“Fun activities, such as prom night, help patients forget about lupus for an evening,” Ms. Rose says. “Designers donate dresses and teens get glammed up. Their physician becomes their personal shopper for the day, and patients see that their doctor is human, too.”
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Explore This IssueApril 2017
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Lupus Steering Committee
A steering committee comprising a team of rheumatologists who specialize in SLE and APS management, physician–scientists who study these diseases, nurses and social workers meets monthly to evaluate and expand the center’s programs.
“We review ongoing research projects, patient educational programs and community engagement events,” Dr. Salmon says. “We fund pilot grants in SLE and APS by HSS staff and trainees, discuss and suggest treatment guidelines for specific manifestations of SLE and develop quality initiatives to monitor our delivery of general and lupus-specific medical care. Social work team members are invaluable for projects related to patient-reported outcomes, patient educational programs and community outreach activities.”
Rheumatologists and social workers at HSS, in collaboration with patients, have developed unique interdisciplinary, evidence-based strategies to achieve better outcomes in managing the care of SLE patients. In fact, some of their programs are one-of-a-kind in the nation.
By offering a variety of patient-centered and culturally tailored services, healthcare providers at HSS believe they are helping SLE patients to deal with the many challenges they face.
Karen Appold is a medical writer in Pennsylvania.
Interdisciplinary Research Initiatives
As part of their interdisciplinary approach to improve care for systemic lupus erythematosus (SLE) patients, rheumatologists and social workers at Hospital for Special Surgery (HSS) work together to conduct research that benefits these patients.
For example, staff from the two disciplines have co-authored and presented abstracts at conferences about the impact of their joint care from both the medical and psychosocial perspectives. “We’ve published about HSS’ SLE programs and about issues that concern both rheumatologists and social workers,” says Jillian Rose, LCSW, MPH, assistant director, Community Engagement, Diversity & Research.
A current project is to create a mobile health (mHealth) application (app) to help patients better manage challenges related to having lupus. “To develop the app, a rheumatologist worked with the social work team to conduct a series of focus groups in which SLE patients discussed what would help them provide better care for themselves and what they saw as their greatest challenges,” says Jane Salmon, MD, a rheumatologist at HSS and director of the Lupus and Antiphospholipid (APS) Center of Excellence. Questions explored challenges due to having SLE, current coping strategies, how an SLE app could help with disease self-management, app format and design, and priorities for app content.1 Ninety-eight percent of participants said they would use an app to help manage lupus.1