Medically explained symptoms: a mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases

Abstract

Objectives The aim was to explore patient experiences and views of their symptoms, delays in diagnosis, misdiagnoses and medical support, to identify common experiences, preferences and unmet needs. Methods Following a review of LUPUS UK’s online forum, a questionnaire was posted online during December 2018. This was an exploratory mixed methods study, with qualitative data analysed thematically and combined with descriptive and statistically analysed quantitative data. Results There were 233 eligible respondents. The mean time to diagnosis from first experiencing symptoms was 6 years 11 months. Seventy-six per cent reported at least one misdiagnosis for symptoms subsequently attributed to their systemic autoimmune rheumatic disease. Mental health/non-organic misdiagnoses constituted 47% of reported misdiagnoses and were indicated to have reduced trust in physicians and to have changed future health-care-seeking behaviour. Perceptions of physician knowledge and listening skills were highly correlated with patient ratings of trust. The symptom burden was high. Fatigue had the greatest impact on activities of daily living, yet the majority reported receiving no support or poor support in managing it. Assessing and treating patients holistically and with empathy was strongly felt to increase diagnostic accuracy and improve medical relationships. Conclusion Patient responses indicated that timely diagnosis could be facilitated if physicians had greater knowledge of lupus/related systemic autoimmune diseases and were more amenable to listening to and believing patient reports of their symptoms. Patient priorities included physicians viewing them holistically, with more emotional support and assistance in improving quality of life, especially in relation to fatigue.

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

“…For less severe, although still life-changing, symptoms, such as fatigue and pain, the insecurity was largely that these symptoms would be dismissed and disbelieved. Listening and taking a patient’s self-reported symptoms seriously were therefore identified as of key importance, in agreement with several other studies [ 4 , 24 , 25 ].…”

“…A questionnaire on diagnostic journeys, symptoms and perceptions of medical support was made available online on the LUPUS UK forum and lupus UK sufferers’ Facebook page and completed by 233 participants [ 4 ]. Purposive sampling from those giving permission to be interviewed (>75% of respondents) was conducted, using the questionnaire responses to ensure a range of personal and disease characteristics, diagnostic experiences and perceptions of medical support.…”

“…The generally protracted nature of the lupus diagnostic journey is well documented [ 1–4 ] and can contribute to the adverse physical [ 5 ] and psychological impacts [ 4 , 6–8 ] of the disease. Multiple misdiagnoses can be experienced during this time, and early symptoms are often misattributed to psychological, mental health or medically unexplained symptom causes [ 1 , 2 , 4 ]. In our recent survey, >80% of participants who reported receiving a mental health/medically unexplained symptom misdiagnosis stated that it had reduced their trust in doctors and changed their health-care-seeking behaviour [ 4 ].…”

“…Multiple misdiagnoses can be experienced during this time, and early symptoms are often misattributed to psychological, mental health or medically unexplained symptom causes [ 1 , 2 , 4 ]. In our recent survey, >80% of participants who reported receiving a mental health/medically unexplained symptom misdiagnosis stated that it had reduced their trust in doctors and changed their health-care-seeking behaviour [ 4 ]. Price and Walker [ 9 ] documented that lupus patients’ illness experiences are frequently delegitimized and that the diagnostic journey can be a distressing, ‘damaging, iatrogenic experience’.…”

“…In addition, a recent study found that the majority of respondents with SLE and other rheumatic diseases struggled to cope with their condition, yet only 16% had been offered psychological support from the UK National Health Service [ 2 ]; and Hale et al [ 12 ] reported that lupus patients often feel misunderstood and isolated. There is limited research on UCTD patient experiences, but there are indications that patient satisfaction with medical care could be lower than with lupus [ 4 ].…”