Skip to contents
In This Issue:
A thank you note from a young woman recently diagnosed with lupus was one of several affirmations that Candace Feldman’s community outreach effort and research had made an impact.
Last spring, Feldman, MD, a fellow in BWH’s Rheumatology, Immunology and Allergy Department, her mentor, Karen Costenbader, MD, co-director of the BWH Lupus Center, and Melanie Zibit, research project manager, organized educational forums and focus groups for 57 women from Roxbury, Dorchester and Mattapan. Their goal was to gain insight into how to improve health care for women living with systemic lupus erythematosus (SLE) in medically underserved communities. On Nov. 5, Feldman presented her findings in Chicago at the American College of Rheumatology/Allied Rheumatic Health Professionals Scientific Meeting.
“The women were eager to improve their medical care and the care of newly-diagnosed women,” said Feldman. “I was especially excited by the enthusiasm of a number of women who approached me during these events to express their willingness to serve in a leadership role in the development of a future intervention.”
During the focus groups, participants were asked to provide feedback on different interventions for improving lupus health care. Many of the women thought that a lupus health passport would be most helpful for those with multiple health care providers, since doctors may not always have access to shared medical records.
The pocket-sized book would contain educational and personal health information, such as emergency contacts, a medication list and blood test results. Patients could carry the passport to their medical appointments to share with their doctors.
The women also thought that a peer support network would be helpful. The proposed program would pair a woman with lupus with a newly diagnosed woman to help obtain appropriate lupus medical care, provide companionship and help cope with feelings of isolation.
Feldman says that the next step is to develop a pilot program, which will most likely include the development of a peer support network.
“We hope to work further with the lupus support groups and with the women who expressed the desire to participate in leadership roles,” said Feldman. “By improving the support and health education women with chronic diseases receive, we hope to improve their overall health outcomes.”