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Patient outcomes from implementing a shared decision-making aid for systemic lupus erythematosus: a prospective

Jasvinder A Singh1, Larry R Hearld2, Seth Eisen3

  • 1Medicine Service, Michael E DeBakey Veterans Affairs Medical Center, Houston, TX, USA; Department of Medicine, Baylor College of Medicine, Houston, TX, USA; Department of Medicine, University of Alabama at Birmingham, Birmingham, AL, USA.

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A new decision aid improved outcomes for systemic lupus erythematosus (SLE) patients, enhancing shared decision-making and communication. This tool is effective for all SLE manifestations and available as a free app.

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Area of Science:

  • Rheumatology
  • Digital Health
  • Patient-Centered Care

Background:

  • Systemic lupus erythematosus (SLE) patient decision-making data is limited.
  • Previous research indicated an evidence-based SLE decision aid improved decisional conflict for lupus nephritis.
  • This study assessed broader patient outcomes of implementing the SLE decision aid for disease management.

Purpose of the Study:

  • To evaluate the impact of an SLE patient decision aid on patient decisional conflict, shared decision making, and patient-provider communication.
  • To assess the perceived acceptability and feasibility of the decision aid in a real-world clinical setting.
  • To determine if outcomes persist over time.

Main Methods:

  • A prospective implementation study conducted in 15 US rheumatology clinics.
  • Adult patients with SLE viewed a computerized decision aid (full or lite version) via tablet, website, or app.
  • Validated surveys assessed decisional conflict, shared decision making, communication, acceptability, and feasibility at baseline, 3, and 6 months.

Main Results:

  • 1895 SLE patients were included; mean age 44.7 years, 93.3% female, 45.1% African American.
  • At baseline, patient outcomes were good/excellent: low decisional conflict (mean 19.5), high role preference matching (82.8%), good shared decision making (mean CollaboRATE 25.2), and strong communication (mean 82.2).
  • These positive outcomes remained consistent at 3- and 6-month follow-ups.

Conclusions:

  • The SLE patient decision aid demonstrates good to excellent patient outcomes, including shared decision making and feasibility.
  • Outcomes remained stable throughout the implementation period.
  • The decision aid is suitable for all SLE manifestations and accessible as the free ManageMyLupus smartphone app.