A Complex Problem
Dr. Liu says she and her research colleagues were surprised to learn that HCQ adherence was so low in an integrated healthcare system where care is coordinated. “So much effort has been put in to support adherence, yet only a little more than half the patients are taking hydroxychloroquine as prescribed,” she says.
The researchers were also surprised to find that socioeconomic status and education level did not appear to influence adherence. “This study illustrates that medication and adherence is a very complex behavior that’s not just about access to care, but more importantly, about patients’ beliefs regarding their medications, their relationship with their rheumatologists and their trust in the medical system. In order to improve adherence, our interventions must focus on understanding and addressing these beliefs,” Dr. Liu says.
One possible reason adherence may be low is a concern over HCQ’s side effects, including the risk for long-term retinal toxicity. However, rheumatologists spend a good amount of time explaining the drug and advising patients to undergo annual ophthalmologist screenings to detect any potential problems.
A more pressing concern, Dr. Liu has observed, is patients who discontinue the medication because they don’t feel it works. “[HCQ] has a long onset of action, and patients often don’t notice an immediate difference [as] they do with something like prednisone,” she says. “Many patients feel it’s not worth the risks of taking the medication if they don’t feel noticeably better.”
This is yet another reason why Dr. Liu spends time with patients to set expectations for HCQ use and to emphasize how important the drug is to treat SLE.
Takeaways
Candace Feldman, MD, MPH, ScD, a rheumatologist at Brigham and Women’s Hospital, Boston, says these and similar findings from other studies suggest physicians need to talk to patients about medication adherence. “[Although] certain factors in this study were modestly associated with increased odds of non-adherence, there was no one factor that clearly dominated this association, suggesting that adherence is complex, multifaceted and hard to predict,” says Dr. Feldman, who is also an assistant professor of medicine at Harvard Medical School in Boston and a member of the Lupus Foundation of America Medical-Scientific Advisory Council.
Doruk Erkan, MD, MPH, an associate physician-scientist at the Barbara Volcker Center for Women and Rheumatic Diseases, an associate attending rheumatologist and clinical researcher at the Hospital for Special Surgery, New York, and an associate professor of medicine at Weill Cornell Medicine, New York, says HCQ adherence among his SLE patients is around 60%. He has noticed that patients attempt to self-manage their disease by stopping or using lower-than-prescribed doses of HCQ.
“The [study] findings help us better predict the risk of medication non-compliance while managing lupus patients,” says Dr. Erkan.
