A 26-year-old Peruvian woman presented to the emergency department of a large teaching hospital in Lima, Peru, with epistaxis and hematomas that had occurred over the preceding few days; she was found to have severe thrombocytopenia and a normocytic, normochromic anemia. She was treated with pulse doses of methylprednisolone; however, within two days, she presented with grand mal seizures resistant to anti-epileptic medications, and she became comatose.
A computerized tomography scan showed an intracerebral hemorrhage localized in the left parietal lobe. Despite aggressive supportive and immunosuppressive therapy, she died within a few days.
Five years before this admission, the woman had been diagnosed with systemic lupus erythematosus (SLE), based on the presence of thrombocytopenia, leukopenia, and renal and immunological involvement. She expressed a reasonable understanding of the seriousness of her condition, but voiced concern about the cost of her medications. She was started on intravenous cyclophosphamide pulses, without response; she was then switched to rituximab and mycophenolate, plus prednisone and antimalarials, with good response (proteinuria <1,000 mg/dL; platelets >150,000/mm3 and white blood cell >4,000/mm3).
After achieving almost complete remission, and about eight months before her current admission, she decided to stop all her medications and did not come for her follow-up visits. She blamed her limited financial resources for her inability to adhere to treatment.
As physicians, our main objective in the treatment of SLE patients is to reduce disease activity, prevent the occurrence of flares and ensuing organ damage, and increase patient survival; however, this approach does not take into account the importance of understanding the patient’s perspective. In fact, both remission and low disease activity definitions—current goals of SLE treatment—do not include the patient’s perspective on them.1,2 Although patients in remission or with low disease activity have a better health-related quality of life, this parameter is not strongly associated with either disease activity or damage.3-5
Physicians’ and patients’ concerns are not necessarily the same; they tap into different aspects of the disease. In a recent study, the main concerns of patients related to fatigue and pain, whereas the physicians’ main concerns related to neurologic involvement.6 Patients are concerned about how they feel, and physicians are concerned about the occurrence of clinical manifestations that may require specific treatment modifications.7 These differences may lead to self-medication when the patient thinks they are doing worse than what the physician thinks and to a lack of adherence if the situation is reversed.
Lack of adherence has been reported by 43–75% of patients, an issue that occurs more frequently in non-white populations. Lack of adherence is associated with a low educational level, low socioeconomic status, polypharmacy, depression, rural residence and a belief that the medications prescribed cause harm; low adherence is also more frequent in patients with a complex treatment regimen and a complicated treatment explanation by the physician.8-12
Resilience could be a protective factor against nonadherence.13
Further, low medical adherence has been associated with higher emergency department use and overall poorer outcomes, such as renal failure.9,14-17
Based on the importance of the patient’s perspective, several initiatives have been proposed, including patient education by health professionals or by their peers; these programs are aimed at improving patient-physician communication and the management of medication side effects.18,19
Physicians who take care of SLE patients should ascertain and treat disease activity manifestations, prevent the accrual of damage and manage comorbidities. They should also assess medical adherence, the factors possibly predisposing the patient to not follow through with an established regimen and focus on making treatment regimens as easy and manageable as possible.
When we define the treatment goals for each patient, we need to understand the patient’s perspective. The better the communication is between patient and physician, the higher the probability of achieving the planned treatment’s goals.
The story of the woman whose case we presented should not have ended the way it did; we wonder if we failed her when we did not recognize that she was at high risk of becoming nonadherent and act accordingly. To avoid similar situations, we need, first and foremost, to educate our patients throughout their illness and to do it as consistently and frequently as possible. We should also refer our patients to reliable websites that provide important and relevant information.
Additionally, we should evaluate adherence to medication intake and follow-up outpatient visits.
Finally, we should try to make our medical regimens as easy as possible and avoid situations like the one presented here.
Manuel F. Ugarte-Gil, MD, MSc, serves in the Department of Rheumatology at the Hospital Nacional Guillermo Almenara Irigoyen, EsSalud, and at the School of Medicine at Universidad Cientifica del Sur, Lima, Peru.
Graciela S. Alarcón, MD, MPH, is the Jane Knight Lowe Chair of Medicine in Rheumatology, emeritus, at the University of Alabama at Birmingham and professor of medicine, emeritus, at Universidad Peruana Cayetano Heredia, Lima, Peru.