Background/Purpose: Patient autonomy is an integral part of the treatment process. For effective shared decision making (SDM) patients must fully understand their disease process, prognosis and treatment. Systemic lupus erythematosus (SLE) patients have significant challenges due to the complex pathophysiology of the disease, multiple treatment regimens, and heterogeneous manifestations including neurocognitive effects. Our prior study demonstrated that one third of the SLE patients did not recognize comorbidities of SLE and medication side effects. The aim of our current study is to use CollaboRATE, a validated SDM tool, to investigate the effectiveness of the SDM process in a subset of SLE patients at OSU.

Methods: Patients >18 years were recruited from The Ohio State University Lupus and Vasculitis Glomerulonephritis Clinic. Patient demographics are described in Table 1. After IRB approval, patients were contacted by phone and administered a 3 item multiple-choice validated CollaboRATE questionnaire that was graded on a 5 point Likert scale (0-4) (Table 1). Data was analyzed as an average score per question and a total sum (max 12 points). A top score was obtained by giving 1 point to individuals who gave the maximum possible response to all 3 questions, and 0 points to everything else.

Results: A total of 52 patients completed the questionnaire. The average score for question 1 was 3.1(+/-1), question 2 was 3.3 (+/- 0.9), and question 3 was 3.1 (+/-1) (Table 2). Sixteen out of 52 patients received a max score of 12, and 30/52 patients scored at least a 10/12 (83%)

Conclusion:

The CollaboRATE questionnaire targets the areas of SDM including explanation of the health issues, determination of preferences, and healthcare usage. On average, our SLE cohort feel significant effort is made to help them understand their disease and include their values. Despite this, only about 57% of patients reported a high score (meaning high SDM effectiveness). Based on these results and the prior study by Meara et al, there remains an apparent gap regarding patient knowledge of SLE diagnosis and treatment, putting them at a disadvantage in SDM. This discrepancy may be due to multiple factors. Further studies are needed to investigate the best information delivery methods to improve knowledge in an effort to empower them in the SDM process.

References: Meara A, Yedimenko J, Steigelman H, Ardoin SP, Peters E. “Do You Know What I Mean?” a Tool to Understand What Lupus Patients Comprehend [abstract]. Arthritis Rheumatol. 2017; 69 (suppl 10).

Barr PJ¹, Thompson R, Walsh T, Grande SW, Ozanne EM, Elwyn G. The psychometric properties of CollaboRATE: a fast and frugal patient-reported measure of the shared decision-making process. J Med Internet Res. 2014 Jan 3;16(1):e2

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/effectiveness-of-shared-decision-making-in-systemic-lupus-erythematosus-patients-at-osu/