Lupus patients – and those with related systemic autoimmune diseases – often experience persisting medical insecurity and negative healthcare-behaviours.
These arise from traumatic diagnostic journeys and negative medical interactions, according to an in-depth study of patients’ experiences led by the University of Cambridge and Lupus UK. However, most patients also described secure and trusting relationships with individual physicians, allowing the research team to identify the physician behaviours that assisted in building up their patient’s - usually fragile - medical security.
Previous research from this team found, in common with other studies, an average of 6-7 years to diagnosis with lupus. These patients frequently report medical dismissal of early symptoms and multiple misdiagnoses before (and sometimes after) diagnostic clarity with lupus or another systemic autoimmune rheumatic disease (SARD).
Although life expectancy for patients with lupus has vastly improved in the past 50 years, it remains a life-threatening, life shortening disease in more severe cases, and the majority of patients experience life-changing symptoms and reduced quality of life.
The new research explored in-depth the positive and negative impacts of patient-physician interactions on the wellbeing and healthcare-seeking behaviours of patients, from the patient perspective. Findings included frequent and persisting medical insecurity, with a loss of confidence in the medical profession and a loss of self-confidence and self-worth, especially during the diagnostic uncertainty stage. Participants talked about feeling ‘unsafe’ from the perceived widespread lack of understanding about their disease amongst doctors, especially in A&E:
‘I never feel safe or secure with any of them. Even in an emergency, I have to be well enough prepared to offer up anything I can to help even the most basic types of medics to help me’ (Female in study, 60s)
The majority of participants were found to have negative healthcare- seeking behaviours such as under-reporting symptoms and avoiding seeking medical help, felt to be largely due to past disproportionate responses from doctors, most commonly disbelief and dismissal of symptoms. This quote from a patient who had severe multi-organ involvement, including kidney and brain, from adolescence, demonstrates the persisting impact from past negative medical interactions:
‘Psychologically it would be better for me to never see another doctor. It makes me wonder how many of us have just walked away and died’ (Female 50s)
Conversely, other participants reported a very trusting medical relationship, often with their rheumatologist or GP, and greatly appreciated the support given in managing their life-changing symptoms:
‘She [rheumatologist] didn’t just treat you and listen ... she definitely, very cleverly and carefully, through how she spoke, taught you to live the best life you could with the illness’ (Female, 50s)
The research team identified the physician behaviours that assisted in building up their patient’s - usually fragile - medical security, as the ABCs:
Availability – With a relapsing-remitting disease, reassurance that there would be quick access to a trusted, knowledgeable specialist in an emergency was very valued
Belief – As many of the symptoms are not visible (such as pain, fatigue and cognitive impairment), belief in a patient’s reports of their symptoms was very important rather than relying solely on visible symptoms and test results.
Continuity and connection – Patients discussed the importance of building up a trusting relationship with the same clinician where the patient felt they were known as a person and their individual disease manifestations understood.
The research was funded by LUPUS UK and led by Melanie Sloan from the Primary Care Unit (Cambridge), and two of the most eminent UK specialists, Caroline Gordon (Birmingham) and David D’Cruz (Guys hospital). The team comprised of patients, behavioural scientists, LUPUS UK staff and rheumatologists.
This was a qualitative study using thematic analysis of 21 participant’s interviews, purposively selected from the 233 respondents completing a survey on their medical experiences, the results of which were previously published here: Medically explained symptoms: a mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases, in Rheumatology Advances in Practice.
The findings from this research suggest that although many patients have eventually built secure, trusting medical relationships with individual physicians, distrust in the wider medical profession often remains. Security and trust often remain fragile and can be improved by physicians reassuring patients of their availability in times of crisis, validating patient reports of symptoms and being more aware of the ongoing impact of persisting psychological damage from previous misdiagnoses.
“Our work to date has demonstrated concerning levels of psychological damage in these patients from their diagnostic journeys and previous medical interactions. We hope this research will raise awareness of the persisting impact of negative medical interactions and how positive medical relationships can be further developed to improve patient security and more positive healthcare-seeking behaviours.” Melanie Sloan, Research Associate, Behavioural Science Group, University of Cambridge
“Lupus and related diseases present with multiple, diverse, often initially non-specific symptoms and remain under-researched and poorly understood by non-specialised clinicians. Having been lead author on the British Society of Rheumatology’s guidelines for the management of lupus, I consider that this research very much complements the guidelines – it’s essential to further understand patient views to improve patient experiences and outcomes.” Caroline Gordon, Emeritus Professor of Rheumatology, University of Birmingham and lead for Birmingham Lupus UK Centre of Excellence, Sandwell and West Birmingham Hospitals NHS Trust.