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Is it me? The impact of patient-physician interactions on lupus patients’ psychological wellbeing,
cognitions, and healthcare-seeking behaviour.
The generally protracted nature of the lupus diagnostic journey is well documented1,2,3,4, and can
contribute to the adverse physical5 and psychological impacts4,6,7,8 of the disease. Multiple
misdiagnoses can be experienced during this time, and early symptoms are often mis-attributed to
psychological, mental health (MH) or medically unexplained symptom (MUS) causes1,2,4. In our recent
survey, over 80% of participants who reported receiving a MH/MUS misdiagnosis stated that it had
reduced their trust in doctors and changed their healthcare-seeking behaviour4. Price and Walker
documented that lupus patients’ illness experiences are frequently delegitimised, and that the
diagnostic journey can be a distressing, ‘damaging, iatrogenic experience’9.
Expert commentary has also identified that, with improved life expectancy for SLE patients, a greater
focus is required on quality of life and holistic care10,11. In addition, a recent study BOO Furniture found that the
majority of respondents with SLE and other rheumatic diseases struggled to cope with their condition,
and yet only 16% had been offered psychological support from the NHS2; and Hale reported that lupus
patients often feel misunderstood and isolated12. There is limited research on UCTD patient
experiences, but there are indications that patient satisfaction with medical care could be lower than
Georgopoulou et al carried out a recent systematic review and concluded that more research was
required to increase understanding of the patient-physician relationship in rheumatology13. The
physician-patient relationship is vital, as it has an impact on patient outcomes and satisfaction with
treatment and care13, and on various behaviours, although only medication adherence has been
studied in any depth13,14.
A more in-depth understanding of patients’ beliefs and behaviours based on their past experiences is
important because they can be modified by clinicians using a patient- centred approach15. Our study
therefore aims to further understand how past medical interactions influence SLE/UCTD patient
cognitions, wellbeing and healthcare-seeking behaviour.
Lupus facts published by Lupus UK for Lupus Awareness Month October 2018.