A Qualitative Analysis of Patient Perspectives and Preferences in Lupus Management to Guide Lupus Guidelines Development - Summary - MDSpire

Exploring Patient Insights and Preferences in Lupus Care to Inform the Development of Treatment Guidelines

  • By

  • Shivani Garg

  • Izzy Hartel

  • Lisa R. Sammaritano

  • Anca Askanase

  • Bonnie L. Bermas

  • Maria Dall'Era

  • Alí Duarte-García

  • Victoria P. Werth

  • Brad Rovin

  • Reem A. Mustafa

  • Amy S. Turner

  • Bené Williams

  • Brian L. Ung

  • Hiya Bhavsar

  • Monique C. Gore-Massy

  • Nahirannette Pulido

  • Natacha Guerrero

  • Natalie M. Smith

  • Wambui Machua

  • Linda T. Hiraki

  • Mary Beth Son

  • July 1, 2026

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Objective:

To highlight key themes from patient experiences and perspectives to inform the development of treatment guidelines for lupus nephritis (LN) and systemic lupus erythematosus (SLE), emphasizing the role of patient engagement.

Approach:
  • Study Design: A cross-sectional qualitative study using content analysis of Patient Panel meetings to inform ACR LN and SLE guideline development.
  • Participants: 28 patients diagnosed with SLE or LN were invited to participate in two separate Patient Panels, ensuring diverse representation.
  • Patient Panel Meetings: Facilitated discussions were held to gather patient insights, with structured guidance and breaks to enhance engagement.
Key Findings:
  • Three thematic domains emerged: treatment and monitoring; clinical communication; and improving transparency and information sharing.
  • Patient engagement is essential for aligning treatment recommendations with patient values and priorities.
Interpretation:

The findings emphasize the importance of incorporating patient perspectives into clinical practice recommendations.

Limitations:
  • The study did not require institutional review board approval as it used de-identified transcripts.
  • Sample size may limit the generalizability of findings.
Conclusion:

The study highlights the value of patient engagement in developing guidelines for lupus care.

Sources:

Original Source(s)

A Qualitative Analysis of Patient Perspectives and Preferences in Lupus Management to Guide Lupus Guidelines Development

  • by Shivani Garg, Izzy Hartel, Lisa R. Sammaritano, Anca Askanase, Bonnie L. Bermas, Maria Dall'Era, Alí Duarte-García, Victoria P. Werth, Brad Rovin, Reem A. Mustafa, Amy S. Turner, Bené Williams, Brian L. Ung, Hiya Bhavsar, Monique C. Gore-Massy, Nahirannette Pulido, Natacha Guerrero, Natalie M. Smith, Wambui Machua, Linda T. Hiraki, Mary Beth Son

  • July 1, 2026

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