The usual term is autoimmune rheumatic disease. That covers RA, lupus, systemic sclerosis, Sjogren's syndrome, mixed connective tissue disease and the types of vasculitis that affect locomotor areas, such as Wegener's ganulomatosis and Churg Strauss syndrome. Rheumatic is a vague term but most patients understand that it basically means the sort of illness rheumatologists deal with and has to do with moving bits rather than internal organs.

Fantastic - that makes good sense. Thanks. 

In Germany people address this topic using the word "Rheuma", which is probably similar to "Rheumatic" that Jonathan suggested. Doctors often use: "Rheumatische Erkrankung" which means "Rheumatic Disease". They also use "Erkrankungen des rheumatischen Formenkreises" which is more scientific. Not sure what would be the English equivalent. People tend to inflate rheumatic diseases with all disorders of joints etc.

Hope this helps

In Canada (McGill U.), we use the acronym SARDs for Systemic Autoimmune Rheumatic Diseases for that group.  We tell patients they can expect 

1. Systemic features  which are either (any) organ specific or so-called "B symptoms" i.e. not organ specific;

2. Autoimmune/inflammation features which are autoantibodies and phase reactant biomarkers to be tested for in their blood;

3. Rheumatic features which refers to any axial or peripheral MSK manifestations;

4. Diseases: "Something is wrong" feeling.

Hope that helps your knowledge translation efforts at that level.

best wishes

HM

I use the term "autoinflammatory" and explain that it is basically run-away inflammation that the body directs against itself ("auto").  I explain that inflammation is essential to protect us from infections, cancer and to initiate the healing process, but uncontrolled it damages the body. 

I explain that "inflammation is all about location, location, location. "Itis" means inflammation.  If it is in their joints it is called arthritis; in their liver, hepatitis, etc." 

It is unfortuate how many patients have not been educated by their practitioners as to what is happening to them.  Many patients are hungry for details and enlightenment. 

Perhaps some of my posts may be of help in talking to your prospects.  Feel free to use as them as you see fit.  e.g., http://drhellengreenblatt.info/archives/673

Hi Helen,

by addressing the autoimmune side of the problem, you might run into caveats in terms of psychosomatic feedbacks that are unwanted. In psychosomatic medicine there is a well established term "sekundärer Krankheitsgewinn" (sorry again I don't know the English equivalent, so my explanation: this theoretical assumption addresses that a patient may feel good having such a complicated diagnosis because it makes them feel special) by means of this mechanism, patients are not fully commited to getting cured.

I am not sure if your research covers also fibromyalgia, this diagnosis can create even more trouble. E.g. when one doctor suggests that this may be the case, they may start believing they have it. And it may be very difficult to convince them that they don't have it. This gets even more complicated if doctors state different opinions. 

Cheers

Hans

Thanks all for these really useful comments. Interesting stuff! 

I've been out to talk to our public and patient representatives this morning, and they felt that most people in the group we're looking at would identify themselves as having an  auto-immune disease of some sort. They felt the terms 'rheumatic' or 'rheumatism' were general terms for aches and pains rather than relating to the specific disease the they had. 

We have debated whether to include some of the other conditions that come through rheumatology services like fibromyalgia and osteoarthritis, but felt that we would like to keep our study focussed on the forms of inflammatory arthritis and vasculitis that affect the musculoskeletal system for the time being. 

Best wishes,

Rhiannon 

I agree with Hans that you will muddle your clinical waters if you include conditions such as fibromyalgia, chronic fatigue, etc.  The more specific the group you look at, the fewer outliers.  The best of luck.

Those diseases can be termed "auto-immune rheumatic diseases" or "auto-immune inflammatory arthritis" or "chronic inflammatory rheumatic diseases". In Cameroon, we usually use the latter expression, and the general population understands well when we explain that those are longstanding rheumatims often resulting from production by the body of substances that return against the whole producing organism (and especially joints). Indeed, almost all of our population knows that whenever you feel pain originating from the locomotor apparatus, you have rheumatism.

A brief claryfying comment.

To avoid confusion for patients, we do not to use the word "autoinflammation" to refer to the process involved in autoimmune rheumatic diseases. Strictly speaking, autoinflammatory diseases do not have an autoimmune mechanism associated with autoantibody biomarkers as those involve the adaptive immune system.  Rather, they are an increasingly recognized group of relatively rare genetic disorders of the innate immune system sometimes sharing symptoms with autoimmune diseases but very different in their major clinical expression, evolution and outcomes.  Best. 

Dr. Menard:

Thanks for your thoughtful feedback.  

When I speak of autoinflammatory, I am not necessarily suggesting that the origin of these syndromes is due to the generation of autoantibodies, but rather any immune pathways activated by proinflammatory molecules.

e.g., “In SAPHO syndrome, the activation of the PSTPIP2 inflammasome has been suggested to play a role in inducing the dysfunction of the innate immune system.” 

1) Might it be useful to the field to expand the criteria of “autoinflammation” to include non-antibody initiation of inflammation?

2) I speak mainly to laypeople. To my thinking, inflammation is about location, location, location. Inflammation in the joints may be due to arthritis, in the gut, to colitis, etc.  

This view is simplistic, but do you think it is an  inaccurate view of the overall picture of inflammatory disease, i.e.,  destruction of tissues by inflammatory responses?

Thank you for your time.  H

https://www.ncbi.nlm.nih.gov/pubmed/27106250

Dr Greeblatt,

Maybe I was mistaking about the initial question.  I thought wE were initially talking about what to include under "systemic autoimmune rheumatic diseases".  My point is that "autoinflammation" is now reserved to the context of "autoinflammatory diseases" or to that of "diseases with an autoinflamatory mechanism" which although all cytokine driven are not associated with nor do lead to autoimmunity.  That being said, autoimmunity will result in acute/chronic inflammation, also cytokine driven.  You are probably right: all those fine points may not be so important to the suffering patient when informed about his/her condition.  Best.

I tend to agree with Henri that auto-inflammatory disease is a confusing term to use. Most of these terms do not make that much sense in lay language and are terms of art in medicine but I think you either keep to their meanings as terms of art or move away to completely lay terms. The problem with the latter is that we are actually talking about disease processes that are more or less impossible to summarise in lay terms - like lupus or primary Sjogren's syndrome.

From what Rhiannon said initially my understanding was that she was specifically interested in the cluster of diseases that affect women of childbearing age - which would predominantly be the ANA-associated syndromes. She included rheumatoid and vasculitis so it sounded as if she was really interested in autoantibody associated disease - which are still mostly female dominant although perhaps not vasculitis of Churg Strauss and Wegener types. The academic rheumatology community pretty uniformly calls these autoimmune rheumatic diseases.

Auto-inflammatory disease, as I understand it, was specifically introduced to deal with non-autoantibody -associated conditions like psoriatic arthropathy, enteric arthropathy and SAPHO. SO it looks like not being what Rhiannon really meant and too narrow.

I would also add the point that the autoimmune rheumatic diseases that she is interested in are not necessarily inflammatory. People often make the mistake of assuming that autoantibodies only cause disease through inflammation but of course this is not so. In Graves disease it is through receptor ligation, in thrombocytopenia it is through platelet destruction, in Sjogren's the lymphocytic infiltrate is not actually a sialadenitis, membranous nephropathy is not primarily inflammatory, etc etc. This can be important because both physician and patient can fall into the trap of thinking that anti-inflammatory strategies like corticosteroids are relevant where they are not. I always used to make a point of making sure the students did not get the idea that autoimmunity is synonymous with inflammatory disease.