November 2025

RHEUMATOLOGY

PATIENT OUTCOMES FROM IMPLEMENTING A SHARED DECISION-MAKING AID FOR SLE

Shared decision-making is essential in managing systemic lupus erythematosus (SLE), yet tools to support patient choices have been limited. This prospective implementation study evaluated how an evidence-based decision aid impacts patient engagement and outcomes across diverse rheumatology clinics. Rosalind Ramsey-Goldman, MD, participated in the research published to The Lancet Rheumatology.

Background
  • Previous research showed that SLE decision aids reduced decisional conflict compared to standard pamphlets. This study assessed its real-world impact on patient outcomes.

Methods
  • Conducted in 15 rheumatology clinics across the United States
  • 1,895 adults with SLE participated
  • Decision aid delivered via tablet, website or smartphone app during clinic visits
  • Surveys at baseline, three months, and six months measured decisional conflict, shared decision-making, communication and perceived acceptability and feasibility of the decision aid.

Key findings
  • Patient outcomes were either good or excellent at the baseline visit after viewing the SLE patient decision aid, including preparation for decision making.
  • Low decisional conflict (mean score 19.5)
  • 82.8% matched with their preferred role versus their actual role in treatment decisions
  • High shared decision-making scores (CollaboRATE mean 25.2)
  • Strong patient–provider communication (mean score 82.2)
  • 81.4% found information balanced immunosuppressive drugs versus glucocorticoids
  • Positive outcomes persisted at three and six months

​Conclusion
  • The decision aid improved patient engagement and communication, with sustained benefits. It is suitable for all SLE manifestations and freely available as the ManageMyLupus app.
Rosalind Ramsey-Goldman, MD, DrPH, John P. Gallagher Research Professor of Rheumatology at Northwestern Medicine  

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