The patient-clinician relationship can have wide-ranging effects on patient mental health, healthcare behaviours and satisfaction with care, in addition to clinical outcomes. This relationship is especially important in chronic autoimmune rheumatic diseases, which remain incurable, necessitating a life-long need for regular medical support. The overall objective of this PhD was therefore to investigate the impacts of positive and negative medical interactions on patients with systemic lupus erythematosus and related diseases, in order to identify potential opportunities for improvement.

A series of inter-linked studies employed complementary methodology to meet this objective, including: 1) an ethnographic analysis of the LUPUS UK forum to more deeply understand the patient group and their needs and priorities; 2) three mixed methods studies, the first to explore patient symptoms and medical experiences, the second to examine the impacts of the Covid-19 pandemic on healthcare and medical relationships, and the third to ascertain patient self-reported prevalence of neuropsychiatric symptoms, identification, and the impact of medical relationships and previous misdiagnoses; and 3) a randomised controlled trial that was adapted to become a longitudinal cohort to measure the effects of changes to care on medical relationships due to the Covid-19 pandemic. Mental health and wellbeing was measured by the 14-item validated Warwick Edinburgh mental wellbeing scale (WEMWBS). T-tests and correlations were used to explore differences and associations between various participant groupings, and between patient measures of mental health, care, and behaviours.

Findings showed an overwhelming perception of invalidation in multiple areas of patient lives, including medically. There were significant associations between mental health and multiple measures of satisfaction with care. There was a positive correlation between satisfaction with life and satisfaction with medical care (r=0.41). However, patient perception of self-efficacy and control over disease had a higher correlation with life satisfaction (r=0.52), suggesting empowering patients and encouraging self-empowerment and peer support in addition to medical support are key elements to also be considered in clinician-patient communication.

An unexpected finding was that healthcare-behaviours were only weakly correlated with medical relationship satisfaction measures. Reporting of mental health symptoms to clinicians was low (>50% rarely or never reported these symptoms) and treatment adherence was high (81% of the large-scale Covid-care study participants reported always adhering to treatment), although this was found to have no significant association with the perceived quality of the medical relationship.

The Covid-19 pandemic predictably had a very negative impact on medical relationships and patient medical security. Medical security versus medical abandonment was a key theme identified from in-depth interviews. The studies identified the building blocks of medical security as: clinicians being quickly available, believing and validating patient-reported symptoms, and providing continuity of compassionate care.

There was a high level of reported persisting psychological damage and medical distrust expressed by many study participants from their previous ‘Adverse Medical Experiences’. These were often accrued on lengthy and traumatic diagnostic journeys where a propensity of clinicians to initially misdiagnose these patients with psychosomatic or mental health conditions was identified. Reductions in long-term satisfaction with care and with life, medical security and mental health were associated with psychosomatic or mental health misdiagnosis, and the lengthiest diagnostic journeys, although there were no/weak correlations with any adverse long-term impacts on some patient behaviours.

Systemic autoimmune rheumatic disease patients had a high burden of neuropsychiatric symptoms, and concerningly high levels of under-reporting these symptoms to clinicians. Clinician participants demonstrated compassion and a desire to improve care, but are hindered not just by time constraints but also their under-estimation of the disease burden, the degree of under-reporting, and the long-term impact of their patients’ frequent previous adverse medical experiences. The greater value attributed to objective over subjective data was both an over-arching theme throughout the thesis studies, and a prevailing attitude to challenge more widely in medicine and medical academia. This incorporated the patient views of invisible, non-externally verifiable symptoms being treated less seriously than those with objective measurements, and the explicitly discussed physician desire for objective evidence. In addition, this extended to many clinicians and medical journals prioritising ‘objective’ quantitative data over qualitative research, and to my own challenges over-coming perceptions, including my own, that my subjectivity as a patient needed to be constrained to ensure credibility and impact.
This analysis on what is perceived to constitute a positive/ negative medical relationship, and resultant suggestions on how to build supportive medical relationships will raise awareness of the patient and clinician views and thus improve patient-clinician relationships. Particular focus is required to reduce – and improve medical support during – the often long and damaging diagnostic journeys. Valuing subjectivity, and listening to a patients’ experiences and self-evaluation is key.