Developing a Continuous Quality Improvement Assessment Using a Patient-Centered Approach in Optimizing Systemic Lupus Erythematosus Disease Control

Abstract

Systemic lupus erythematosus (SLE) is a multi-organ, autoimmune disease in which patients lose self-tolerance and develop immune complexes which deposit systemically causing multi-organ damage and inflammation. Patients often experience unpredictable flares of symptoms with poorly identified triggers. Literature suggests exogenous exposures may contribute to flares in symptoms. An online pilot survey was marketed globally through social media to self-reported SLE patients with the goal to identify specific subpopulations who are susceptible to disease state changes based on analyzed exogenous factors. The pilot survey was promoted for two weeks, 80 respondents fully completed the survey and were included in statistical analysis. Descriptive statistical analysis was performed on de-identified patient surveys and compared to previous literature studies reporting known or theorized triggers in the SLE disease state. The pilot survey identified similar exogenous triggers compared to previous literature, including antibiotics, increasing beef intake, and metal implants. The goal of the pilot survey is to utilize similar questions to develop a detailed internet-based patient interactive form that can be edited and time stamped as a method to promote continuous quality improvement assessments. The ultimate objective of the platform is to interact with SLE patients from across the globe longitudinally to optimize disease control and improve quality of care by allowing them to avoid harmful triggers.

Investigating the role of health information technology in the control and management of Systemic Lupus Erythematosus (SLE): a systematic review

“…The oldest study using information technology to monitor lupus was also conducted in this country [ 38 ]. Cohort studies [ 20 , 22 , 31 , 32 ] (n = 4), pilot studies [ 28 , 30 , 38 , 39 ] (n = 4), and randomized controlled trials (RCT) (n = 4) [ 36 , 40 ] were the most frequent types of studies in this review. Table 1 shows the information extracted from the studies.…”

“…Figure 2 shows the most widely used health information technologies used in the control, management, and monitoring of lupus. About 75 percent of the studies used web-based technologies (n = 13) [ 22 , 24 , 25 , 28 , 29 , 32 , 33 , 35 , 37 – 39 , 41 , 42 ] and telephones (n = 5) [ 20 , 26 , 27 , 30 , 31 ] to control and manage lupus. The rest of the studies used mobile-based App (n = 3) [ 21 , 34 , 36 ] and wearable devices (n = 2) [ 23 , 40 ] to control and manage the disease.…”

“…As it is shown in Tables 1 and 2 , most of these technologies were conducted in the United States (n = 18) [ 20 – 37 ]. UK [ 38 , 39 ], Canada [ 40 ], Thailand [ 41 ], and Brazil [ 42 ] were other countries that focused on technologies related to lupus control and management. The United States was the largest producer of web-based technologies (n = 9) [ 22 , 24 , 25 , 28 , 29 , 32 , 33 , 37 , 41 ], telephones (n = 5) [ 20 , 26 , 27 , 30 , 31 ], and mobile-based Apps (n = 3) [ 21 , 34 , 36 ].…”

Insights From Twitter Conversations on Lupus and Reproductive Health: Protocol for a Content Analysis

“…Lupus is a chronic autoimmune disease that can affect any part of the body (skin, joints, or vital organs) [ 1 , 2 ]. Estimates from recent population-based studies in the United States report the prevalence of systemic lupus erythematosus (SLE), the most common form of lupus, to be between 60 and 80 per 100,000, although this prevalence varies greatly by age, gender, race, and ethnicity.…”