Is it me? The impact of patient–physician interactions on lupus patients’ psychological well-being, cognition and health-care-seeking behaviour

Abstract

Objective To explore the impact of patient-physician interactions, pre- and post-diagnosis, on lupus and undifferentiated connective tissue disease (UCTD) patients’ psychological well-being, cognitions and healthcare-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: 1. The impact of the diagnostic journey; 2. The influence of key physician(s) on patient trust and security, with most participants reporting at least one positive medical relationship; 3. Disparities in patient-physician priorities, with patients desiring more support with Quality of Life (QoL) concerns; 4. 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; 5. Changes to healthcare-seeking behaviours, such as curtailing help-seeking or under-reporting symptoms; and 6. 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 may 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, may lead to more trusting medical relationships and positive healthcare-seeking behaviour.

Improving medical outcomes in lupus: enhancing the effectiveness of the medical interview and improving patient support

“…Using patient experiences, in a study built on a foundation of user participation from its outset in coalition with eminent rheumatologists, Sloan et al [ 3 ] highlight the therapeutic importance of excellent medical communication, stressing its potential to improve medical outcomes and increase patients’ quality of life without morbidity and at low cost, with the added benefit of reducing time wasted in futile medical consultations.…”

“…Sloan et al [ 3 ] briefly review the considerable evidence that people with lupus/UCTD often experience a harrowing diagnostic journey and live with a range of constitutional symptoms (most commonly, fatigue) that often remain unaddressed or inadequately managed. They have high levels of depression and anxiety, associated variously with the fluctuating and uncertain nature of SLE/UCTD and the psychosocial consequences of the illness, and yet few are offered psychological treatment.…”

“…Using this evidence, Sloan et al [ 3 ] accessed patient expertise via the LUPUS UK website, in order to understand more about patients’ current experiences of medical support in managing their illness. They surveyed 233 people, conducting qualitative interviews with 21 purposively sampled individuals, who provided evidence of the sorts of medical contacts that both help and hinder clinical improvement ( Fig.…”

“…Reassuringly, the great majority reported at least one sustaining medical relationship with a positive impact on their psychological and physical health. Less happily, another major theme was ‘persisting insecurity and distrust…’ [ 3 ] from what were perceived as ‘…dismissive physician responses to symptoms’ [ 3 ], which had negative effects on individuals’ health behaviours, sometimes ‘for years’. [ 3 ] This was particularly important for those with UCTD or those diagnosed in childhood/teenage years, sometimes fraying family relationships when parents were felt to ‘side’ with doctors sceptical of patients’ symptoms.…”

“…Another concern is the authors repeating, without comment, the term ‘post-traumatic stress disorder’ (PTSD) [ 3 ], where it has been used by participants. This a narrowly defined, contested psychiatric diagnosis, and what is described by Sloan et al would not fit the Diagnostic Statistical Manual (DSM) criteria [ 9 ], whereby an experience of an imminent threat to life or physical integrity is needed to make the diagnosis.…”