were met by professional medical information, but skin care and pain management require further curriculum development.
• Participants expressed satisfaction with the program and peer interactions.
• Goal-setting was identified as an unfamiliar but potentially beneficial task for patients.

Conclusions:

• The pilot multidisciplinary SSc education program successfully addressed key topics and facilitated peer support.
• Further research with larger study groups is necessary to evaluate the program's impact and refine outcome measures.
• The program provides a foundation for enhancing SSc patient self-management and quality of life.