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Abstract
Purpose Systemic lupus erythematosus (SLE) is a complex and heterogeneous disease whose efficient management requires coordinated interactions among patients, physicians, and multiple medical specialists. Translating the highly technical clinical data of lupus into understandable concepts for patients, their families, and individuals without expertise in SLE is a serious challenge. Thus, we aimed to create a visual that facilitates communication and assessment of the overall health status of SLE patients.
Methods We selected representative and useful clinical criteria for SLE and elaborated them as graphical features of an attractive visual. Using R programming language, we developed a script that automatically transposes clinical data into this visualization. We asked SLE patients from a local cohort about the relevance, usefulness, and acceptability of this visual tool in a pilot survey conducted online.
Results The visual representation is a butterfly, the emblematic symbol of lupus, and incorporates shades of purple, the color of lupus awareness. The innovative Butterfly features eleven key clinical criteria: age, sex, organ damage (Systemic Lupus International Collaborating Clinics Damage Index), disease activity (SLE Disease Activity Index 2000), comorbidities (Charlson Comorbidity Index), intake of antimalarials, prednisone, immunosuppressants and biologics, as well as physical- and mental-health-related quality of life (component summary scores from the 36-Item Short Form Survey). Each Butterfly provides the health portrait of a SLE patient from any given follow-up visit. The script we developed streamlines the generation and compilation of the many Butterflies that can compose a patient’s clinical journey. All survey participants agreed that they would like to use the Butterfly to visualize the course of their SLE over time, and nine out of ten agreed it should be used during their clinical follow-up visits (figure 1).
Conclusions We created an innovative tool that graphically summarizes the global health status of SLE patients and monitors their illness trajectories over time. In addition to facilitating patient-physician communication and helping patients take ownership of their condition, we believe this visual tool has the potential to enhance healthcare coordination and raise awareness about SLE.
Butterflies’ assortments presenting the illness course of one SLE patient
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