Informational Book for Patients Newly Diagnosed With Systemic Lupus Erythematosus

Abstract

Objectives/Hypothesis To provide a useful resource for patients newly diagnosed with SLE (Sys-temic Lupus Erythematosus). Methods Surveys were distributed to patients currently living with SLE via three rheumatology offices. All surveys were completed anonymously. Survey responses were combined with per-sonal patient anecdotes as well as medically focused questions and answers to create a com-plete educational piece under the genre of narrative medicine. Results Patient survey responses provide a variety of information for patients and clinicians. Low response rate encouraged the addition of supplemental sections in the final product in or-der to create a piece with a significant amount of patient-centered information. The format therefore changed with the addition of Doctor in Training sections, highlighting answers to commonly asked patient-centered questions on SLE as well as personal anecdotes building on the narrative medicine format. Significance The combination of patient survey responses, personal anecdotes, and ques-tion/answer sections unite to provide valuable information in a unique format to patients newly diagnosed with SLE. Specifically, the survey responses give future patients a variety of view-points and tips on how to handle living with lupus while the narrative