Barriers to Medication Decision Making in Women with Lupus Nephritis: A Formative Study using Nominal Group Technique

Objective. To assess the perspectives of women with lupus nephritis on barriers to medication decision making. Methods. We used the nominal group technique (NGT), a structured process to elicit ideas from participants, for a formative assessment. Eight NGT meetings were conducted in English and moderated by an expert NGT researcher at 2 medical centers. Participants responded to the question: What sorts of things make it hard for people to decide to take the medicines that doctors prescribe for treating their lupus kidney disease? Patients nominated, discussed, and prioritized barriers to decisional processes involving medications for treating lupus nephritis. Results. Fifty-one women with lupus nephritis with a mean age of 40.6 +/- 13.3 years and disease duration of 11.8 +/- 8.3 years participated in 8 NGT meetings: 26 African Americans (4 panels), 13 Hispanics (2 panels), and 12 whites (2 panels). Of the participants, 36.5% had obtained at least a college degree and 55.8% needed some help in reading health materials. Of the 248 responses generated (range 19-37 responses/panel), 100 responses (40%) were perceived by patients as having relatively greater importance than other barriers in their own decision-making processes. The most salient perceived barriers, as indicated by percent-weighted votes assigned, were known/anticipated side effects (15.6%), medication expense/ability to afford medications (8.2%), and the fear that the medication could cause other diseases (7.8%). Conclusion. Women with lupus nephritis identified specific barriers to decisions related to medications. Information relevant to known/anticipated medication side effects and medication cost will form the basis of a patient guide for women with systemic lupus erythematosus, currently under development.