Is it true that more than half of medical consultations are for MUS? A look at the evidence.
Ah, I see now. The reason that Up to Date states "over 50% of patients are not suffering from a medical condition" is that this has been received opinion for decades, particularly in health policy. There is a ton of research over many decades that established this picture. Try looking up Barsky in the 1980s. (That stuff will really make your hair stand on end.)
In my opinion it's not possible to dispute this picture by quoting research. It's too entrenched, and there are literally thousands of papers that support it. In any case, it's actually useful for the ME cause to accept that half of symptoms are undiagnosed. It shows that half of the time doctors don't actually have answers. Then it's easy to show that there's never been a safe, scientific approach to handling that reality.
I may or may not be good, I am not trusting, I am a professional. Not sure what purpose categorising S4ME members serves. For the purposes of this thread I'm just someone who's interested in the subject of the thread title, ie is the 50% figure true? I don't feel I have to justify or defend such an interest. It's just something I'm interesting in knowing more about.You good people are very trusting, and I think you don't know what an attack looks like in the language of professional discourse.
Members of S4ME are a mixed bunch, are you sure that in the brief time you've been here you're in a position to characterise everybody as a group, and are you sure it's necessary? "Well-meaning" implies naive or misguided to me, but let's not get into that, I'd rather stick to the subject in the title of the thread.I mean, genuinely, that the people on s4me are good, well meaning people. You're also highly intelligent, articulate and very well informed.
my bolding.Finally, to be very clear, the paper certainly does not accept that 50% of patients have MUS. It says this is a typical understanding, and then it goes on to consider in great detail what's actually happening with that portion of the patient population. All of what it says there supports your cause.
And your introduction starts:Biomedical diagnostic science is a great deal less successful than we’ve been willing to acknowledge in bioethics, and this fact has far-reaching ethical implications. In this article I consider the surprising prevalence of medically unexplained symptoms, and the term’s ambiguous meaning.
And the part of your paper relevant to the discussion starts with this.Biomedical diagnostic science is a great deal less successful than we’ve been willing to acknowledge in bioethics.
My bolding.PRELIMINARY INFORMATION
Prevalence and Terminological Ambiguity
By some estimates, medically unexplained symptoms are significantly more common in outpatient settings, or at least in general practice, than symptoms that are medically explained – and this idea really should shake the foundations of clinical ethics as we’ve come to understand the field. One well-known study (Kroenke and Mangelsdorf 1989) offers the astonishing finding that 86% of symptoms for which patients seek biological medical care remain medically unexplained in an internal medicine setting. Findings at that high end have been echoed by several additional studies (Korber et al. 2011; Steinbrecher et al. 2011), though there are equally many that embrace far lower estimates (Swanson, Hamilton and Feldman 2010). A recent review article suggests that MUS “account for 10-15% of all general practice consultations” (Johansena and Riser 2016, 647). In everyday practice at this time, and at the level of policy, estimates for outpatient practice generally seem to fall between these two extremes, so that the prevalence of MUS is understood as roughly equivalent to the prevalence of medically explained symptoms.
my boldingThanks Trish for your questions. You're absolutely right that some research focuses on number of symptoms, while other research focuses on number of patients. Researchers generally fail to note that difference in comparisons and that's really a huge problem. Research on MUS is very unscientific - in large part that is the point of my article.
I'm not sure it's useful to run through all these figures in detail. That's not going to change the big picture. The very extensive process of review and critique for the article did not find any reason to challenge the 50% figure as representative of current understanding among professionals who work with MUS. I think that means you can trust that this is what they generally believe.
I think they're right that roughly 50% of outpatients' symptoms are unexplained, as in, undiagnosed. It's just that they equate this with psychosomatic diagnosis - and there's a serious problem with that. The last part of the paper shows why it's both unscientific and unethical to equate diagnostic uncertainty with psychosomatic diagnosis. That's the part that really matters.
It's a good question, Trish. It might help to know that the higher estimate in Kroenke and Mangelsdorf (in the body of the paper) was incredibly influential. That's a big part of this - it's not just what the papers say. It's also a matter of knowing which ones are really influential and which are peripheral. On this point, note that the JCPMH estimate is not just another research paper. It's a policy document - so no matter what the research says, this is the figure that drives UK health policy.
my boldingWhat I'm saying is that half of symptoms are undiagnosed in outpatient settings. Then I say (in the article) that research typically equates undiagnosed symptoms with psychosomatic symptoms. The article is then devoted to showing how it's unscientific, and unethical, to assume that undiagnosed symptoms are psychosomatic. See?
I agree that it's important to point out, as from my understanding you are doing in your paper, that there are ethical problems in conflating a symptom being medically unexplained, and that symptom belonging in the field of psychosomatic disorders, somatisation etc.... you are so right that there's conflation of proportion of symptoms and proportion of patients. And you're right about how important this is to the statistical picture! The research on this stuff is so bad that they have not reckoned with this problem. That's what I'm saying. You're not going to find an answer to this question in research because they're not that careful. It's appalling. Very deeply confused on so many levels. That's a big part of what I do - I show all the ways that this stuff is unscientific.
Previous studies have suggested this in individual clinics, for example, only 16% of one clinics new outpatient attendees to a US internal medicine clinic was a definite biomedical cause identified for symptoms. [Kroenke et al]
One well-known study (Kroenke and Mangelsdorf 1989) offers the astonishing finding that 86% of symptoms for which patients seek biological medical care remain medically unexplained in an internal medicine setting.
A total of 567 new complaints of chest pain, fatigue, dizziness, headache, edema, back pain, dyspnea, insomnia, abdominal pain, numbness, impotence, weight loss, cough, and constipation were noted, with 38 percent of the patients reporting at least one symptom. Although diagnostic testing was performed in more than two thirds of the cases, an organic etiology was demonstrated in only 16 percent.
This statement is clearly very misleading nonsense. It was not a study of new outpatient attendees, it was a 3 year retrospective study of all consultations by 1000 patients. Since we have no information about whether the 62% of patients studied had any problems getting their symptoms diagnosed, nor whether other symptoms of the 38% were diagnosed. We only have information about whether a particular subset of the 38% group’s symptoms were diagnosed, nothing about whatever other symptoms they reported.Previous studies have suggested this in individual clinics, for example, only 16% of one clinics new outpatient attendees to a US internal medicine clinic was a definite biomedical cause identified for symptoms. [Kroenke et al]
This statement is also inaccurate. She does at least refer to symptoms, not patients, but there must have been lots of symptoms that weren’t include in the study, since 62% of patients did not have their symptoms included at all. The 14 symptoms were selected by the researchers precisely because they are symptoms, such as constipation and headache, for which there usually is no known organic cause.One well-known study (Kroenke and Mangelsdorf 1989) offers the astonishing finding that 86% of symptoms for which patients seek biological medical care remain medically unexplained in an internal medicine setting.
I've recently collaborated with Keith Geraghty on a chapter about MUS for the Oxford Handbook of Ethics and Psychotherapy, and there we use the 50% figure. (That chapter is still under review.)
My point is much simpler - where did the 50% figure come from?
It may not be important to your central ethical argument, but it is important if it means our government in the UK is spending billions on MUS 'services' on the basis of a vastly inflated figure. That matters to me.
The paper's arguments do not depend on the 50% figure - that's not accurate. I suppose it will feel more or less important as a problem depending on how many patients you think are undiagnosed.Hi Diane, I have gone back through this thread trying to get my head around just what you are saying about the 50% figure. I'm sorry this post is rather long. I am trying to sort out your point about the statistics and in what way they can be challenged. I now have a copy of the Kroenke paper and will address it in my next post.
my bolding.
But you do seem to accept the idea that the stats you quote are correct in reporting the proportions of patients whose symptoms are unexplained. You refer here to 'that portion of the patient population'. That seems to imply that half the population have a problem with getting a diagnosis.
Your paper starts with these sentences:
And your introduction starts:
And the part of your paper relevant to the discussion starts with this.
My bolding.
I will address the point I have highlighted in my next post.
You then go on to quote the Up to Date use of 'more than 50% and the UK guideline us of the Wessely et al. 52% figure. I don't dispute that they use these figures.
my bolding
This is where I have a problem with your analysis of the situation. You correctly state that the 50% figure is being used in policy documents relating to that area of 'medicine' and is commonly accepted in the MUS field. That doesn't make it correct. You acknowledge that there are problems with the research. We are in agreement there.
The place where I part company with you is the final paragraph of this post. Why on earth do you believe that 50% of outpatient symptoms are unexplained. Or as you seemed to imply in the post I quoted at the top of this post, that 50% of patients aren't getting a diagnosis. Can you provide any evidence to support either of these statistics?
my bolding
I agree that it's important to point out, as from my understanding you are doing in your paper, that there are ethical problems in conflating a symptom being medically unexplained, and that symptom belonging in the field of psychosomatic disorders, somatisation etc.
But do you also challenge the unethical inflation of statistics by these MUS 'experts' to support their case, and the inaccuracies in the 50% figure used in policy documents? As far as I can see your paper does not challenge the numbers, and you have repeated in this discussion that you believe the 50% figure to be accurate. Your whole paper is built on the premise that 50% of outpatient appointments don't lead to a biomedical diagnosis and/or that 50% of symptoms presented at such clinics are unexplained. That claim is what I'm trying to get to the bottom of.
That's just not tenable. There is far, far too much research to support it, and this research is global. The Up To Date system, for example, is the global leader in research review and summary (made in the US), and they use the 50% figure.The point of MUS in the UK is to save billions not to spend it so it all likely hood the 50% figure came from lies and was deliberately presented to stupid policy makers.
I sure appreciate your diligence and your clarity, Trish. I think it's important that the 50% figure does not directly support the Wessely approach. The Wessely approach is one way of managing the 50% problem that's extremely cost effective - but that doesn't mean the Wessely approach is the source of the problem. That's confused reasoning.A closer look at the Kroenke and Mangelsdorff paper referred to in my previous post and discussed in post #2 of this thread.
Common symptoms in ambulatory care: Incidence, evaluation, therapy, and outcome, Kroenke and Mangelsdorf 1989
Diane has helpfully pointed out that there are too many papers on the prevalence of MUS for me to try to tackle them all, but that this paper has been particularly influential in MUS policy making.
This is borne out by it being singled out from all the papers to quote (or misquote) by Wessely et al in their paper that is used as the source paper for the 52% claim in the NHS MUS guidance document (see post #1)
I have now obtained a copy of the full paper and read it.
Before I go into the detail of what Kroenke actually found, I remind you of the way it has been quoted:
Wessely et al:
Diane O’Leary:
Now let me look at what the paper actually says:
In the abstract:
A retrospective study of the medical records of 1000 patients of one internal medicine outpatient clinic over a 3 year period were examined for new reports of 14 pre-selected symptoms.
In the full paper this is clarified:
38% had 1 or more of the listed symptoms, made up of:
24% 1 symptom; 9% 2 symptoms; 3% 3 symptoms, 2% 4 or more symptoms.
Total symptoms from the list = 567
Organic cause diagnosed = 84 (14.8%)
Psychological cause diagnosed = 58 (10.2%)
No cause found = 425 (75%)
Treatment recommendations were recorded for 311 of the 567 symptoms.
There is also an interesting discussion of follow up, improvement and treatment outcomes for the different subsets.
My notes
This is an internal medicine clinic and they say most of their work is with patients with chronic organic disorders such as hypertension, diabetes, cardiopulmonary disorders and arthritis, and they say the majority of visits are for these known conditions.
We have no information about the diagnostic pathway of 62% of the patients who didn’t report symptoms on the list, nor about other well understood organic symptoms reported by the 38% group.
So both the percentage of patient visits, and the percentage of symptoms that were undiagnosed must logically be far smaller than the figures quoted by Wessely et al. and O’Leary.
Returning to those statements:
Wessely et al.
This statement is clearly very misleading nonsense. It was not a study of new outpatient attendees, it was a 3 year retrospective study of all consultations by 1000 patients. Since we have no information about whether the 62% of patients studied had any problems getting their symptoms diagnosed, nor whether other symptoms of the 38% were diagnosed. We only have information about whether a particular subset of the 38% group’s symptoms were diagnosed, nothing about whatever other symptoms they reported.
O'Leary:
This statement is also inaccurate. She does at least refer to symptoms, not patients, but there must have been lots of symptoms that weren’t include in the study, since 62% of patients did not have their symptoms included at all. The 14 symptoms were selected by the researchers precisely because they are symptoms, such as constipation and headache, for which there usually is no known organic cause.
.......................
In both cases, this misuse of statistics bolsters the misinformation conveyed in the papers. While the purpose for doing so is very different - in Wessely’s case to support his psychosomatic approach; and in O’Leary’s case to try to support patients by challenging the psychosomatic approach - the fact remains that both are helping to perpetuate a myth.
That's just not tenable. There is far, far too much research to support it, and this research is global. The Up To Date system, for example, is the global leader in research review and summary (made in the US), and they use the 50% figure.
Keep in mind that it's 50% undiagnosed patients - not 50% psychosomatic patients. It's the leap to psychosomatic that's a lie, and that problem is particularly serious in the UK.
A closer look at the Kroenke and Mangelsdorff paper referred to in my previous post and discussed in post #2 of this thread.
Common symptoms in ambulatory care: Incidence, evaluation, therapy, and outcome, Kroenke and Mangelsdorf 1989
Diane has helpfully pointed out that there are too many papers on the prevalence of MUS for me to try to tackle them all, but that this paper has been particularly influential in MUS policy making.
This is borne out by it being singled out from all the papers to quote (or misquote) by Wessely et al in their paper that is used as the source paper for the 52% claim in the NHS MUS guidance document (see post #1)
I have now obtained a copy of the full paper and read it.
Before I go into the detail of what Kroenke actually found, I remind you of the way it has been quoted:
Wessely et al:
Diane O’Leary:
Now let me look at what the paper actually says:
In the abstract:
A retrospective study of the medical records of 1000 patients of one internal medicine outpatient clinic over a 3 year period were examined for new reports of 14 pre-selected symptoms.
In the full paper this is clarified:
38% had 1 or more of the listed symptoms, made up of:
24% 1 symptom; 9% 2 symptoms; 3% 3 symptoms, 2% 4 or more symptoms.
Total symptoms from the list = 567
Organic cause diagnosed = 84 (14.8%)
Psychological cause diagnosed = 58 (10.2%)
No cause found = 425 (75%)
Treatment recommendations were recorded for 311 of the 567 symptoms.
There is also an interesting discussion of follow up, improvement and treatment outcomes for the different subsets.
My notes
This is an internal medicine clinic and they say most of their work is with patients with chronic organic disorders such as hypertension, diabetes, cardiopulmonary disorders and arthritis, and they say the majority of visits are for these known conditions.
We have no information about the diagnostic pathway of 62% of the patients who didn’t report symptoms on the list, nor about other well understood organic symptoms reported by the 38% group.
So both the percentage of patient visits, and the percentage of symptoms that were undiagnosed must logically be far smaller than the figures quoted by Wessely et al. and O’Leary.
Returning to those statements:
Wessely et al.
This statement is clearly very misleading nonsense. It was not a study of new outpatient attendees, it was a 3 year retrospective study of all consultations by 1000 patients. Since we have no information about whether the 62% of patients studied had any problems getting their symptoms diagnosed, nor whether other symptoms of the 38% were diagnosed. We only have information about whether a particular subset of the 38% group’s symptoms were diagnosed, nothing about whatever other symptoms they reported.
O'Leary:
This statement is also inaccurate. She does at least refer to symptoms, not patients, but there must have been lots of symptoms that weren’t include in the study, since 62% of patients did not have their symptoms included at all. The 14 symptoms were selected by the researchers precisely because they are symptoms, such as constipation and headache, for which there usually is no known organic cause.
.......................
In both cases, this misuse of statistics bolsters the misinformation conveyed in the papers. While the purpose for doing so is very different - in Wessely’s case to support his psychosomatic approach; and in O’Leary’s case to try to support patients by challenging the psychosomatic approach - the fact remains that both are helping to perpetuate a myth.
Which means the whole figure is even more completely bogus - if that’s possible!
It was a military hospital that served the military, their families and retired military. They claim the demographics were pretty representative of the population.I guess relevant that this was a military personnel cohort. That would be totally unrepresentative of the general population. Probably few women!!