Medication decision-making and adherence in lupus: patient-physician discordance and the impact of previous 'adverse medical experiences'

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

doi:10.1093/rheumatology/keab534

Medication decision-making and adherence in lupus: patient-physician discordance and the impact of previous 'adverse medical experiences'

Rheumatology (Oxford). 2022 Apr 11;61(4):1417-1429. doi: 10.1093/rheumatology/keab534.

Authors

Melanie Sloan¹, Elliott Lever², Caroline Gordon³, Rupert Harwood⁴, Sofia Georgopoulou⁵, Felix Naughton⁶, Chris Wincup⁷, Stephen Sutton¹, David D'Cruz⁸

Affiliations

¹ Department of Public Health and Primary Care, School of Clinical Medicine, University of Cambridge, Cambridge.
² Rheumatology Department, Northwick Park Hospital, Harrow.
³ Rheumatology Research Group, Institute of Inflammation and Ageing, College of Medical and Dental Science, University of Birmingham, Birmingham.
⁴ Patient and Public Involvement in Lupus Research Group, Institute of Public Health, University of Cambridge, Cambridge.
⁵ Department of Inflammation Biology, King's College London, London.
⁶ Behavioural and Implementation Science Group, School of Health Sciences, University of East Anglia, Norwich.
⁷ Department of Rheumatology, University College London.
⁸ The Louise Coote Lupus Unit, Guy's and St Thomas', NHS Foundation Trust, London, UK.

Abstract

Objectives: 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.

Methods: Mixed methodology involved thematic analysis of in-depth interviews (n = 23) to further explore the statistically analysed quantitative survey findings (n = 186).

Results: This study identified five themes: (i) physician-patient discordance and a 'hierarchy of evidence' in medication decisions; (ii) the association of adherence with satisfaction with care; (iii) the persisting impact of past adverse medical experiences (AMEs); (iv) the dynamic balance of patient-physician control; and (v) 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 with 3.53 for other participants (mean difference 0.65, P = 0.003).

Conclusion: 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.

Keywords: SLE; medication adherence; patient behaviour; patient–physician interactions; rheumatology.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Humans
Medication Adherence
Patient Satisfaction
Physician-Patient Relations
Physicians*
Quality of Life*

Grants and funding

21992/VAC_/Versus Arthritis/United Kingdom