Background/Purpose: Although the mortality rate of lupus has decreased with improvement of treatment options, it remains high compared to non-SLE mortality. The factors that contribute to this increased mortality are heterogonous including both disease and patient related factors. Several studies have shown the discordance between physician and patient agendas regarding SLE care. Physicians have a greater focus on screening for and treating SLE-related organ involvement, whereas patients are often more concerned with symptoms of burden which often leads to frustration on both sides. This disparity in priorities, along with diminishing time availability of the physician for patient counseling and overall poor health literacy of patients have significantly affected treatment efficacy and adherence. The Lupus Wellness Program aims to serve as an intervention to bridge the care gap.

Methods: SLE patients participated in a Lupus Wellness Program in which they met with a rheumatology nurse practitioner in a one-to-one session every 2 to 12 weeks (depending on preference and availability of the patient) for a total of about 4 sessions. The program followed a curriculum with written information and materials given to the participants at each visit. Forty-seven patients with lupus completed the program. All patients were given a pre-program and post-program knowledge assessment. We measured cardiovascular risk factors (blood pressure, inflammatory markers such as ESR and CRP, prednisone dosage and bodyweight) of the patient 1 year before starting the program and 1 year after the completion of the program. We also compared health practices over the last 5 years of the participants of the program (intervention group) to a control group of lupus patients who had not participated in the lupus program. Our outcome measurements were 1)rate of flu vaccination, 2) rate of pneumonia vaccinations, 3) cholesterol screening and 4) access to MyChart (patient portal to electronic medical record).

Results: Our study indicates that lupus patients who completed the Lupus Wellness Program had about 80% improvement in knowledge assessment between their pre and post program assessments. Patients who participated in the program within the first 3 years after their diagnosis of lupus tended to have greater improvements in their knowledge assessment compared to those who started the program 4 or more years after diagnosis. Participants had better control in blood pressure and inflammation markers and used less amount of prednisone, but less changes on body weight, as compared to before the intervention.  Compared to non-participants, participants of the program received more PNA and Flu vaccinations, and signed up to use MyChart more often.

Conclusion: Our study indicates that usage of an individualized educational program for lupus patients may serve as valuable tool to help to improve long term health outcomes in this population, especially when implemented early on in the disease course. With the increasing demand and decreasing time availability of rheumatology physicians, an advanced practice provider may serve as valuable asset to bridge the gap in patient care.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/improving-patient-centered-care-by-utilizing-lupus-wellness-program/