The Most Popular Terms for Medically Unexplained Symptoms: The Views of CFS Patients, 2015, Picariello et al

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Dolphin

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The Most Popular Terms for Medically Unexplained Symptoms: The Views of CFS Patients

Federica Picariello, Sheila Ali, Rona Moss-Morris, Trudie Chalder
February 28, 2015
Journal of Psychosomatic Research
http://dx.doi.org/10.1016/j.jpsychores.2015.02.013

Highlights
  • We assess the top preferences of CFS patients for an alternative umbrella term to MUS.
  • The most popular choices across the rankings were: Persistent Physical Symptoms and Complex Physical Symptoms.
  • According to CFS patients, a term has to reflect the physical experience of MUS.
  • Nomenclature is vital to appropriately reflect conditions and to avoid misshaping opinions of HCPs and the public

Abstract
Objective

Medically unexplained symptoms are common, highly distressing and are often associated with profound disability.

One of the controversies surrounding this area relates to which umbrella term should be used to group such symptoms.

The purpose of this research was to establish the preferences of patients with chronic fatigue syndrome (CFS) for an umbrella term for medically unexplained symptoms.

Methods

A cross-sectional mixed methods survey design was used.

Participants were asked to indicate their three most preferred terms out of a list of commonly used terms and to provide any extra comments.

Frequency analysis was employed to look at the preferences of terms for each rank.

Comments were analysed using principles of inductive thematic analysis.

Results

Eighty-seven patients with CFS completed a self-report survey.

The term “Persistent Physical Symptoms” was the most popular first choice term chosen by 20.7% of patients.

Terms containing the word “physical” were consistently more likely to be chosen.

Three main themes emerged from the thematic analysis:
1) Physical nature of the illness,
2) Stigma,
and
3) Evaluation of the terms,
giving a more in-depth understanding of the findings.

Conclusion
According to CFS patients, an umbrella term has to reflect the physical experience of MUS.
 
Introduction

[..]

However, some concerns arose in relation to the use of the word “distress”, as British participants were more likely than Danish and German participants to associate distress with a description of psychological states [11], suggesting that the meaning of a term can vary depending on language and cultural context.
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Labelling is potentially an important aspect of diagnosis. One purpose of it is to offer patients a legitimate “sick role”, and to validate the condition. The label confirms that the impairment is real and not imaginary [14]. Patients often gain relief when the various symptoms are given a label and this also unveils the different treatment options available to them [15].
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CFS patients frequently report that the term CFS trivialises the seriousness of this condition [18], as fatigue is only one of the many symptoms of this illness. Additionally, patients perceive that the consequences of fatigue are underestimated, because it is a common daily life experience of the healthy population [22].
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1. Physical nature of the illness:
This theme reflects the importance placed by participants on the tangible nature of MUS. Participants' stated that these conditions are real, with physical symptoms and consequences, as well as a clear biological cause.
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[..]

A number of participants explicitly used the words “imagined” and “real” (Unknown; Female, 45–54). Another participant (Unknown, 25–34) went further suggesting that science fails to validate the experience of MUS: “‘Medically Unexplained Physical Symptom’: it doesn't matter to patients whether science can or cannot currently explain or understand the causes of the symptoms when it comes to naming them. They are real to the patient.”
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[..]

Participants also suggested a number of additional terms that might be used. All included words such as “neurological” or “endocrine”, again emphasizing the biological attributions made by participants. Additionally, the majority of the suggested terms were classified as “syndromes” or “disorders”. For a full list of suggestions made by participants please see Appendix 3.
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Umbrella term

Some participants felt that an umbrella term would neither be useful nor appropriate (Female, 25–34; Female, 25–34; Female, 25–34), feeling that illnesses like CFS where no clear cause had been established were different both in manifestation and in aetiology:

“I am not sure if an ‘umbrella’ term is particularly useful considering that IBS is very different to non-cardiac chest pain, for example. It [umbrella term] does not give an idea of where in the body the symptoms are”
(Female, 25–34).

Comments like this frequently emerged in support of this theme:

“Ridiculous trying to lump the syndromes together” (Female, 25–34).

This clearly demonstrates that a term needs to reflect the experience, nature and symptoms of an illness to be considered acceptable by patients.
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healthcare professionals (HCPs)
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2. Stigma:

This theme revolves around the treatment and support participants felt they had received from others.

Many felt that HCPs had failed to validate the physical experience of MUS:
“the way doctors discuss symptoms [can be] unsympathetic” (Female, 45–54).

Another participant, (Female, 55–64), seemed to portray a feeling of disillusionment with the medical profession: “The medical profession is letting us down.”

This relates back to theme 1, feeling that the physical reality of MUS is unrecognised. The possible strain that this can have on the patient-HCP relationship can be seen in the quote below:

“Patients would rather doctors were honest and if they ‘don't know’ then say that rather than humiliating, frustrating and angering patients by subtly suggesting we seek psychiatric help…just because diagnostic tests (which doctors rely on too much) don't show anything to assist with diagnosis” (Female, 35–44).

This comment suggests that some HCPs may not effectively communicate the options available to patients with regard to treatment thereby creating a potential barrier between patients and HCPs. Another participant (Female, 45–54) conveyed a feeling of being misunderstood by the general public:
“It is essential for treatment development and research to increase awareness and understanding of symptoms throughout the general population.”
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Underlying meaning

Participants also provided feedback on the specific language used within the labels. Participants did not support the use of the word “syndrome”. There was both a lack of understanding as well as a concern that the word “implies [the illness is] bogus” (Female, 55– 64).

Another word that was mentioned by two participants was “Distress” (Female, 25–34 & Female, 65–74). The participants suggested that this term was negative, subjective, and diverted attention from the physical suffering of patients, linking back to theme 1.

Female (25–34): “‘Distress’ also sounds negative and may be alienating to those who feel too much emphasis is placed on their distress rather than the cause,”

Female (25–34) expressed a view that words such as “distress” and “complex” were unnecessarily emotive and could have a negative connotation that could be stigmatizing for patients. This suggests that while a label should reflect transparently the experience of an illness it should not create fear of it.
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Not sure about last point.
 
The findings from the survey showed that the most popular term was “Persistent Physical Symptoms”. The other most popular terms included the word “physical”, i.e. “Complex Physical Symptoms” and “Medically Unexplained Physical Symptoms”. The preference for terms including the word “physical” reflects the importance placed by the participants on the physical nature of such conditions. This is in line with previous findings, where MUS patients expressed dissatisfaction when diagnosed with incorrect psychiatric diagnoses [25]. As described by participants themselves, these symptoms are “real, and not imagined.” Despite the lack of a clear biological cause for CFS, patients will identify causes and will construct an illness identity.
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Our results overlap somewhat with the findings of Marks and Hunter [17]. They found the term “Persistent Physical Symptoms” to be the top preference, chosen by 20% of the sample, while “Body Distress Disorder” was one of the least liked terms.
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However, it is important to acknowledge that there are consistent cross-cultural differences in the preferences for MUS terms, as has been observed in relation to the word “distress” [11]. For example, labels containing theword “functional” are considered offensive by many providers in the US [8], but are accepted in the UK by patients, but not all HCPs [8].
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Another finding that emerged from the qualitative analysis was the consequence of a label in shaping HCPs and the general public's view of these conditions. Participants often felt a lack of empathy and understanding from HCPs. Indeed, a qualitative study comparing psychoeducation and Cognitive Behavioural Therapy (CBT) for CFS, found that validation was critical for patients, regardless of the effectiveness of treatment [27]. In line with the findings here, previous studies of CFS patients have consistently reported feeling blamed, dismissed and disbelieved by the medical profession [28,29]. In keeping with this perception fibromyalgia patients were prioritized and esteemed less by HCPs compared to conditions like myocardial infarctions, brain tumours and leukaemia [30]. Similarly, severity is also assumed from the type of treatment a patient is recommended. For example a CFS patient who is recommended a medical treatment is seen as being more disabled than someone who undergoes CBT with graded activity by HCPs [31]. This seems to suggest that the issues of recognition and stigma in the context of MUS are deep rooted. Consequently, changing a label might not necessarily translate into changes around the understanding and recognition offered by HCPs and others.
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Not sure about last point: it might help.
 
An appropriate label gives patients a language to discuss their complaints and experiences, as well as reassurance that there are other people suffering from the same physical symptoms [15]. A label can also help patients, HCPs and others to draw the distinction between the illness and the individual, contributing potentially to better outcomes and adjustment [15].
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no there is not a need for spending money on further research into this - some good points made by participants but this sort of issue could be addressed by working closely with patient organisations and doing a focus group or two and a report. Science funding needs to go on biomedical research not on what to call things to make them more acceptable for patients to swallow. Medically unexplained symptoms is a good description if something has not yet been explained. ME isn't fully explained but that doesn't make it medically unexplained so it isn't appropriate to call it that otherwise surely MS and Alzheimers would also fall into the unexplained umbrella.
 
Dolphin said:
There is a need for future research to explore whether an umbrella term is necessary at all and if so, what term would be most acceptable for patients, HCPs, and others.
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I'd forgotten that they made that point.

Since its release, there's been an attempt to present this paper as evidence that patients with CFS do support the use of the umbrella term 'Persistent Physical Symptoms'. I remember thinking when I read it that this study seemed designed to try to claim patient support for such a thing. It would have been pretty easy for them, in this study, to ask if patients wanted to be lumped in with all of these other 'MUS' patients and given on umbrella term, but they did not. Surely that's a better starting point than conducting a study on the assumption that such a term with patient support is needed, and then giving them a limited range of choices on what that term should be.
 
Esther12 said:
I'd forgotten that they made that point.

Since its release, there's been an attempt to present this paper as evidence that patients with CFS do support the use of the umbrella term 'Persistent Physical Symptoms'. I remember thinking when I read it that this study seemed designed to try to claim patient support for such a thing. It would have been pretty easy for them, in this study, to ask if patients wanted to be lumped in with all of these other 'MUS' patients and given on umbrella term, but they did not. Surely that's a better starting point than conducting a study on the assumption that such a term with patient support is needed, and then giving them a limited range of choices on what that term should be.
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See also:
https://www.s4me.info/index.php?thr...oms-the-views-of-cfs-patients.634/#post-10605
 
The most important point to make about the term “medically unexplained symptoms” (MUS) is that it names a social and clinical predicament, not a specific disorder (Kirmayer et al, Can J Psychiatry, 2004). A clinical entity with unknown pathology is typically defined by a set of symtoms and a number of exclusions. The value of such a case definition lies in its practical utility in distinguishing groups of people whose illnesses share the same causes or determinants of outcome, including response to treatment (Coggon et al, Int J Epidemiol, 2005).

The Wessely school has been trying to represent MUS as a clinical entity, but there is no good reason to believe that patients share causes or determinants of outcome simply because the pathology is unknown. There is actually no way to falsify a statement like "all MUS are purely psychological in nature", because as soon as our knowledge advances and pathophysiological processes are identified for a subset of patients in the MUS group, these patients by definition no longer have MUS. The entire concept of MUS as a clinical entity is nonsensical.
 
As a lot of these snippets enraged me I have one simple suggestion to improve the paper considerably.

Find every instance of 'felt' and replace with 'experienced' or similar synonym.
 
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