Rationale/Objective/Aims: Despite advances within the field of systemic lupus erythematosus (SLE), many people living with SLE spend too much time feeling terrible due to exhaustion, pain, and brain fog. This not only frustrates patients, but also frustrates rheumatologists who continue to hear stories of ongoing fatigue, pain, brain fog and see patients disabled, unable to work, and struggling to care for their families. Out of this frustration, our team took a step back to hear directly from our patients about what caused their daily suffering. What we found has led to our development of the Type 1 & 2 SLE Model to understand the connection – and sometimes lack of connection – between the symptoms of SLE and inflammation. We define Type 1 SLE as the signs and symptoms that rheumatologists typically treat best with immunosuppression, including arthritis, cutaneous lupus, and lupus nephritis. We define Type 2 SLE as the symptoms most commonly reported by patients, including fatigue, myalgias, and brain fog. Based on our data from patient surveys and interviews, we believe there are two types of Type 2 SLE. Intermittent Type 2 SLE occurs in patients with fluctuations in Type 2 symptoms that change with Type 1 SLE activity – for example, they tend to feel more exhausted when they also have a lot of joint inflammation. Persistent Type 2 SLE occurs in about 1/3 of our patients with ongoing fatigue, pain, and brain fog even when their rheumatologists can’t find any inflammation on their body and in their blood.

We know from prior research and our recent patient interviews that Type 2 SLE symptoms – regardless of being Intermittent or Persistent – are the main reason for disability and limited quality of life. Once we identified these two sub-groups, or “endotypes,” of Type 2 SLE, we sought remedies. We have united with two teams at Duke with extensive experience helping patients with chronic conditions take control of their health. The Center for Personalized Health Planning has created a whole-health centered program that empowers patients to set and meet their health goals, whether the goal is to take medication more regularly, become more active, develop purpose- driven work, or connect more with family. We will use the foundation of this program to develop Whole Health Empowerment for Endotypes of Lupus (WHEEL), under the guidance of Dr. Tamara Somers, a psychologist with over a decade of experience creating and testing behavioral health programs for pain management in patients.

The WHEEL program will include several essential features that our patient consumers have emphasized: (1) small group-based, allowing people with SLE to connect with each other; (2) conducted over video-conference to ensure the greatest number of people possible can have access; and (3) emphasis on whole health strategies to enable each person to address their specific barriers to improved quality of life. Our experience caring for patients with SLE informs our decision to split the WHEEL program into two separate groups, one for Intermittent and the other for Persistent Type 2 SLE. We know the lived experience of these two groups is different and patients in each endotype have different manifestations of SLE; we suspect that different strategies are needed to target gaps in quality of life. As the program is focused on empowering people with SLE to understand and take control of their SLE, it is essential the patients receive the messages that are most appropriate for their SLE endotype.

LRP Focus Area Addressed: The WHEEL program directly targets the quality of life of people living with SLE by empowering patients with both Persistent and Intermittent Type 2 SLE to take control of their whole health.

Patients This Research Will Help: The WHEEL program will help patients who experience limitations in their quality of life due to Type 2 SLE symptoms; within our clinic, this includes 77% of patients with SLE. The program will be appropriate to almost everyone with a diagnosis of SLE, as the health coach and patient will develop shared goals based on the challenges, symptoms, medications, and priorities of the patient.

Potential Clinical Applications/Benefits/Risks: We are designing the WHEEL program so it can be delivered to people living with SLE across the country, even in communities without an SLE expert. It poses minimal risks to the participants, as it empowers people to set realistic, feasible goals that address the components of their life that are their highest priority. While an important part of WHEEL will be identifying strategies to improve medication adherence, there will be no medication prescriptions or medical procedures as part of this program.

Projected Time to Patient-Related Outcome and Near-Term Impact on Lupus Patient Quality of Life: Based on the success of the program on which the WHEEL program is built, we expect participants to start feeling better after the first session, and for this impact to last beyond the sessions due to the skills gained to create lasting behavior change. Each session will include activities designed to create immediate changes in quality of life, including social connections with people with a shared experience to mindfulness activities to decrease anxiety. We expect improvements in quality of life as participants work towards their personal health goals through improved physical health and the empowerment that comes from taking back control of their body.