Medically explained symptoms: diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmunity | Sloan et al. 2020

Lucibee · Mar 2, 2020

Full title: Medically explained symptoms: A mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases
Authors: Melanie Sloan et al. (UK universities)
Link: https://academic.oup.com/rheumap/advance-article/doi/10.1093/rap/rkaa006/5758274

Abstract
Objectives
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. Mean time to diagnosis from first experiencing symptoms was 6 years 11 months. Seventy-six percent 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 healthcare-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, and yet the majority reported receiving no 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.
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(full pdf available at link above).

Hutan · Mar 3, 2020

An interesting paper - and a really important one I think when making the case that the MUS concept causes harm.
@dave30th

Despite anti-dsDNA positive participants having the most specific biomarker for SLE, they still experienced considerable diagnostic delay, with a mean time to diagnosis of 6 years and 2 months, and with 54% reporting having received an MUS/MH misdiagnosis. Although these figures were better than those for permanently seronegative participants (for whom the mean time to diagnosis was 13 years and 92% of whom reported an MH/MUS misdiagnosis), they still raise the question of whether there is sufficient knowledge and early testing of autoantibodies in primary care
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Good grief. And in line with a larger surveys:

A 2014 survey of over 2500 LUPUS UK members found that the mean time to diagnosis from initial symptom awareness was 6.4 years, with approximately half reporting they were initially misdiagnosed2.
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MUS/MH misdiagnoses were reported as damaging to mental health, trust in physicians and healthcare seeking behaviour, occurring in almost half of misdiagnosed participants before diagnosis. This propensity for early psychological misdiagnosis in systemic autoimmunity is in line with a recent US study of over 3000 SLE patients where over 50% were initially told there was nothing wrong or their symptoms were psychological.
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Like the UK ME Biobank paper (that interviewed people with MS and ME) found for people with MS, delays in diagnosis throw people into the MUS infested no-man's land that, I think we, even when diagnosed, permanently live in.

‘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).
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Many of the patients in this study were disadvantaged by a presentation of ‘multiple symptoms, multiple systems, multiple times’ often being attributed to MH/MUS, especially if there are no presenting visible symptoms or organ involvement.
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Interesting that fatigue (and cognitive dysfunction) are seen as very debilitating.

Fatigue was reported to be present all or most of the time by 82% of respondents and specified by the majority to be the symptom impacting their life the most, followed by pain, and then cognitive dysfunction.
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It was clear that lupus specialists provided people with lupus with the best care for their lupus symptoms. It's not rocket science, but in my country, we have no ME specialists and there are policies of having GPs manage all manner of conditions.

The clinicians considered to have the poorest knowledge of lupus were A&E doctors, GPs and neurologists, with respective ratings for poor/very poor knowledge being 66%, 50% and 51%.
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The importance of physicians admitting limited disease-specific knowledge and referring more quickly for appropriate testing and consultations with specialists was also identified within this theme. Many patients reported feeling that MH/MUS misdiagnoses were due to lack of physician knowledge of immune dysfunction and not listening/believing a patient’s symptoms.
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The blind reliance on blood tests is highlighted as a problem for diagnosis, with the suggestion that many people remain undiagnosed. There are good words about clinicians needing to listen to and believe patients.

One of the barriers to diagnosis is from physicians mistakenly considering ANA and anti dsDNA positivity as essential for referral to rheumatology/diagnosis, also sometimes failing to interpret or test for other relevant haematological or immunological abnormalities, as specified in the BSR and other guidelines14,15,16. ...Whilst ‘true’ seronegativity (permanently negative ANA and anti dsDNA) is often estimated at 5-8% of the SLE population, this only includes those who have achieved diagnosis. The much greater diagnostic delay in seronegative patients in this study (>4 years for 92% compared to 55% for seropositive and 65% for intermittently ANA positivity) was statistically significant (p=0.0386) and suggests that the actual percentage is much higher, with many potentially remaining undiagnosed and untreated.
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The overarching qualitative theme was the importance of listening and belief in patient symptom reporting, in terms of being essential in linking multiple diverse symptoms for a quicker diagnosis and identifying flares, in validating patients’ subjective experiences and building a supportive relationship with the patient
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Hutan · Mar 3, 2020

Here's the full list of authors:
Melanie Sloan, Rupert Harwood, Stephen Sutton, David D’Cruz, Paul Howard, Chris Wincup, James Brimicombe, Caroline Gordon

The Institute of Public Health, University of Cambridge features strongly
Also Lupus UK, Dept of Rheumatology of University College London, University of Birmingham

Perhaps there are some people in that list who might be interested in collaborating with ME/CFS organisations.
Edit - maybe Melanie Sloan would be a good person to present the findings at a CMRC conference?

dave30th · Mar 3, 2020

Hutan said: ↑

An interesting paper - and a really important one I think when making the case that the MUS concept causes harm.
@dave30th
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Thanks, I'll take a look.

Hoopoe · Mar 3, 2020

I would like to introduce the term psychosomatic reductionism. Whatever symptoms the patient has, it can and will be "explained" as some sort of emotional or thinking problem. If any symptom really doesn't fit it's just ignored.

Mithriel · Mar 3, 2020

strategist said: ↑

I would like to introduce the term psychosomatic reductionism. Whatever symptoms the patient has, it can and will be "explained" as some sort of emotional or thinking problem. If any symptom really doesn't fit it's just ignored.
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Beautifully succinct. It describes our predicament in a nice soundbite which is what we need. I will keep a copy of that if it is OK.

Sean · Mar 7, 2020

psychosomatic reductionism

That works.

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Medically explained symptoms: diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmunity | Sloan et al. 2020

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