Jennifer Ra

Washington University School of Medicine
Project: Virtual Support: The Key to Bringing Social Support into the Home for Patients with SLE
Mentor:  Alfred H.J. Kim, MD, PhD

Summary from Ra’s Research Proposal

This project assesses a possible solution to the problem of deteriorating social support systems that comes with systemic lupus erythematosus (SLE) within the lupus population in St. Louis, Missouri. The disease’s paroxysmal course, with unexpected and sudden episodes of flare activity, and the lack of readily noticeable symptoms cause acquaintances of those with SLE to grossly underestimate the impact of the disease. That leads to isolation and loneliness among lupus patients. This study focuses on the use of virtual resources (i.e. cell phones and online forums) as a form of social support. Virtual support will provide easy access to social groups with the comforts of staying at home. This project will be the first effort in the St. Louis region to rebuild social support for SLE patients.

Structured interviews were conducted within the patient cohort at the Washington University Lupus Clinic. The questions consisted of a mixture of multiple choice and open-ended questions that assessed internet access, current use of online platforms and media, and patients’ opinions of using avenues of virtual support (e.g. Facebook, online forums, and text messaging) for their SLE treatment. Currently, our research team is in the process of analyzing this data and preparing the writing of a manuscript as well. In addition, a literature review is being conducted on other internet-based programs that were effective in other diseases such as arthritis, scleroderma, and chronic pain.

Learn more about research funded by the Lupus Foundation of America

For more information on Lupus Foundation on America’s granted research, please contact Ashley Marion at marion@lupus.org.