Background/Purpose:  Studies suggest that adherence to medications for lupus nephritis is low.  However, there are limited data available on the barriers that patients with lupus nephritis, encounter in their decisional processes involving immunosuppressive medications. Our objective was to identify a comprehensive array of patient-reported barriers (issues) and the relative difficulty these presented for racial/ethnic minority patients with lupus nephritis in their medication adherence decision-making process.

Methods: Barriers involved in the medication decision-making process were queried and then prioritized using a voting procedure during 8 Nominal Group Technique (NGT) meetings that were convened with participants who received treatment for lupus nephritis clinics at University of Alabama at Birmingham (UAB) and University of California at San Francisco (UCSF). The participants were asked “What sorts of things make it hard for people to decide to take the medicines that doctors prescribe for treating their lupus kidney disease?”  We aggregated the prioritized responses from each NGT meeting by combining the same or very similar responses from different groups. The voting totals for the same or very similar responses were summed across groups.

Results: 51 patients with lupus nephritis participated in 8 NGT meetings: 26 African Americans (4 nominal groups), 13 Hispanic (2 nominal groups) and 12 Caucasian (2 nominal groups).  Patients had a mean age of 40.6 years (SD=13.3), disease duration was 11.8 years (SD=8.3), 35.3% had education level of college and beyond.  55.8% needed help with reading health materials from a family member, indicating low health literacy. The participants generated 248 responses (range=19-37 responses/meeting). Across the 8 groups, about 41% of responses were endorsed by patients as relatively more important barriers than others in their decision making process (range=32-54% of endorsed/total). More agreement about the importance of barriers was observed among Caucasian and Hispanic patients (range=32-38% endorsed) than among African American patients (41-53% endorsed). Across the 8 groups, 33 barriers were endorsed as relatively more important than others in decision-making. Overall, participants allocated about 53% of the available votes from all groups as an endorsement of importance to just 7 barriers: potential for side effects, cost, doubts about efficacy, weight gain worries, fear of damage to other organs, potential for causing other conditions, and concerns about long-term risks.

Conclusion: We found general consistency of perceived barriers to medication use in lupus nephritis patients across all groups. NGT and its robustness as a patient-centered approach helped us generate objective, semi-quantitative information regarding factors that influence the decision making process in patients with lupus nephritis. An improved understanding of patient-perceived barriers to medication use will help us design interventions and educational materials for patients with lupus nephritis (e.g., decision aid).

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/identifying-patient-perceptions-of-medication-decision-making-barriers-in-minorities-with-lupus-nephritis/