Background/Purpose: Low medication adherence in lupus nephritis puts patients at risk for poor outcomes, but to our knowledge, relatively little is known about what patients perceive as facilitative factors in medication decisional processes. Our objective was to comprehensively identify factors that racial/ethnic minority patients with lupus perceive as facilitating decisions to take their lupus medications as prescribed.

Methods: We conducted 8 Nominal Group Technique (NGT) meetings with patients with lupus nephritis who received treatment from lupus clinics at University of Alabama at Birmingham (UAB) and University of California at San Francisco (UCSF). Patient perceptions of facilitators influencing the medication decision-making outcome were generated by asking the following question: “What sorts of things make it easier for people to decide to take the medications that doctors prescribe for treating their lupus kidney disease?” Patients in each NGT meeting prioritized a subset of facilitative factors in terms of importance using a voting procedure.  To obtain an aggregated result, responses with the same or very similar wording generated by different groups were combined and the voting totals for all prioritized responses were summed across groups.

Results: 52 patients with lupus nephritis participated in 8 NGT meetings: 27 African Americans (4 nominal groups), 13 Hispanic (2 nominal groups) and 12 Caucasian (2 nominal groups). Mean age was 40.6 years (SD=13.3), disease duration was 11.8 years (SD=8.3), 34.6% had education level of college or greater, 55.8% needed help with reading health materials, indicating low health literacy. The participants generated 281 responses (range=26-42 responses/meeting). 36% of all responses were endorsed across all groups by patients as relatively more important than others in facilitating decisions to take prescribed medications (range=31-52% of endorsed facilitators/total). More variation in the level of agreement about the importance of specific facilitators was observed with African American patients (range 31-52%) than with Caucasian (32-37%) and Hispanic patients (31-34%).  Overall, participants allocated about 57% of the available votes from all groups as an endorsement of perceived importance to 8 facilitators that can be briefly summarized as: demonstrated efficacy, longevity expectations, symptom relief, expectations for living a more normal life, family, cost and affordability, awareness of potential risks and benefits, and minimal side effects.

Conclusion: A general consistency of factors perceived to facilitate medication decision making by lupus nephritis patients was noted across ethnic/racial groups. Patient-identified facilitators of lupus medication adherence can inform the design of effective educational materials for patients with lupus nephritis.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/facilitating-the-medication-decision-making-process-what-do-patients-with-lupus-nephritis-say/