Abstract
ObjectivesThe 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.MethodsFollowing 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.ResultsThere 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.ConclusionPatient 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.
Highlights
SLE is a chronic, inflammatory, autoimmune disease, which can be life threatening
Seventy-six per cent reported at least one misdiagnosis for symptoms subsequently attributed to their systemic autoimmune rheumatic disease
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
Summary
With no definitive diagnostic tests for SLE and related diseases and with a diversity of often non-specific presenting symptoms [1], patients are largely reliant upon expert medical opinion for a diagnosis, with delays in diagnosis and subsequent treatment commonly reported [2,3,4]. A 2014 survey of >2500 LUPUS UK members found that the mean time to diagnosis from initial symptom awareness was 6.4 years, with approximately half reporting that they were initially misdiagnosed [2]. Diagnostic delays of >3 years were reported by 58% of lupus participants in the 2017 Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA) survey [4]
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