Why do patients with systemic lupus erythematosus take or fail to take their prescribed medications? A qualitative study in a UK cohort.

OBJECTIVE: It has been suggested that low adherence may contribute to poor clinical outcomes in patients with SLE. In this study, we explored the reasons why patients with lupus did or did not take their medications as prescribed.
METHODS: Questionnaires including a 10-cm visual analogue scale (VAS) to assess self-reported adherence to prescribed medications were distributed to 315 patients with SLE. The responses were used to select a purposive sample of subjects who participated in interviews to discuss why they did or did not take their medications.
RESULTS: Of the 315 patients, 220 (70%) completed the questionnaire. Thirty-three patients were interviewed. Themes explaining why patients took their medications regularly included: the fear of worsening disease, the belief that there was no effective therapeutic alternative to their prescribed medications, lack of knowledge about SLE to allow confidence in changing medications and feelings of moral obligation or responsibility to others. Themes explaining why patients did not take their medications regularly included: the belief that lupus could and should be controlled using alternative methods, the belief that long-term use of drugs was not necessary, the fear of drug adverse effects, practical difficulties in obtaining medications, and poor communication between patients and doctors.
CONCLUSION: The patients' reasons for taking or not taking their medications largely related to previous experiences with the disease and/or drugs. However, improvements in communication between doctors and patients may promote better adherence in patients with SLE.