Medication decision-making and adherence in lupus: patient-physician discordance and the impact of previous ‘Adverse Medical Experiences’

Research output: Contribution to journalArticlepeer-review


  • Melanie Sloan
  • Elliott Lever
  • Rupert Harwood
  • Sofia Georgopoulou
  • Felix Naughton
  • Chris Wincup
  • Stephen Sutton
  • David D'Cruz

Colleges, School and Institutes

External organisations

  • University of East Anglia
  • University of Cambridge


Medication adherence is critical in the successful management of lupus. There is very limited existing literature on reasons why non-adherence is not reported. This study explores the impact of current and previous medical experiences on patient satisfaction, adherence and reporting of non-adherence. Mixed methodology involved thematic analysis of in-depth interviews (N = 23) to further explore the statistically analysed quantitative survey findings (N = 186). This study identified five themes: 1) physician-patient discordance and a 'hierarchy of evidence' in medication decisions, 2) the association of adherence with satisfaction with care, 3) the persisting impact of past Adverse Medical Experiences (AMEs), 4) the dynamic balance of patient-physician control, and 5) holistic care - beyond a purely medication- based focus. Improving quality of life (43% of participants) and a supportive medical relationship (24%) were the main reasons for adherence. Patient-priorities and self-reported symptoms were perceived as less important to physicians than organ-protection and blood results. Non-reporters of non-adherence, non-adherers and those with past AMEs (e.g. psychosomatic misdiagnoses) had statistically significant lower satisfaction with care. The importance of listening to patients was a key component of every theme, and associated with patient satisfaction and adherence. The mean rating for rheumatologist's listening skills was 2.88 for non-adherers compared to 3.53 for other participants (mean difference 0.65, P = 0.003). Patients would like more weight and discussion given to self-reported symptoms and quality of life in medication decisions. Greater understanding and interventions are required to alleviate the persisting impact of past AMEs on some patients' wellbeing, behaviour and current medical relationships. [Abstract copyright: © The Author(s) 2021. Published by Oxford University Press on behalf of the British Society for Rheumatology.]


Original languageEnglish
Article number534
Early online date10 Jul 2021
Publication statusE-pub ahead of print - 10 Jul 2021


  • SLE, Rheumatology, Medication adherence, patient-behaviour, Patient-physician interactions