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Final Program


Schedule at a Glance
Legend
Program: Scientific Session
General Topic: ARP

Beyond the Silence: Unlocking Quality of Life Issues for Better Health Conversations with Vasculitis Patients

Tuesday, October 28, 2025
1:00 PM – 2:00 PM Central Time

    Moderator(s)

  • LK

    Leila Khalili, MSN, FNP, APRN

    Columbia University Medical Center
    New York, New York, United States

    Disclosure(s): UCB: Consultant (Terminated, May 2, 2024)

  • DM

    Donna McArthur, PhD, FNP, APRN

    Eosinophilic & Rare Disease Cooperative
    Tucson, Arizona, United States

    Disclosure(s): No financial relationships with ineligible companies to disclose

    • Session Coordinator(s)

  • Joshua Stefanik, PhD, PT

    Northeastern University
    Boston, Massachusetts, United States

    Disclosure information not submitted.

This robust panel focuses on the challenges patients with vasculitis and other rare diseases face in disclosing certain symptoms and health concerns to their healthcare providers. The discussion highlights issues such as embarrassment, denial, and fear of potential consequences as barriers to open communication between patients and their care team. When a provider is only offered a selection of information, they are operating with subpar data from which to develop a treatment plan. The panel, consisting of a couple patients, care partner, physician and social worker, will explore the challenges in creating a truly trusting environment in which patients do not withhold important information about QoL and the impact of disease. Attendees will develop strategies to create a trusting environment and ensure that the patient/provider partnership is functioning optimally. Additionally, attendees will learn underlying psychosocial factors that impact transparency and sharing. Finally, a survey of vasculitis patients will be presented to provide real-world examples and data about information being withheld that might impact treatment planning or patient engagement in plan follow through.

Learning Objectives:

  • Identify common symptoms and health concerns that vasculitis patients are often reluctant to disclose to their healthcare providers that may impact adherence to care plan or quality of life
  • Discuss the underlying reasons and psychosocial factors that contribute to patients' hesitation in discussing sensitive topics like body image, sexual dysfunction, cognitive changes, and sense of agency and independence
  • Generate a revised office visit practice that incorporates key components and strategies presented to build trust, open communication, and meaningful shared decision making thereby improving adherence

Presentations:

  • 1:00 PM – 1:30 PM Central Time
    What Your Patients Aren't Telling You: Patient Perspectives

    Speaker: Sarah Jones, MS, MPA (she/her/hers) – Eosinophilic & Rare Disease Cooperative

  • 1:30 PM – 2:00 PM Central Time
    What Your Patients Aren't Telling You: Rheumatologist Perspectives

    Speaker: Alicia Rodriguez-Pla, MD,PhD,RhMSUS,MPH,FACP – Sierra Pacific Arthritis and Rheumatology Centers