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Is it me? The impact of patient-physician interactions on lupus patients

Author

Rheumatol Adv Pract. 2020 Jul 22;4(2):rkaa037. doi: 10.1093/rap/rkaa037. eCollection 2020.

Melanie Sloan 1, Felix Naughton 2, Rupert Harwood 3, Elliott Lever 4, David D'Cruz 5, Stephen Sutton 1, Chanpreet Walia 6, Paul Howard 6, Caroline Gordon 7

Author Information

1 Behavioural Science Group, Institute of Public Health, University of Cambridge, Cambridge.

2 Behavioural and Implementation Science Group, School of Health Sciences, University of East Anglia, Norwich.

3 Patient and Public Involvement in Lupus Research Group, Institute of Public Health, University of Cambridge, Cambridge.

4 Department of Rheumatology, University College London, London.

5 The Louise Coote Lupus Unit, Guys' Hospital, London.

6 LUPUS UK, St James' House, Romford.

7 Rheumatology Research Group, Institute of Inflammation and Ageing, College of Medical and Dental Science, University of Birmingham, Birmingham, UK.

Abstract

Objective: The aim was to explore the impact of patient-physician interactions, pre- and post-diagnosis, on lupus and UCTD patients' psychological well-being, cognition and health-care-seeking behaviour.

Methods: Participants were purposively sampled from the 233 responses to a survey on patient experiences of medical support. Twenty-one semi-structured interviews were conducted and themes generated using thematic analysis.

Results: The study identified six principal themes: (i) the impact of the diagnostic journey; (ii) the influence of key physician(s) on patient trust and security, with most participants reporting at least one positive medical relationship; (iii) disparities in patient-physician priorities, with patients desiring more support with quality-of-life concerns; (iv) persisting insecurity and distrust, which was prevalent and largely influenced by previous and anticipated disproportionate (often perceived as dismissive) physician responses to symptoms and experiences of widespread inadequate physician knowledge of systemic autoimmune diseases; (v) changes to health-care-seeking behaviours, such as curtailing help-seeking or under-reporting symptoms; and (vi) empowerment, including shared medical decision-making and knowledge acquisition, which can mitigate insecurity and improve care.

Conclusion: Negative medical interactions pre- and post-diagnosis can cause a loss of self-confidence and a loss of confidence and trust in the medical profession. This insecurity can persist even in subsequent positive medical relationships and should be addressed. Key physicians implementing empowering and security-inducing strategies, including being available in times of health crises and validating patient-reported symptoms, might lead to more trusting medical relationships and positive health-care-seeking behaviour.