OBJECTIVE

Medication non-adherence contributes to worse health outcomes among SLE patients. The underlying mechanisms that drive medication non-adherence are poorly understood. The purpose of this study was to explore possible mechanisms of medication non-adherence by eliciting patient experiences.

METHODS

Consented adult patients with ACR- or SLICC-classified SLE were recruited. Ten semi-structured interviews were conducted across six participants. Interviews were audio recorded, transcribed, and analysed using an iterative process. The findings were presented to an interactive public forum with SLE patients, family members and friends of patients, and health-care professionals to assess validity and for elaboration of the concepts developed.

RESULTS

The following three interrelated themes emerged from the interviews. First, why do rheumatologists not know more about lupus or share what they do know with their patients? Second, why do I have to take so many drugs and why do the drugs not work? Third, if my rheumatologist cannot communicate with me, why should I follow the prescribed medication regimen?

CONCLUSION

Our exploratory findings lay out a possible underlying logic by which patients might choose intentionally to engage with medication non-adherence behaviours. Patients suggested that poor communication with their rheumatologists along with a lack of validation of their symptoms contributed to them not valuing the recommendations of physicians. This also contributed to development of a cynical outlook and little belief that medication would improve their condition. Although further work is needed to validate these findings, our preliminary work suggests that interventions focusing on the development of communication skills among both patients and rheumatologists are necessary to reduce medication non-adherence.