Being busy & other logistics—Half of the patients said they forget to take medications or pick up prescriptions, circumstances they attributed to irregular work schedules and problems taking medicine with food. These included not enough time to eat and lack of appetite. Five providers said patients forget doses—especially in the evening—because of the complexity of drug regimens.
Problems with taking pills & side effects—Five patients and four providers noted the number and size of pills and dose frequency. Providers and staff often noted gastrointestinal discomfort, especially nausea, as a side effect. Patients said nausea—or even worry about it and other side effects—led to skipping meals and doses.
Mental & physical fatigue—Some patients said they tired of taking drugs they would need for the rest of their lives. A quarter of providers and staff sensed patients’ fatigue. Some providers attributed skipped doses to “defeatist attitudes”; others attributed fatigue to depression or younger age. Meanwhile, some patients reported they fell asleep before evening doses or had difficulty waking up in time to eat and take morning doses.
Understanding drugs & their necessity—A quarter of patients said they thought drugs were unnecessary when they felt well, and two providers noted concern about this incorrect perception. Some patients stop taking medications that do not provide immediate or complete relief, providers said. Many believed that patients don’t fully understand how serious lupus is, how medications work or what to expect from those drugs. Providers also blamed insufficient patient education due to time constraints.
External influences—Several providers and staff said patients may pay more attention to information from the internet, family and friends than to information from healthcare providers. Family and friends may not believe patients are sick and discourage them from using medication or suggest alternative therapies or diets.
Dr. Sun was surprised by how often affordability was a barrier, even among insured patients. Only one patient was uninsured. She noted that side effects were described almost exclusively by adherent patients; mainly nonadherent patients discussed logistics-related and intrinsic barriers.
“We may underappreciate all that patients go through to get their medications,” Dr. Sun says. Each patient described a unique mix of barriers to taking lupus medications, but in general they focused on external barriers beyond their immediate control; conversely, providers focused on internal barriers.
“Perhaps we are talking about the same thing. If a patient said ‘I’m too busy,’ it may be driven by a lack of motivation or priority,” Dr. Sun notes. But findings point to the need for an individualized approach to increasing medication adherence among patients.
