Effective disease self-management for patients requires a patient-provider partnership, and an educational session at ACR Convergence 2020 offered practical steps for providers to encourage lupus patients to succeed at self-management.
“Disease self-management is a proven way to improve quality of life and clinical outcomes for people with chronic disease,” said Victoria P. Werth, MD, during the session Tools and Techniques for Patients’ Self-management of Lupus and Lupus Nephritis. “Successful self-management requires patient engagement, empowerment, and knowledge-building.”
The session, which is available for on-demand viewing for ACR Convergence 2020 registered attendees until March 11, 2021, also featured Irene Blanco, MD, fellowship program director and associate dean for diversity enhancement, Albert Einstein College of Medicine, and Cristina Drenkard, MD, PhD, associate professor, Emory University.
Dr. Werth, professor of dermatology and medicine, University of Pennsylvania School of Medicine, said that physicians can support the self-management goals for patients with lupus by addressing patient concerns and also making the effort to connect them to trusted resources and programs that can address their needs.
Patients have different levels of health literacy and self-confidence, and everybody learns at a different pace, Dr. Werth said, so it’s important to match the patient to the program. She highlighted three programs developed with cooperative funding from the CDC: The National Resource Center on Lupus, based on a 2015 needs assessment survey; Take Charge, a weekly email geared toward those newly diagnosed with lupus; and SELF (Strategies to Embrace Living with Lupus Fearlessly), an online management program based on a proven behavioral change model.
Dr. Drenkard explained the lupus nephritis self-management resources available through the ACR’s The Lupus Initiative.
“The healthcare team is uniquely qualified to guide patients to the right resources,” Dr. Drenkard said. “However, providers face time constraints, and for self-management resources clinicians are uncertain where to refer patients to obtain materials.”
The website hosts two sets of resources. EMPOWERED is designed for patients and caregivers. EMPOWER is designed for clinical and non-clinical professionals.
EMPOWER uses best-practice recommendations from rheumatologists, nephrologists, and other healthcare professionals, Dr. Drenkard said. The training materials are built around four steps: Understanding self-management and its benefits, recognizing the clinical healthcare professional’s role in self-management, using the patient’s medical history as a guide, and sharing resources and staying up to date on the latest lupus nephritis news and best practices.
Dr. Blanco noted that patients with lupus and other chronic illnesses are living longer, disease management cannot take place solely in acute care setting, and complicated treatment regimens require significant patient input and savvy for optimal success. In addition, patient care now involves more shared decision-making, which makes increased and improved self-management education essential.
Education programs can be tailored in many ways to meet patients’ needs—individual or group settings, in-person or online teaching, high-tech or low-tech methods—but no matter the program, any program must account for a patient’s real-life experience, Dr. Blanco said.
Common barriers include lack of time, staffing, or funding to explore self-management education opportunities. Another barrier involves patients who feel like they have a challenging relationship with their provider and feel rushed or unheard when they visit.
“We know that intentionality matters,” Dr. Blanco said. “As long as the healthcare provider really adopts and goes all in in terms of teaching self-management, that’s going to lead to the most adoption on the part of the patients.”