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Informing Digital Programs for Lupus Self-Management Education: A Systematic Scoping Review
Katherine Carpenter1, Sarah Gilman2, Melissa French1
1Lupus Foundation of America, Washington, DC.
Arthritis Care & Research
|May 13, 2024
Summary
Digital self-management (SM) education programs show promise for chronic conditions like lupus. While most programs improve symptoms, more research is needed to understand user needs and outcomes for lupus patients.
Area of Science:
- Digital health interventions
- Chronic disease management
- Health education
Background:
- Digital self-management (SM) education programs are increasingly used for chronic conditions.
- Understanding their characteristics and effectiveness is crucial for optimizing lupus care.
Purpose of the Study:
- To describe the characteristics, content, and effectiveness of digital SM education programs for lupus and similar chronic conditions.
- To identify gaps and inform improvements for future lupus-focused digital SM programs.
Main Methods:
- A scoping review of bibliographic databases was conducted for articles published between May 2012 and April 2022.
- Searches included lupus and seven other chronic conditions.
- Data extraction involved two independent reviewers and collaborative charting by four team members.
Main Results:
- 16 articles representing 12 unique digital SM programs met inclusion criteria.
- Programs covered epilepsy, fibromyalgia, multiple sclerosis, lupus, and rheumatoid arthritis.
- Most programs were internet-based, asynchronous, and demonstrated statistically significant symptom improvement.
Conclusions:
- This review summarizes the current landscape of digital SM education programs for lupus and related conditions.
- Further research is needed in lupus to address gaps in digital SM education needs, user experience, and outcome evaluation.
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