People living with lupus report frequent lengthy time delays between their first symptoms and their lupus diagnosis, in new research from the University of Cambridge and LUPUS UK. The research indicates that the delays to diagnosis could be improved if clinicians had better knowledge of the disease, listened to and believed patient-reported symptoms and looked for an underlying cause.
The new research is the first to ascertain the opinions of people living with lupus and related diseases on the reasons for misdiagnoses and diagnostic delays, and experiences with clinicians. It explores the causes and impacts of the time delays and the misdiagnoses and looks at patient perceptions of support.
The research team was led by Melanie Sloan from the Primary Care Unit, University of Cambridge, and comprised of patients, behavioural scientists, LUPUS UK staff and eminent rheumatologists. This was a mixed methods study of LUPUS UK online forum members, with qualitative data analysed thematically and combined with descriptive and statistically analysed quantitative data. There were 233 eligible respondents.
Lupus is a chronic, inflammatory, autoimmune disease which can be life- threatening. Symptoms are diverse and often non-specific, especially in the early stages of the disease when patients first seek help. Many patients will have accrued considerable damage to their physical and mental health by the time they reach diagnosis. In this study, the mean time to diagnosis from first experiencing symptoms was 6 years 11 months, and many participants were initially subjected to multiple misdiagnoses.
Seventy-six per cent of respondents reported at least one misdiagnosis for symptoms subsequently attributed to their lupus, or systemic autoimmune rheumatic disease. Mental health/nonorganic misdiagnoses constituted 47% of reported misdiagnoses. These were considered particularly psychologically damaging, and to reduce the development of trusting medical relationships in the future. A typical response was:
‘The misdiagnosis of stress, unexplained etc. is the most dangerous misdiagnosis and it completely destroys trust, feels like you are not being listened to, like you are explaining it wrong, doing something wrong, doing this to yourself and it causes guilt, mistrust and makes you question yourself’ (Female, 30s, England).
Although about half of respondents reported they currently received good or excellent current care for their lupus/related disease, over 75% reported receiving no or poor support in coming to terms with a life-changing disease. This participant explains:
‘I have treatment for the disease but not as a person who has lost so much. It’s a devastating illness…Delays in diagnosis are damaging physically and mentally, There is a clear pattern of grief coming to terms with a massive loss of quality of life. I’ve had no emotional support’ (Female, 40s, England).
Clinicians listening to and believing patient reports, rather than being overly focused on – sometimes inconclusive – blood tests, was a key qualitative theme, alongside improved clinician knowledge and respecting these patients’ often extensive knowledge of their own disease.
Lupus and other systemic autoimmune diseases are notoriously challenging for both patients and physicians in terms of diagnostic difficulties and management of these diseases. Many patients report feeling damaged not just by the disease, but also by their medical interactions, particularly during arduous diagnostic journeys. Our research will hopefully make physicians more aware of the need to carry out broader ranges of tests, fully listen to patient symptoms and work with patients to try and ‘join the dots’ of often seemingly unconnected multiple symptoms”.
– Melanie Sloan, research associate, Behavioural Science Group
Paul Howard, co-author and Chief Executive of LUPUS UK, said: “The findings from this research reinforce previous reports of significant delays many people with lupus experience in getting a diagnosis of their disease. Importantly the study also highlights the barriers many people experience on their diagnostic journey, perhaps identifying key areas for working on improvements. In the current COVID-19 climate and looking ahead to the near future, the nature of medical consultations will be different, with more responsibility placed on patients to report and describe symptoms remotely. Those people with clinicians they do not trust may under-report symptoms, which would increase diagnostic delays.”
This research shows the critical importance of clinicians listening to and understanding their patients and continuing to make referrals for more specialist investigations”
– Paul Howard, Chief Executive of LUPUS UK
This research was funded by LUPUS UK.
Read the research paper
M Sloan, R Harwood, S Sutton, D D’Cruz, P Howard, C Wincup, J Brimicombe, C Gordon Medically explained symptoms: a mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases. Rheumatology Advances in Practice, 26 Feb 2020
Lucy Lloyd, Communications, Primary Care Unit