Adherence to Medication by Adolescents and Young Adults with Childhood Onset Systemic Lupus Erythematosus

Background: Systemic Lupus Erythematous (SLE) is a chronic autoimmune disease with multi-organ involvement. Children and adolescents with SLE usually present with more severe illness, in addition to facing age-related challenges and morbidity. Adherence to medications in adolescents and young adults with childhood onset SLE has a major impact on disease control as well as short and long-term outcomes. The aim of our study was to evaluate adherence to medications among children and young adults with pediatric onset SLE and identify barriers for non-adherence by utilizing several adherence evaluation methods.

Methods: Adherence to medications of patients aged 12-25, with childhood onset SLE was assessed as follows:

1. The brief medication questionnaire (BMQ) - self-report tool for screening adherence and barriers to adherence.

2. Mycophenolic acid (MPA) serum level

3. Medication possession ratio (MPR) - Data assessing 90 days refills and dispense

Results: Among 38 patients who enrolled in the study, 65% were found to be non-adherent according to at least 1 evaluation measurement method and 16% according to 2 measurement methods. 46% of patients stated that their medications cause them side effects, 33% of patients indicated difficulty remembering to take the medications, 25%reported difficulty paying for medications. The “adherent group” disease activity index (SLEDAI) score at diagnosis was significantly lower compared to the “non-adherent” group.

Conclusion: Non adherence to medications is highly prevalent among cSLE patients. Side effects, high cost and recall issues were found to be common barriers to adherence. Higher SLEDAI score is a risk factor for non-adherence