A new study has found that doctors have a variety of opinions on whether different neuropsychiatric symptoms are directly caused by lupus. Doctors rated their assessment as most helpful in diagnosis & patient reports as least helpful. The researchers are calling for more inclusion of the patient voice in assessments.
Doctors had lots of different views on the different ways of assessing neuropsychiatric symptoms (NP) symptoms and lupus, and on whether NP symptoms can be attributed to the lupus itself. Medical tests, such as brain scans or blood tests, aren’t very helpful for identifying NP symptoms, particularly some types of common symptoms like headaches or brain fog, but were important in ruling out other causes.
Using evidence from interviews, the researchers suggested that if doctors included patient views more in their assessment it may help improve diagnosis and how satisfied patients are with their care. The researchers also suggested that the terminology used needs to change to make it consistent across all doctors, which will also help improve understanding and when working together.
In a future study, the researchers are going to test the idea that including patient views in the assessment of NP symptoms and whether they are caused by lupus might help with diagnosis and understanding.
Hello Ms. Kinsey. This is very interesting. I need to ask what is considered to be “ patient views?” Isn’t the conversation between the doctor and patient a standard protocol for diagnosis? Thx.
In this study, they gave doctors a list of 13 different things that might use to help them make a diagnosis of NP symptoms or to decide if the NP symptoms are related to the person's lupus or not. There were two related to "patient views" which were (1) "asking patient view if SLE flaring" and (2) "eliciting patient details of symptoms". Number (1) was rated as the least helpful of all 13 things. And the combination of (1) and (2) was also rated lowest when the researchers grouped answers into categories of "clinician assessment", "patient reports/views" and "diagnostic tests".
Basically, it means that there is a conversation between doctor and patient, but doctors didn't rate what patients thought as very helpful in assessing NP symptoms.
The researchers also did interviews with doctors and patients, and from those, suggested that including the patient's insights and experience in managing their condition would help improve diagnosis, especially as medical tests aren't usually very helpful for these kinds of symptoms and they can be complicated to diagnose.
I hope that makes sense, but let me know if you have any other questions.
I still find this absolutely mad. I think my psychiatric symptoms were what led to a misdiagnosis of Fibromyalgia earlier this year. The comment "you just look SO much like someone with Fibromyalgia" made me feel like I'd been pigeon-holed due to previous diagnoses. I have autism, ADHD, major depressive disorder and anorexia nervosa. From what I've read, at least autism and eating disorders seem to have been linked to autoimmune conditions - my Raynaud's started the same time as the anorexia (which was in my 30s and considered "late" for the condition). I don't know whether rheumatologists are willingly ignoring this kind of information for some reason, as the GPs and dentists I've spoken to seem very aware of it. Luckily for me, I did some research and asked for a second opinion with nailfold capillaroscopy. I felt taken seriously and ended up with a diagnosis of Undifferentiated Connective Tissue Disease.
It seems illogical that doctors don't think what we say is important or relevant. We are the ones living with this all the time, they see us for at most 30-40 minutes every few months. I hope the fact that the view point from doctors about their assessment being the polar opposite experience for patients will at least make some of them stop and think about how they're working. Sorry for the rant, I know it's not fully relevant to this topic and I think it's fantastic that you're doing research like this. Hopefully it will lead to some people getting the appropriate help and treatment (and sooner).
The specialists question the accuracy of the tests they are using
Eg. On page13, Complement C3 and C4, and later it mentions anti ds DNA.
Not only does this compromise assessment of NPSLE, it also can compromise the higher level diagnosis of the overall condition (my GP advised this sort of testing, is not redone on NHS following an initial negative result).
I'm totally sickened by the use of the 2019 SLE Classification criteria for diagnosis, let alone research capturing.
This requires a score of 10 and only considers highest scoring physical symptom which can only score a maximum if 6, unless we have lupus nephritis.
Many of us have many, many symptoms. They are not required to listen to us at all and discharge based on bloods. ( Getting 4 marks from Immunological criteria depends on having immunological result(s) being positive.)
For people like me, with the post 2019 diagnosis having to be UCTD, this is even more of an issue than nobody in NHS following up on NP symptoms. NHS hospital would not see me, let alone worry about headaches, fatigue, peripheral neuropathy and autonomic dysfunction.
The paper says a lot but could be applied at a higher level to diagnosis generally.
The concern seems only to be with people once they have a Lupus diagnosis..which, as evidenced on this forum, is now much much more difficult for some of us to get..
We need to be in a position to question the professional bodies and pathway deciders at the end of the day
This is the real issue.
Since 2019, how many people have had a sero-negative lupus diagnosis?
There have been lots of UCTD diagnoses and many are just turned away like we were (being told they might have Fibro or symptoms are all in their head).
Many here are left to educate themselves about so many diverse things. At the same time the NHS focus is on its own priorities: I presume this is (i) rewarding behaviours that reduce costs (eg early discharge of patients), (ii) maximizing opportunities for research and (iii) having stats that look good (lots of scans) despite its failings. Where do patients come in this?
These are basic questions that it seems are being left to patients to ask.
The findings of the INSPIRE paper were in some national papers on 18 December. Maybe worth us watching the letters to editors over Christmas to see the response🎄🎅🎁🙂
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how many days does it take to get Ana blood test result back from doctors?
Struggling to get a diagnosis/misdiagnosed? Bloods/tests not matching how you feel? Strange symptoms the doctors don't understand? 
How often do lupus patients see their hospital doctors?
LUPUS UK Community Survey - Question Four - Your thoughts about fibromyalgia diagnoses.
