Systemic lupus erythematosus (SLE) is a serious autoimmune disease characterized by a wide range of symptoms that can dramatically impact quality of life (QoL). Among the most severe and disabling of these symptoms are fatigue, chronic pain, and brain fog. The relationship of these symptoms to autoimmune inflammation is unclear, complicating disease management and impairing communication between patients and providers.
To characterize better symptoms experienced by patients with SLE, we performed studies to correlate changes in patient-reported SLE symptoms with provider-reported levels of SLE inflammatory disease activity. These studies provided evidence for distinct patterns of disease that led us to develop the Type 1 & 2 SLE Model. In this schema, Type 1 SLE activity involves autoimmune-driven inflammation of various tissues and organs and includes arthritis, cutaneous lupus, and lupus nephritis; Type 2 SLE activity includes the most common patient-reported symptoms of fatigue, myalgia, and brain fog.
The Duke Center for Personalized Health Care is working as consulting collaborators with Duke Rheumatology and Immunology to fill a critical gap in designing care models that are oriented towards delivering ‘whole-person’ care that empowers individuals with Type 1 & 2 SLE to better self-manage their health.
Aim 1: Measure the distinct limitations in QoL and potential utility of therapies for people living with either Intermittent or Persistent Type 2 SLE.
Aim 2: Develop the Whole Health Empowerment for Endotypes of Lupus (WHEEL) program.
Aim 3: Determine the feasibility, acceptability, and outcome patterns of quality of life efficacy of the WHEEL program in a pilot randomized controlled trial.
The study team hypothesizes patients’ QoL will improve when they are able to practice a personalized health plan that they develop to optimally address their distinct SLE endotype. This hypothesis is supported by our prior work demonstrating two distinct endotypes of Type 2 SLE, and the data supporting the value of the PHP-SMA approach in improving QoL in both endotypes. The objective of this study is to develop and test SLE-endotype-specific programs that empower participants to create and practice their personalized health plan.
Our long-term goal is to improve the QoL of people living with SLE by distinguishing patients based on the characteristics of their disease and developing tailored interventions to meet their distinct needs.