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A systematic exploration of the terminology used in the diagnosis and treatment of oropharyngeal dysphagia (swallowing difficulty) in the absence of a clear medical explanation

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Jennifer Short at North Bristol NHS Trust
Jennifer Short
Sam A Harding at North Bristol NHS Trust
Sam A Harding
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Abstract

Exploring the themes around terminology use in medically Unexplained Dysphagia (MUD) created from the first round of the Delphi methodology survey.
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A systematic exploration of the terminology used in the
diagnosis and treatment of oropharyngeal dysphagia
(swallowing difficulty) in the absence of a clear medical
explanation.
Jennifer Short and Sam Harding
What is the most appropriate
terminology to be used in
diagnosis and management of
‘medically unexplained’
dysphagia? (MUD)
Introduction
A wide range of terms to describe
MUD are used across many
specialties. This lack of consistent
terminology makes it difficult to draw
meaningful conclusion from the
literature and optimally manage these
patients.
Objectives
1. To explore consensus across
disciplines on appropriate
terminology regarding clients with a
‘medically unexplained’ dysphagia.
2. To investigate health professionals’
understanding of the current
terminology use and reasoning behind
this.
Methods
An online survey tool is being used to
deliver a 3 round Delphi questionnaire
to a range of medical and health
professionals. The consensus results
will be discussed in patient focus
groups.
Phase 1 of the Delphi survey is
complete and phase 2 is currently in
development.
Results
Word cloud proportionately represents range of terms from survey
Preliminary thematic analysis from Delphi round 1:
Terminology Aetiology
‘Functional’ is
the most
popular
Disagreement
and diversity of
terms
MUD Defined Essential key
concepts
2 sub-types;
neurological and
psychological?
Differing camps
for
understanding
mechanism
Most up to
date with
modern
understanding
Patient
preference
Recognised as
an
acknowledged
disorder
A range of
terms in use
Labels can
be unhelpful
Avoiding
negative
implications
This is real
No
malignancy
Consistency
of terms
This is
treatable
Software/
hardware
Interaction of
mind and
body
Sensitivity/
sensation
Maladaption
A review of the literature has failed to find evidence of the incidence and prevalence of MUD.
However, the umbrella diagnosis of functional neurological disorders is described as “among
the most common causes of neurological disability” with an incidence of 4 to 12 per 100 000
population per year and a prevalence of 50 per 100 000 population based on a community
registry. [1]. MUD reportedly accounted for 12 % of patients per year visiting an outpatient
clinic for dysphagia [2].
The literature review revealed that there was a wide range of terms used to define and
describe MUD. Terms used include unexplained dysphagia, Medically Unexplained
Oropharyngeal Dysphagia (MUNOD), psychogenic dysphagia, hysteria-conversion dysphagia,
conversion disorder, dissociative disorder, functional dysphagia, functional neurological
symptom disorder, non-organic dysphagia, globus hystericus, phagophobia or swallowing
phobia. [3, 4, 5, 6, 7, 8, 9, 2, 10]. This lack of consistent terminology makes it difficult to draw
any conclusions that can be meaningfully applied to this population. A recent scoping review
[11] showed that this is an under-researched area, with no current clinical guidelines
available. It highlighted the confusion due to multiple terms in the literature. This is likely to
impact on clinical practice, development of positive diagnostic criteria and professional
conversations regarding MUD.
Sample: Any health professional who has been involved in delivering a swallow diagnosis to
an adult patient with MUD. Questionnaire disseminated via UK professional bodies:
Royal College of Speech and Language Therapists (RCSLT),Association of British Neurologists
(ABN),Royal College of Physicians (RCP),ENT UK (The professional membership body that
represents Ear, Nose and Throat and its related specialities).
British Society of Gastroenterology (BSG),British Psychological Society (BPS),Association of
Clinical Psychologists UK (ACP UK),Royal College of General Practitioners (RCGP)
Codes and themes from phase 1 thematic analysis:
Central organising concepts:
‘Functional’ is the most popular term: Functional is the most used and most well supported
term used to talk about MUD
Disagreement and diversity of terms: A range of terms is currently in use and there is
disagreement on their appropriacy and meaning
MUD defined: There is general agreement on a definition of MUD “Dysphagia occurring in
the absence of demonstrable abnormalities in the swallow anatomy and neurology” which
includes an allowance of some abnormal physiology (unexplained) and a blurring of the
distinction between oropharyngeal and oesophageal.
Essential key concepts: There are important key concepts within any explanation or diagnosis
of MUD, regardless of terminology/ specialism.
2 sub-types – Neurological and psychological: There may be 2 sub-types of MUD, with one
more aligned to FND and one more aligned to psychological conditions.
Differing camps for understanding aetiology: There are several ways of understanding and
explaining the mechanism behind a presentation of MUD.
REFERENCES
1. Carson, A, Lehn, A. Epidemiology. Handbook of Clinical Neurology. 2016;139:47-60
Martino R, Pron G, Diamant N. Screening for oropharyngeal dysphagia in stroke:insufficient evidence for
guidelines. Dysphagia 2000; 15: 19-30
2. Verdonschot RJCG, Baijens LWJ, Vanbelle S, Florie M, Dijkman R, Leeters IPM, Kremer B Leue C. Medically Unexplained
Oropharyngeal dysphagia at the University Hospital ENT Outpatient Clinic for Dysphagia: A Cross-Sectional Cohort Study.
Dysphagia 2018 Jun5. DOI: 10.1007/s00455-018-9912-9
3. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 5th edition (DSM-V) Washington
DC: American Psychiatric Association 2013
4. Baumann, A and Katz, P.O. Functional Disorders of Swallowing in Handbook of Clinical Neurology, Vol 139 (3rd series)
Functional Neurological Disorders. M Hallett, J Stone and A Carson, Editors 2016
5. Espay AJ, Aybek S, Carson A, Edwards M, Goldstein LH, Hallett M, LaFaver K, LaFrance C, Lang AE, Nicholson T, Nielsen G,
Reuber M, Voon V, Stone J, Morgante F. Current Concepts in Diagnosis and Treatment of Functional Neurological
Disorders JAMA Neurology 2018
6. Stone J. Functional neurological disorders: the neurological assessment as treatment. Pract Neurol 2016; 16:7-17
7. Shapiro, J, Franko D, Gagne A. 1997. Phagophobia: A form of psychogenic dysphagia. A new entity. The Annals of otology,
Rhinology & Laryngology; 106, 4:286.
8. Stone, J and Edwards, M. How “psychogenic” are psychogenic movement disorders? Movement Disorders July 2011
Vol26, No 10
9. Vaiman M, Shoval G, Gavriel H. The electrodiagnostic examination of psychogenic swallowing disorders. Eur Arch
Otorhinolaryngol (2008) 265:663-668
10. Yeom J, Young Seop Song, Won Kyung Lee, Byung-Mo Oh, Tai Ryoon Han, Han Gil Seo. Diagnosis and Clinical Course of
Unexplained Dysphagia Annals of Rehabilitation Medicine 2016 Feb; 40(1): 95-101.
11. Barnett, C., Armes, J., Smith, C. Speech, language and swallowing impairments in functional neurological disorder: a
scoping review. IJLCD Dec 2018. doi:10.1111/1460-6984.12448
Overarchi
ng Theme
Terminology
Mechanisms/ aetiology
Themes
‘Functional’ is
the most
popular term
Disagreement and
diversity of terms
MUD
defined
Essential key
concepts
2 sub-types –
Neurological and
psychological
Sub
themes
1. Most up to
date with
modern
understandi
ng
2. Patient
preferenc
e
3. Recognis
ed as an
acknowle
dged
disorder
1. Range of terms
in use
2. Labels are
unhelpful
3. Avoiding
negative
implications
1. This is real
2. No
malignancy
3. Consistency
4. Treatable
Codes
1 Functional’ is
the/ a term in
use to describe
MUD
6 Functional
neurological
dysphagia, or
dysphagia in
FND are the
terms in use to
describe MUD
19 Functional as
a term was
specifically
taught or made
familiar by
colleagues
20 ‘Functional’
is term
preferred by
patients
23 Functional is
a recognised
term, aligned to
other functional
disorders, which
promotes
understanding
27 ‘Functional’
is good because
it is open about
causality
28 ‘Functional’
does not carry
stigma
29 Functional’
attempts to
define the
problem, based
on
biopsychosocial
model or
hardware/softw
are and
positive signs
31 Functional’
can connect to
support
networks
2The preference is to
describe the
presentation rather
than label
3‘Functional’ is a
dismissive term,
implies “all in the
head”
4‘functional overlay/
element’ is the
terminology in use
5‘psychogenic’ is the/
a term in use to
describe MUD
7‘unknown origin/
unexplained’ are
terms in use to
describe MUD
8‘non-specific’ is a term
in use to describe MUD
14 Psychogenic is out of
date
15 non-organic
dysphagia is a term in
use to describe MUD
21 Psychogenic is
appropriate/better
when there is a clear
connection to
psychological trigger
26 ‘Functional’ can be
misleading as has
multiple meanings
30 Medically
unexplained is a
misnomer and falsely
representative
32
Psychogenic/psycholo
gical terms may have
negative connotations
and imply not genuine
33 ‘Functional’ may
not be appropriate
within psychological/
psychiatric disorder
34 Psychogenic
implies factors which
may not be relevant
55 Non-organic”
suggests condition is
not real
36
Functional
dysphagia
= our
definition
or similar
38 MUD
can
present
with
altered
physiology
but still be
‘unexplain
ed’
39
Definition
of FND is
same but
should
include
lack of
damage to
brain/
nerves
40
Psychogeni
c = our
definition
or similar
41 Non-
organic
Dysphagia
= our
definition
42 Blurred
distinction
between
orophx and
oesophage
al
56
“overlay”
is when an
organic
presentati
on does
not explain
the whole
presentati
on
9 Consiste
ncy across the
team/professionals
is important
22 It is appropriate
to acknowledge
that we are
uncertain of
aetiology
24 Terms need to
be patient-centred
and tailored to
individuals
35 It is important
not to be
judgemental or
imply malingering
when discussing
diagnosis
37 It is important
to reassure that
the symptoms are
real and will be
taken seriously
45 Reassurance
that there is
nothing malignant
and other medical
causes have been
ruled out is
important
47 MUD is
treatable and
recovery possible
51 MUD is not rare
and is an
acknowledged
condition
35 Neurolog
ical specialties use
FND
36 There
may be at least 2
subtypes of MUD,
one more allied to
psychological trigger
and one more allied
to FND
17 MUD can be part
of a broader
psychological or
psychiatric disorder
33 ‘Function
al’ may not be
appropriate within
psychological/
psychiatric disorder
34 Psychogenic
implies factors
which may not be
relevant
43 MUD can be part
of a broader FND
54 Not all MUD
patients have
anxiety as a
component
https://www.nbt.nhs.uk/bristol-speech-language-therapy-
research-unit/bsltru-research/medically-unexplained-
dysphagia
... Difficulties in reconciling terms for these symptoms can undermine efforts to define clinical phenotypes, to collate data and to develop evidence-based treatments. [8][9][10] This document aims to focus on the elements of effective treatment, rather than on these complex issues of terminology and definition. In the interests of consistency, therefore, the term functional will be used throughout this document to refer to these disorders of communication, swallowing and cough. ...
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  • Jul 2021
  • J NEUROL NEUROSUR PS
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Current Concepts in Diagnosis and Treatment of Functional Neurological Disorders
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  • Jun 2018
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Diagnosis and Clinical Course of Unexplained Dysphagia
Article
Full-text available
  • Feb 2016
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Screening for Oropharyngeal Dysphagia in Stroke: Insufficient Evidence for Guidelines
Article
Full-text available
  • Feb 2000
There is no evaluation of the evidence for the screening of oropharyngeal dysphagia in stroke. We reviewed the literature on clinical screening for oropharyngeal dysphagia in adults with stroke to determine (a) the accuracy of different screening tests used to detect dysphagia defined by abnormal oropharyngeal physiology on videofluoroscopy and (b) the health outcomes reported and whether screening alters those outcomes. Peer-reviewed English-language and human studies were sought through Medline (from 1966 to July 1997) by using the key words cerebrovascular disorders and deglutition disorders, relevant Internet addresses, and extensive hand searching of bibliographies of identified articles. Of the 154 sources identified, 89 articles were original, peer-reviewed, and focused on oropharyngeal dysphagia in stroke patients. To evaluate the evidence, the next selection identified 10 articles on the comparison of screening and videofluoroscopic findings and three articles on screening and health outcomes. Evidence was rated according to the level of study design by using the values of the Canadian Task Force on Periodic Health Examination. From the identified screening tests, most of the screenings were related to laryngeal signs (63%) and most of the outcomes were related to physiology (74%). Evidence for screening accuracy was limited because of poor study design and the predominant use of aspiration as the diagnostic reference. Only two screening tests were identified as accurate: failure on the 50-ml water test (likelihood ratio = 5.7, 95% confidence interval = 2.5–12.9) and impaired pharyngeal sensation (likelihood ratio = 2.5, 95% confidence interval = 1.7–3.7). Limited evidence for screening benefit suggested a reduction in pneumonia, length of hospital stay, personnel costs, and patient charges. In conclusion, screening accuracy needs to be assessed by using both abnormal physiology and aspiration as diagnostic markers for dysphagia. Large well-designed trials are needed for more conclusive evidence of screening benefit.
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Speech, language and swallowing impairments in functional neurological disorder: a scoping review
Article
  • Dec 2018
Background Functional neurological disorder (FND) is common across healthcare settings. The Diagnostic and Statistical Manual of Mental Disorders states that speech and swallowing symptoms can be present in FND. Despite this, there is a dearth of guidelines for speech and language therapists (SLTs) for this client group. Aims To address the following question in order to identify gaps for further research: What is known about speech, language and swallowing symptoms in patients with FND? Methods & Procedures A scoping review was conducted. Six healthcare databases were searched for relevant literature: CINAHL PLUS, MEDLINE, ProQuest Nursing and Allied Health Professionals, Science Citation Index, Scopus, and PsychINFO. The following symptoms were excluded from the review: dysphonia, globus pharyngeus, dysfluency, foreign accent syndrome and oesophageal dysphagia. Main Contribution A total of 63 papers were included in the final review; they ranged in date from 1953 to 2018. Case studies were the most frequent research method (n = 23, 37%). ‘Psychogenic’ was the term used most frequently (n = 24, 38%), followed by ‘functional’ (n = 21, 33%). Speech symptoms were reported most frequently (n = 41, 65%), followed by language impairments (n = 35, 56%) and dysphagia (n = 13, 21%). Only 11 publications comment on the involvement of SLTs. Eight papers report direct speech and language therapy input; however, none studied the effectiveness of speech and language therapy. Conclusions & Implications Speech, language and swallowing symptoms do occur in patients with FND, yet it is a highly under‐researched area. Further research is required to create a set of positive diagnostic criteria, gather accurate data on numbers of patients with FND and speech, language or swallowing symptoms, and to evaluate the effectiveness of direct speech and language therapy involvement.
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Epidemiology
Article
  • Jan 2016
The epidemiology of functional neurologic disorders (FND) is complex and has been hampered over the years by a lack of clear definition, with previous definitions struggling with an uneasy mix of both physical and psychologic components. The recent changes in DSM-5 to a definition based on positive identification of physical symptoms which are incongruent and inconsistent with neurologic disease and the lack of need for any associated psychopathology represent a significant step forward in clarifying the disorder. On this basis, FND account for approximately 6% of neurology outpatient contacts and putative community incidence rates of 4-12 per 100 000 per annum. Comorbid neurologic disease occurs in around 10% of cases. The diagnosis is reliable, with revision rates less than 5%. Of note, this revision rate was consistent prior to the widespread utilization of computed tomography and magnetic resonance imaging. FND symptoms are disabling and associated with significant distress. They are more common in women and have a peak incidence between the ages of 35 and 50; however the presentation is common in men and throughout the lifespan. The issues surrounding case definition, ascertainment, misdiagnosis, and risk factors are discussed in detail.
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Functional neurological disorders: The neurological assessment as treatment
Article
  • Oct 2014
On considère classiquement que, chez les patients présentant des symptômes neurologiques fonctionnels, le rôle du neurologue se limite à poser un diagnostic, exclure une « pathologie » et annoncer que les symptômes sont « non organiques » ou « psychogènes. Dans cet article, j’explique que, durant la mise au point de routine habituellement réalisée chez un patient présentant des symptômes neurologiques fonctionnels, le neurologue a de nombreuses occasions de jouer un rôle thérapeutique de premier plan. Ces occasions se présentent lors de l’anamnèse, de l’examen neurologique et, surtout, en fin de consultation. Les éléments de discussion les plus utiles qu’il peut fournir sont les suivants : (i) insister sur le fait que les symptômes sont bien réels, non exceptionnels et potentiellement réversibles ; (ii) expliquer qu’il pose un diagnostic positif et non un diagnostic d’exclusion ; (iii) donner un avis simple à propos des techniques de distraction, d’autosuggestion ainsi que sur les sources d’information ; (iv) donner accès à un service de physiothérapie ou de psychologie adapté ; (v) proposer au patient une consultation de suivi. Je montrerai également dans quelle mesure les nouveaux critères diagnostiques du DSM-5 et les modifications proposées par l’ICD-11 faciliteront la tâche du neurologue dans sa prise en charge des patients présentant des symptômes fonctionnels, dans le cadre d’une approche multidisciplinaire en consultation de routine.
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How "Psychogenic" Are Psychogenic Movement Disorders?
Article
  • Jul 2011
  • MOVEMENT DISORD
What does the word ‘‘psychogenic’’ really mean in ‘‘psychogenic movement disorder’’ (PMD)? This is the term used most commonly in clinical practice by members of the Movement Disorder Society (MDS) and in scientific publications. In a survey of 519 MDS members, 83% said it was their preferred term with colleagues even if only 59% preferred to use it with patients. 1 Yet the same survey showed that only 18% of respondents used the presence of psychological factors to make the diagnosis and that psychiatrists often sent patients back querying the diagnosis. Just because an abnormal movement might be distractible, variable, or responsive to cognitive behavioral therapy or placebo, does that mean that the only possible mechanism for its production is psychological difficulty and distress? This seems an inappropriately narrow formulation, and yet use of the word psychogenic continues. So maybe it is more to do with the characteristics of the patient that makes the problem psychogenic? The clinical stereotype of the patient with a psychogenic movement disorder patient is a woman in her 30s or 40s with a history of many other physical symptoms, depression, and anxiety. A classic psychodynamic formulation might seek a history of childhood abuse, a tendency to dissociation and a recent life event to explain the reactivation of that tendency. Indeed, without a relevant psychological stressor, such a patient would not even qualify for a diagnosis of conversion disorder (300.11) in the psychiatric manual of diagnosis, Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV).
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Phagophobia: A form of Psychogenic Dysphagia a New Entity
Article
  • May 1997
There is a group of patients presenting with either acute or chronic dysphagia secondary to fear of swallowing. We have termed this entity phagophobia. It is characterized by various significant swallowing complaints in the face of normal findings on head and neck examination, oropharyngeal swallowing videofluoroscopy, and standard barium swallow study. Ten patients who received diagnoses of phagophobia after a full evaluation at our swallowing disorders center are presented. Each patient was then evaluated by a psychologist, and an attempt at therapy was undertaken. We discuss the specific clinical features, assessment, and treatment of this frequently misdiagnosed disorder.
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The electrodiagnostic examination of psychogenic swallowing disorders
Article
  • Dec 2007
The article discusses the usefulness and technique of investigation of suspected psychogenic dysphagia by surface electromyography (sEMG) of deglutition. Thirty-two patients with suspected psychogenic dysphagia (Group 1) and 40 healthy individuals (Group 2) were involved in the study. The timing, amplitude and graphic patterns of activity of the masseter, submental, infrahyoid and trapezius muscles were examined during voluntary single water swallows ("normal"), and continuous drinking of 100 cc of water. The muscle activity in oral, pharyngeal and initial oesophageal stages of swallowing was measured, and graphic records were evaluated in relation to timing and voltage. Globus hystericus was found in only 14 patients of the Group 1 (43.75%). The main sEMG pattern of psychogenic dysphagia is a lack of any pathologic changes of timing, voltage and graphic patterns of deglutition. In 28% of cases tension of skeletal muscles not involved in deglutition was observed during single swallowing (vs. 0% in controls). Psychogenic/hysteria-conversion dysphagia has no pathologic sEMG patterns associated with deglutition. Skeletal muscle tension during deglutition, being observed in some cases has no connection with the act of swallowing itself. Surface EMG, being non-invasive and non-radiographic, can be used for screening purposes for patients with dysphagia thus avoiding expensive and time-consuming investigation.
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Medically Unexplained Oropharyngeal dysphagia at the University Hospital ENT Outpatient Clinic for Dysphagia: A Cross-Sectional Cohort Study
  • Jan 2018
  • Dysphagia
  • Rjcg Verdonschot
  • Lwj Baijens
  • S Vanbelle
  • M Florie
  • R Dijkman
  • Ipm Leeters
  • C Kremer B Leue
Verdonschot RJCG, Baijens LWJ, Vanbelle S, Florie M, Dijkman R, Leeters IPM, Kremer B Leue C. Medically Unexplained Oropharyngeal dysphagia at the University Hospital ENT Outpatient Clinic for Dysphagia: A Cross-Sectional Cohort Study. Dysphagia 2018 Jun5. DOI: 10.1007/s00455-018-9912-9