As a general practitionner mostly, and holding a vacation in a pain unit in hospital, I frequently ask myself which is the impact of telling to a patient "you have fribomyalgia" on further care, knowing that there is no specific treatment for this syndrome about which we have no proof of a specific disease reality.
I found only one study on Pubmed :http://www.ncbi.nlm.nih.gov/pubmed/12115155?log$=activity
One of our student want to make his end of studies research on this theme, but we don't have the capacity of making a cohort. We are searching if there is a study design that would allows us to help to answer this question, may be somebody here has an idea ?
Thank you for your answer, Martin. Making a qualitative study is one of the two options I selected, for the moment (the other one is to try to make a case-control study, but it may be difficult to find enough control subjects).
I'm interested in this notion you give of triangulation with others people views. I know the triangulation of the verbatims analysis by another person than the researcher, but not with other subjects, how could it be perform ? May be you have some theorical reference for this perticular point ?
The KP White's study is very interresting, but it seems to me that it has a rather low level of proof, given the number of patients, and the lack of one main outcome.
This discussion have been present since the creation of the Fibromyalgia Syndrome concept. It seems to me that a great number of patients that up to that moment didn't know how to explain it symptoms, started understand that their symptoms have a pathophysiological basis, even if it is complex and not totally known. They started to look how to deal with it, instead looking for a diagnostic label. The important is that the physician along of making the diagnosis shall explain the nature of the symptoms and the influencing factors.
Dear Jose Eduardo, I appreciate your answer, and I totaly agree with you on the basis of the care. On the other hand, it seems that another group of patients "hung up" on the diagnosis, arging that previous physicians were "unable to find the diagnosis" and use this state to avoid any change in their mind, including psychotherapy and anti-depressor treatments.
I agree and that´s the reason there is not an absolute right answer for this question. There always will be different reactions from the patients, mainly in such a heterogeneous and emotional fragile population. What it may be researched is how most of patients reacts and if there is differences in this reaction among subgroups of patients in relation to culture, age, intensity of pain and fatigue, impact of disease, presence of anxiety and depression and others variables.
Thank you Jose Eduardo, I think this is a good idea. We just have to find a study design that will allow us to make a sub-group analysis. That's the reason why I was thinking to a case-control study. Or do you see another possible quantitative study design ?
Dr. Urbain, have you considered looking at how patients diagnosed with fibro are able to access the health care system? Does the label result in less satisfaction working with health care providers?
I once overheard two physicians standing outside a patient room discussing the patient's fibro diagnosis; the one physician openly declared he thought fibro was a somatic disorder and not real, and that the patient should be seeing a psychiatrist.
How the diagnosis affects the physician patient relationship might be what you're looking to evaluate; perhaps a qualitative study of how physicians view fibro. Do they accept it as real, and does seeing that diagnosis on a chart affect the physician patient relationship?
This is another question, a bit complicated too ;-) ! In my mind, the trouble is that for some physicians, what is "psychiatric" is not "real". Taking care of algic patients needs to consider the pain they say to have as real.
Further, we can find a somatic cause to this pain, but when we don't, we have the choice between thinking that their pain have a psychiatric cause, or that they suffer from some unknown disease, that we are unable to diagnose yet.
My question is to explore the difference between these two, from the patient point of vue.
After studying the question with my colleagues, we shall took the option of a qualitative research.
Fibromyalgia is very interesting syndrome because treating it combines several knowledge areas such as pain perception physiology and physiopathology, stress response physiology and disorders, emotional aspects of chronic pain, depression and anxiety as comorbitidies, and others. This is a challenge for a good clinician. I am a rheumatologist but I think this syndrome is defying a complete doctor. Fibromyalgia is teaching us to be "doctors" again.
Yes, it does. I think the most important thing is to understand if the patient really suffers from fibromyalgia and to recognize fibromyalgia symptoms from "normal" conditions and especially from entesoarthritis.
Yes, I feel that it does make a difference. Some will be relieved that they have a diagnosis and their pain is medically "accepted". And others will be upset that it is not anything more serious and that there is no magic pill to make their symptoms go away. How you can study whether it makes a difference will be difficult and there is no way to truly double-blind such a study. Perhaps a way would be to label one group "fibromyalgia" and the other group "generalised rheumatism" and follow-up for outcomes. But you would have to give both some sort of treatment, which would be another confounding factor for the study. All the best!
Thank you, Swan. I see often another group : the inpatients that are unable to accept that they have a psychological disease, and prefer to ear that they have a somatic but still unknowed disease - and that includes some physicians ;-) !
But for these patients, what is the best ?
Very interresting, Ninive, thank you for sharing. I'll let know on this sheet when we'll have results.
Thank You Angela, I have allready seen this publication. In our pain unit, we also use the combination of several tools to help patients with FMG.
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