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Rheumatology Advance Access published online on January 16, 2009
Rheumatology, doi:10.1093/rheumatology/ken479
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© The Author 2009. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For Permissions, please email: journals.permissions@oxfordjournals.org

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

S. A. Chambers1, R. Raine2, A. Rahman1 and D. Isenberg1

1The Centre for Rheumatology, Department of Medicine
2Department of Epidemiology and Public Health, University College London, London, UK

Correspondence to: Correspondence to: S. A. Chambers, The Centre for Rheumatology, Department of Medicine, University College Hospital, 250 Euston Road, 3rd Floor Central, London NW1 2PQ, UK. E-mail: shrspk{at}aol.com


  Abstract

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.

KEY WORDS: Qualitative, Adherence, Compliance, SLE, UK, Medications, Immunosuppressants, Visual analogue scale, Side effects, Doctor–patient communication

Submitted 18 May 2008; revised version accepted 27 November 2008.
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