At the Hospital for Special Surgery (HSS), New York, rheumatologists and social workers have found that an interdisciplinary approach to care for systemic lupus erythematosus (SLE) patients improves the overall patient experience.
“Our goal is to help patients navigate the complex healthcare system,” says Jillian Rose, LCSW, MPH, assistant director, Community Engagement, Diversity & Research. “We help patients co-create a solid care plan that suits their needs and lifestyle. Even though their illness may be out of control, we want patients to feel more in control and at the center of their care.”
The HSS offers more lupus support and educational programs than any other hospital in the U.S. These programs are an integral part of the Department of Social Work Programs and work in close partnership with the Lupus and Antiphospholipid (APS) Center of Excellence at HSS. The center was established to provide individualized, state-of-the-art care, support and education to patients with lupus and APS.
“Our close relationship with social workers makes these goals achievable,” says Jane Salmon, MD, rheumatologist and director of the center. Patients are given access to expert physicians, social workers, research studies, nursing services and educational programs.
New SLE patients meet with a social worker to assess their emotional concerns and practical needs. Rheumatologists actively refer patients to support programs, knowing that individuals with SLE can be confronted by many psycho-social issues.
“We build programs around patients’ needs, which are determined by frequent needs assessments and what is important to them,” Ms. Rose says. “Culturally tailored programs in English, Spanish and Chinese target patients in different communities.”
“Going to HSS is the best resource that I have,” says Ivette Salmon, a 59-year-old lupus patient from Queens, N.Y. “Sometimes, I blame everything on my lupus, but I’ve learned that issues can also arise from other conditions caused by lupus. It’s helpful to talk about challenges with someone who has faced the same problems.”
Given the broad range of issues that arise in the care of these patients, social workers also attend appointments with lupus patients on a case-by-case basis and at the patient’s request. “Social workers will articulate any issues the patient has expressed, such as the inability to pay for prescriptions, which can be challenging for patients to bring up on their own,” Ms. Rose says. “While a physician may not think a $10 co-pay for a medication is significant, for some patients it is. Factors such as a patient’s inability to pay for medicines or difficulty getting transportation can lead to adherence issues and can derail their treatment plan.”