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Informing Digital Programs for Lupus Self-Management Education: A Systematic Scoping Review.

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  • 1Lupus Foundation of America, Washington, DC.

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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.

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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.