Medication non-adherence can be a challenge in many diseases, thus also frequently occurring in patients with SLE, possibly leading to poorer outcomes. Several studies have reported proportions of patients with SLE who are non-adherent to treatment, but these proportions range from 3% to 76% depending on how the assessment has been done .
Medication non-adherence can be total, partial, continuous or intermittent, and intentional or unintentional. The reasons for intentional non-adherence are less straightforward than unintentional and include problems related to taking medications (such as adverse events), inability to pay for the medications, disagreement regarding the need for pharmacological treatment, or other patient-specific issues . Beliefs about medications, treatment in general or particular medications, are likely to be associated with intentional non-adherence .
It has been found that the most common reasons for AMA treatment discontinuation by patient initiative include the perception of AMA not being an effective treatment and apprehension about potential side-effects . A recent post-hoc analysis  of two large clinical trials comprising SLE patients with active disease despite standard of care treatment with a high prevalence of mucocutaneous and musculoskeletal involvement, i.e. BLISS-52  and BLISS-76 , showed that use of AMA was associated with better HRQoL perceptions in physical aspects of the medical outcome study (MOS) short form-36 (SF-36), particularly regarding patients’ physical functioning. Importantly, GC doses and use of immunosuppressants were not found to impact physical functioning, and the favourable impact of AMA use was independent of the negative impact of age, disease activity and organ damage.
In another study from Sweden comprising 69 patients with active SLE, selected for treatment with biological agents, i.e. belimumab or rituximab, patients receiving AMA performed better in social functioning and mental health, based on self-reports using the SF-36 health survey . In light of this background, it appears important to improve SLE patients’ adherence to treatment, particularly AMA. Towards this goal, a first step would be to systematically identify influenceable factors that have an impact on medication adherence, and thereafter strategies that could contribute to improved medication adherence.
Our main objective with this study is to identify influenceable factors that impair adherence to treatment in patients with SLE, and suggest strategies that could improve adherence to treatment.