Multiple factors examined to assess nonadherenceThe qualitative study relied on in-depth interviews with 12 SLE racial minority patients (4 adherent, 8 nonadherent) and 12 lupus clinic providers and staff. Patients were predominantly female and African American and 50% had private insurance. All patients had prescriptions for oral immunosuppressants (methotrexate, azathioprine, or mycophenolate). Investigators used the Capability, Opportunity, Motivation, Behavior conceptual model to group adherence barriers by theme. This explored external factors such as cost, pharmacy and clinic-related issues, barriers to taking medications, and factors relating to patient attitudes and knowledge about their medications.
Patients and lupus clinic providers and staff had overlapping but complementary perspectives on adherence barriers.
Many of the responses confirmed what previous research has reported on SLE medication nonadherence. Patients cited access and financial problems, side effects concerns, and some behavioral reasons, such as perceived treatment ineffectiveness, denial of their SLE, or the fact that their condition had improved.
Cost was a big factor: Half of the patients said they couldn’t afford the drugs, even though just one participant was uninsured. Some extenuating factors related to cost included high deductibles, lengthy applications in applying for Medicaid and other support services, not getting total coverage for medications, and insurance lapses.
“As clinicians, we know that getting certain medications approved can be a complicated process, but I think we often still underappreciate the work and hassle some patients have to go through to get their medications when they also have to work odd hours, take care of family members, endure the stress of structural racism – all while being physically ill,” Dr. Sun said.
While some patients reported that debilitating physical symptoms led to nonadherence, more than half admitted that they would forget to take or refill their medications, citing timing issues with their schedule, “brain fog,” or logistical problems associated with taking their pills with food. Side effects or fear of side effects such as nausea or severe adverse reactions were cited as a deterrent. Nearly all of the providers and staff respondents said that side effects such as gastrointestinal discomfort aggravated nonadherence.
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