Comparison of Classification and Terminology Systems

Post #340 Shortlink: https://wp.me/pKrrB-4oG

We continue to see some confusion amongst ME and CFS patients, advocates and commentators around classification systems — what they are used for, whether they are mandatory for WHO member states, which terms are included in which systems and which countries use which versions.

In May, Suzy Chapman (DxRevisionWatch.com) and Mary Dimmock prepared a document to assist stakeholders in navigating the complexities of the disease classification and terminology systems.

 

Comparison of Classification and Terminology Systems

The purpose of this document is to summarize the key classification and terminology systems that are used internationally to capture information about disorders and diseases for the purposes of global mortality and morbidity tracking. These systems are also used for medical records, including EMRs (electronic medical records), in primary and secondary care.

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The most recent version of this document can be downloaded here Version 3 | July 2018

 

Document revision history:

Comparison of Classification and Terminology Systems Version 1

May 2018


 

Comparison of Classification and Terminology Systems Version 2

June 2018 – Updated to reflect release of an advance preview version of ICD-11 on June 18, 2018.


 

Comparison of Classification and Terminology Systems Version 3

July 2018 – Revised for clarity.

In Versions 1 and 2, we stated that the ICPC-2 Danish extension [1] included the term, Bodily distress syndrome. The document in reference [2] clarifies that whilst not included in the Danish extension, a diagnosis of functional disorder or a diagnosis of bodily distress syndrome can be coded for using the ICPC-2 P75 Somatoform forstyrrelse (Somatoform disorder) term.

1 ICPC-2 Danish extension
2 Funktionelle lidelser (Functional Disorders), Clinical guideline for general practice, Danish College of General Practitioners, 2013 (English translation, 2016). Page 8: What is the patient’s illness called?

 

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Comparison of SSD, BDD, BDS, BSS in classification systems

Post #338 Shortlink: https://wp.me/pKrrB-4ni

The World Health Organization (WHO) released the next edition of the International Classification of Diseases (ICD-11) on June 18.

WHO news release.

ICD-11 for Mortality and Morbidity Statistics (ICD-11 MMS) version 2018 is an “advance preview” that will allow countries to plan for implementation, prepare translations and begin training health professionals.

No countries will be ready to transition from ICD-10 to ICD-11 for several years. The new edition is scheduled to be presented at the World Health Assembly (WHA) in May 2019 for adoption by Member States, but WHA endorsement won’t come into effect until January 1, 2022.

After that date, Member States can begin using the new edition for data reporting but there is no mandatory implementation date and for a period of time, the WHO will be collecting data recorded using both ICD-10 and the new ICD-11 code sets.

I’ll be posting key links and information on the release of this “advance preview” in future posts. In the meantime, here’s the current schedule:

 

Bodily distress disorder

For the main edition of ICD-11, most of ICD-10’s Somatoform disorders and Neurasthenia have been replaced with a single new diagnostic category called Bodily distress disorder [1].

The Bodily distress disorder term was added to the ICD-11 drafting platform in early 2012 and has been the only disorder construct under consideration for the main edition of ICD-11 [2][3].

 

SSD? BDD? BDS? BSS?

We are still seeing a good deal of confusion between ICD-11’s defining of Bodily distress disorder (BDD) and Per Fink’s Bodily distress syndrome (BDS) disorder construct [4][5].

To assist stakeholders in navigating the complexities of nomenclature and classification, Dx Revision Watch and Mary Dimmock have prepared a document comparing the key features of:

DSM-5’s Somatic symptom disorder (SSD)

ICD-11’s Bodily distress disorder (BDD)

Fink et al. (2010) Bodily distress syndrome (BSD)

Bodily stress syndrome (BSS), as proposed for the ICD-11 PHC

 

You can download a copy of the comparison table and notes, here:

Comparison of SSD, BDD, BDS, BSS in classification systems

Version 1 | July 2018

Download PDF

https://dxrevisionwatch.files.wordpress.com/2018/07/comparison-of-ssd-bdd-bds-bss-in-classification-systems-v1.pdf

 

References:

1 Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry. 2012 Dec;24(6):556-67. doi: 10.3109/09540261.2012.741063. [PMID: 23244611]

2 Gureje O, Reed GM. Bodily distress disorder in ICD-11: problems and prospects. World Psychiatry. 2016 Oct;15(3):291-292. doi: 10.1002/wps.20353. [PMID: 27717252]

3 ICD-11 for Mortality and Morbidity Statistics (ICD-11 MMS) 2018 Release, Version for preparing implementation. Accessed July 20, 2018 https://icd.who.int/browse11/l-m/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f767044268

4 Fink P, Schröder A. One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders. J Psychosom Res. 2010 May;68(5):415-26. [PMID: 20403500]

5 Syndromes of bodily distress or functional somatic syndromes – Where are we heading. Lecture on the occasion of receiving the Alison Creed award 2017, Fink, Per. Journal of Psychosomatic Research, Volume 97, 127 – 130
https://www.jpsychores.com/article/S0022-3999(17)30445-2/fulltext
Lecture slides: http://www.eapm2017.com/images/site/abstracts/PLENARY_Prof_FINK.pdf

Why is this proposal for the G93.3 legacy terms for ICD-11 so important?

Post #336 Shortlink: http://wp.me/pKrrB-4hc

A copy of this post in PDF format is available here

1 Why is this proposal for ICD-11 so important?

1.1 The International Statistical Classification of Diseases and Related Health Problems (ICD) is the standard diagnostic classification of diseases for use in epidemiology, health management, clinical practice and reimbursement. ICD-10 has been translated into 43 languages and is used by WHO member states in over 100 countries.

It provides a common language for reporting and monitoring the incidence and prevalence of diseases and other health problems. This allows for global comparison and data sharing in a consistent, standardized way between hospitals, regions and countries and over periods of time.

ICD is used to report and summarize an episode of care after the event. Data recorded on many types of medical information and other records, including death certificates, provides the basis for analyses of national mortality and morbidity statistics by WHO member states, which are used to inform decision-makers and commissioners and to monitor health related spending.

Users include physicians, nurses, allied health care providers, researchers, health information managers and technology workers, coders, policy-makers and insurers [1].

1 World Health Organization

ICD-11 is an electronic product designed to be used in computerized health information systems and will link to other globally used clinical terminology systems, like SNOMED CT.

Inappropriate classification of the G93.3 “legacy” categories for ICD-11 will negatively influence perceptions of the disease and the clinical care that patients receive throughout the world ‒ with implications for service commissioning, the types of medical investigations and treatments that clinicians are prepared to consider and medical insurers prepared to fund, the provision of welfare benefits, social care, disability adaptations, education and workplace accommodations.

It is crucial that international organizations, their clinical and research allies and patient and advocate stakeholders take some time to review our proposal, register with the Beta draft and submit a considered response. Over 45 stakeholder organizations have already commented in support.

1.2 After four years of uncertainty, it’s important that the G93.3 “legacy” terms are included and appropriately classified for the initial 2018 release of ICD-11

Although revision of ICD-10 has been underway since 2007, the work group with responsibility for the G93.3 categories has yet to reach consensus over how these terms should be classified for the new edition. Since early 2013, there have been no proposals in the public version of the ICD-11 Beta draft for stakeholders to review, input into or comment on.

The terms were finally restored to the Beta draft on March 26, but with this caveat: “While the optimal place in the classification is still being identified, the entity has been put back to its original place in ICD.”

Evidently, the work group has not yet reached consensus (or if it has, has not reached consensus with the WHO classification experts and Joint Task Force, to which it reports).

1.3 Why is the timing so critical?

In order to present an initial version of ICD-11 to the World Health Assembly in May 2018, the classification will need to be finalized by the end of this year. For proposals to be considered for inclusion in the 2018 release, they were required to be submitted by a March 30 deadline.

That leaves us with this situation:

  • virtually no information about what the work group might be considering;
  • having missed the March 30 deadline, no indication of whether any proposals that might be released by the work group between now and the end of the year would be included in the initial 2018 release or rolled forward for consideration for inclusion in the 2019 release;
  • if no consensus has been reached before the end of the year, whether the classification would go forward with the “placeholder” listing or whether the terms would be omitted from the initial 2018 release.

Given the uncertainties, it was crucial we submit an alternative option. Stakeholders need to submit comments as soon as possible as it’s not clear whether there is a cut off point for consideration of comments on proposals that met the March 30 deadline.

1.4 Classification is important for protection against misdiagnosis and medical mismanagement

Prior to July 2015 (in the case of SNOMED CT) and prior to April 2016 (in the case of the UK Read Codes CTV3 primary care terminology system) both terminology systems had CFS, ME and their synonym terms dual classified under mental health disorders.

The WHO’s unmodified ICD-10 does not include CFS in the Tabular List, only in the Index. But in the Tabular List, ICD-10 includes several other coded terms which have been misapplied to CFS and ME patients, notably, the various ICD-10 Somatoform disorders categories and Fatigue syndrome, which is coded to Neurasthenia.

Misapplication of these codes has been used to deny patients access to appropriate medical care, to secondary referrals, investigations, emergency treatment, benefits, social care and disability services and in some cases, used to section patients for psychiatric treatment against their will.

Families are still being referred to social services and child protection agencies. Children and young people continue to be removed  from parental care because an existing diagnosis of CFS or ME has been contested or because they have been wrongly diagnosed with “Pervasive refusal syndrome” or as “school refusers,” or their parents accused of “Factitious disorder imposed on another.”

The Somatoform disorders, Neurasthenia and Fatigue syndrome are being replaced for ICD-11 with a new, single “Bodily distress disorder (BDD)” category which is close to the DSM-5 “Somatic symptom disorder (SSD).” BDD poses the same threat to CFS and ME patients as DSM-5’s SSD.

The Netherlands and Germany have witnessed the roll-out of guidelines and services for “MUS” and for “functional somatic syndromes.”

Already in use in Denmark, in clinics and research, Per Fink seeks to colonize Europe with the “Bodily distress syndrome” diagnostic construct, which subsumes and replaces CFS, ME, IBS and FM.

Last year, the Ministry of Science and Research, Hamburg, Germany, provided funding for EURONET-SOMA (European Network to improve diagnosis, treatment and health care for patients with persistent somatic symptoms) comprising a panel of 29 researchers from Denmark, the Netherlands, Sweden, Norway, Latvia, Belgium, United Kingdom, Germany and Russia, to develop a joint research agenda and work towards a common understanding of the terminology, conceptualization and management of “persistent somatic symptoms” and for interdisciplinary agreement on a consistent diagnostic classification.

In the UK, “Medically unexplained symptoms (MUS)” and “Persistent physical symptoms (PPS)” services are proliferating. Funding is being made available for integrated IAPT (Improving Access to Psychological Therapies) services delivering CBT and other therapies for “MUS”; in some cases, bids are being invited specifically for developing IAPT CBT or CBT/GET for CFS patients. One NHS Trust had invited Per Fink and his colleagues over to the UK to train up local GPs in the TERM model.

In at least one part of the country, a specialised CFS service has been decommissioned in order to save money and put out to tender for a combined IAPT type service for CFS and chronic pain.

A new “Joint Commissioning Panel for Mental Health Guidance for commissioners of services for people with medically unexplained symptoms” guideline was published in February, in which CFS and ME are included as “functional somatic syndromes” [2].

2 Guidance for commissioners of services for people with medically unexplained symptoms February 2017

The push to commission “MUS” services is relentless. UK patients have reported having their CFS, ME diagnoses challenged by their practitioners and re-diagnosed with “MUS” or with a mental health disorder.

Patients need protection: the G93.3 “legacy” terms must be appropriately classified for ICD-11; safeguarded with reciprocal exclusions for “Fatigue” and “Bodily distress disorder” and not secondary parented under inappropriate chapters or parent classes
.

Extract from ICD-11 Beta Proposal Q & A Suzy Chapman, April 2017 version 2

Key links

For a summary of our proposal and links for submitting comment via the Beta draft see: A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two

A PDF Q & A for our proposal can be downloaded here

A copy of this post in PDF format is available here

Comment submitted to ICD-11 Topic Advisory Group for Mental Health re: Bodily distress disorder

Post #323 Shortlink: http://wp.me/pKrrB-465

There are two ways in which stakeholders can submit comments on proposals in the ICD-11 Beta draft or make formal suggestions for changes or additions to the draft:

by selecting a disorder or disease term and submitting a comment on the proposed ICD-11 Title term, on the proposed Definition text (if a Definition has already been populated), or commenting on the lists of Synonyms, Inclusions, Exclusions or on any other Content Model descriptors. Users may also leave replies to comments submitted by other users or invite others to participate in threads;

by selecting a disorder or disease term and suggesting changes to the classification or enhancement of existing content by proposing Definition texts, additional Synonyms or Exclusions, additional child entities, changes to existing parent/child hierarchies or deletions of existing entities – ideally supported with rationales and references. Proposals for changes or suggestions for modifications are submitted via the Proposals Mechanism platform. This platform also supports user comments. Once submitted, the progress of a proposal can be tracked.

To register for interaction with the Beta draft see User Guide: Information on registering and signing in

To comment on existing proposals see User Guide: Commenting on the category

To suggest changes or submit new proposals see User Guide: Proposals

At the time of writing, the Beta draft is subject to a frozen release (frozen May 31, 2015) but this does not prevent registered users from continuing to commenting on the ICD-11 Beta draft or from submitting proposals via the Proposals Mechanism.

Comment submitted to TAG Mental Health in May re: Bodily distress disorder

On May 2, 2015, I posted a commentary via the ICD-11 Beta platform Comment facility. As one needs to be registered in order to read/make comments and submit proposals, I have pasted a copy, below.

Once uploaded, Comments and Proposals are screened and forwarded to the appropriate Topic Advisory Group (TAG) Managing Editors for their consideration. In this case, my comment will have been forwarded to the Topic Advisory Group for Mental Health.

Some of the points raised, below, had already been raised by me, either via the Beta platform or directly with ICD Revision personnel. But it may be advantageous to consolidate these points within the one comment for two reasons:

Firstly, the level of global concern around ICD-11 proposals by the WHO ICD-11 Working Group on Somatic Distress and Dissociative Disorders for a new disorder construct, currently proposed to be called “Bodily distress disorder (BDD),” and also for the alternative proposals of the ICD-11 Primary Care Consultation Group.

Secondly, the unsoundness of introducing into ICD a new disorder category that proposes to use terminology which is already closely associated with a conceptually divergent disorder construct isn’t being given due attention in journal papers or editorials and has yet to be acknowledged or addressed by the ICD-11 subworking group responsible for this recommendation.

 

Click link for PDF document   Chapman BDD Submission May 2015

Comment, Bodily distress disorder

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/767044268?showcomment=_4_id_3_who_3_int_1_icd_1_entity_1_767044268 [Log in required]

Suzy Chapman 2015-May-02 – 20:43 UTC

It should be noted that earlier this year, TAG Mental Health added the new DSM-5 disorder term “Somatic symptom disorder” under Synonyms to “Bodily distress disorder (BDD).”

I welcome affirmation that BDD, as defined by ICD-11 Beta, shares common conceptual features with DSM-5’s SSD.

However, as with “Somatic symptom disorder”, the proposed “Bodily distress disorder” diagnosis is unsupported by any substantial body of evidence for its likely validity, safety and acceptability. We [Allen Frances and Suzy Chapman, 2012-13] have called for a higher standard of evidence and risk-benefit analysis for ICD Revision [1][2][3].

BDD’s characterization, as entered into the Beta draft and as described by Gureje and Creed (2012), is far looser than the (rarely used) definitions of Somatization disorder in DSM-IV and in ICD-10 [4].

BDD broadens the diagnosis to include those where a diagnosed general medical condition is causing or contributing to the symptom(s) if the degree of attention is considered excessive in relation to the condition’s nature and progression. Like SSD, the diagnosis does not require symptoms to be “medically unexplained” but instead refers to any persistent and clinically significant somatic complaint(s) with associated psychobehavioural responses: excessive thoughts, feelings and behaviours. There were long-standing concerns for the over-inclusiveness of DSM-IV’s Undifferentiated somatoform disorder.

BDD’s three severity specifiers rely on highly subjective clinical decision making around loose and difficult to measure cognitions; as with SSD, there are considerable concerns that lack of specificity will expose patients to risk of misdiagnosis, missed or delayed diagnosis, misapplication of a mental disorder, iatrogenic disease and stigma.

Whether the term “Bodily distress disorder” (or “Body distress disorder,” as Sudhir Hebbar [a psychiatrist who had left an earlier comment on the Beta draft in respect of the proposed BDD name and disorder construct] has suggested) is used for this proposed replacement for the Somatoform disorder categories, F45.0 – F45.9, plus F48.0 Neurasthenia, both the disorder conceptualization and the terminology remain problematic.

The terms “Bodily distress disorder” and “Bodily distress syndrome” (Fink et al, 2010) are already being used synonymously in the literature.

The terms are used interchangeably in papers by Fink and colleagues from around 2007 onwards [5] and by Creed, Guthrie et al, in 2010 [6]. They are used interchangeably by Professor Creed in symposia presentations.

In a September 2014 editorial by Rief and Isaac [7] the term “Bodily distress disorder” has been employed throughout, whereas the construct that Rief and Isaac are actually discussing is the Fink et al (2010) BDS disorder construct – not the “BDD” construct, as defined in the Beta draft – which the authors do not discuss, at all.

According to the Beta draft Definition and BDD’s three severity characterizations (Mild; Moderate; Severe), the WHO ICD-11 Working Group on Somatic Distress and Dissociative Disorders (the S3DWG) defines “Bodily distress disorder” as having strong construct congruency and characterization alignment with DSM-5’s “Somatic Symptom Disorder” and poor conceptual alignment with Fink et al’s, already operationalized, “Bodily distress syndrome” [8].

If, in the context of ICD-11 usage, the S3DWG’s proposal for a replacement for the Somatoform disorders remains for a disorder model with greater conceptual concordance with the DSM-5 SSD construct there can be no rationale for proposing to name this disorder “Bodily distress disorder.”

There is significant potential for confusion over disorder conceptualization and for disorder conflation if the S3DWG’s proposed replacement for the Somatoform disorders has greater conceptual alignment with the SSD construct but is assigned a disorder name that sounds very similar to, and is already being used interchangeably with an operationalized, but divergent construct and criteria set.

Additionally, the acronym “BDD” is already in use to indicate Body Dysmorphic Disorder.

If ICD-11 intends to proceed with the BDD construct following field test evaluation, and despite the lack of a body of evidence for validity, safety and acceptability, then an alternative disorder term needs to be assigned.

In a 2010 paper, Creed and co-authors advanced that “Somatic symptom disorder is not a term that is likely to be embraced enthusiastically by doctors or patients; it has an uncertain core concept, dubious wide acceptability across cultures and does not promote multidisciplinary treatment” and they expressed a preference for the term, “bodily distress syndrome/disorder” [6].

I have no evidence that Prof Creed has changed his opinions about SSD since the publication of DSM-5 and perhaps he remains wedded to the “Bodily distress disorder” term (and wedded to the BDS construct) and is reluctant to relinquish the term.

Creed, Henningsen and Fink acknowledge that Fink et al’s (2010) BDS construct is very different to DSM-5’s SSD; that BDS and SSD have very different criteria and that they capture, or potentially capture, different patient populations [9].

Budtz-Lilly, Fink et al (In Press) outline some of the conceptual differences between SSD and BDS:

“The newly introduced DSM-5 diagnosis, somatic symptom disorder (SSD), has replaced most of the DSM-IV somatoform disorder subcategories [10]. The diagnosis requires the presence of one or more bothering somatic symptoms of any aetiology and is not based on exclusion of any medical condition (…) BDS and SSD represent two very conceptually different diagnoses. BDS is based on symptom pattern recognition only, and symptoms are thought to be caused by hyperactivity in the central nervous system, whereas SSD criteria are based on prominent positive psycho-behavioural symptoms or characteristics, but no hypothesis of aetiology. BDS is assessed without asking patients about psychological symptoms.” [10]

In order to fulfill the clinical criteria of BDS, the symptom pattern may not be better explained by another disease. Whereas the SSD diagnosis may be applied to a heterogeneous group of patients: as a “bolt-on” mental health diagnosis for patients with, for example, cancer, cardiovascular disease, diabetes and chronic pain conditions, or to patients with so-called specialty-specific functional somatic syndromes, or to patients with “functional symptoms”, if the criteria are otherwise met.

SSD, then, clearly cannot be BDS. And if the S3DWG’s BDD is close in conceptualization and criteria to SSD, then the S3DWG’s BDD cannot be BDS, either. But the terms BDD and BDS are already used interchangeably outside ICD-11.

What is the S3DWG rationale for proposing to use this disorder term when the group is aware that outside the context of ICD-11 Beta proposals, the term is synonymously used with an already operationalized, but divergent disorder construct?

Whatever the group’s justification, the term is clearly inappropriate; it needs urgent scrutiny beyond the S3DWG group and I call on TAG Mental Health and the Revision Steering Group to review the BDD disorder descriptions in the context of the group’s current choice of terminology.

But the waters get even muddier:

Possibly Sudhir Hebbar and other users of the Beta platform are unaware that in addition to the 17 member S3DWG subworking group’s proposals, the 12 member Primary Care Consultation Group (PCCG) is also charged with advising ICD-11 on the revision of the ICD-10 Somatoform disorders framework and disorder categories.

The 28 mental disorders approved for inclusion in the abridged ICD-11 primary care version will require an equivalent category within the core edition.

The Primary Care Consultation Group [chair, Prof, Sir David Goldberg] has proposed an alternative construct which it proposes to name, “Bodily stress syndrome (BSS)”. The PCCG’s “BSS” draws heavily on the Fink et al (2010) “Bodily distress syndrome” disorder construct and criteria [8][11].

(NB: Rief and Isaac [7] question the justification of the BDS construct for inclusion within a mental disorder classification due to the absence of requirement for positive psychobehavioural features. In 2012, the PCCG’s proposed “BSS” had included some psychobehavioural features to meet the criteria, tacked onto an essentially BDS-like model. Whether this modification was intended as a nod towards DSM-5’s SSD or to legitimise inclusion of a BDS-like model/criteria set within a mental disorder classification is not discussed within the group’s 2012 paper. With no recent update on proposals available, I cannot confirm whether the PCCG’s adapted BDS retains these additional psychobehavioural features.)

Budtz-Lilly, Fink et al (In Press) write:

“In the current draft, the ICD-11 primary care work group has included these [BDS] criteria in their suggestion for a definition of bodily (di)stress syndrome with minor adaptations.” [10] (The paper does not specify what these “minor adaptations” are.)

The authors go on to state:

“Furthermore the ICD-11 somatoform disorder psychiatry work group has announced that the term ‘bodily distress disorder’ will be used for the diagnosis.”

Here, one assumes the authors are referring to the S3DWG subworking group. It is disingenuous of the authors to imply that the S3DWG is onside with the PCCG’s proposals, whilst omitting any discussion of the core differences between the two groups’ proposed disorder constructs and criteria.

According to Ivbijaro and Goldberg (2013) the Primary Care Consultation Group’s (adapted “BDS”) construct has been progressed to field tests [12].

In his September 2014 presentation at the XVI World Congress of Psychiatry, in Madrid, Prof Oye Gureje confirmed that the S3DWG’s “Bodily Distress Disorder” is also currently a subject of tests of its utility and reliability in internet- and clinic-based studies.

So both sets of proposals are undergoing field testing. But since the proposed full disorder descriptions, criteria, differential diagnoses, exclusions etc have not been public domain published and because no progress reports have been issued by either work group since 2012, stakeholders are still unable to scrutinize and compare the two sets of current proposals, side by side.

Significant concerns remain around the deliberations of these two working groups:

a) their lack of transparency: there have been no papers or progress reports published on behalf of either group since 2012; the key Gureje and Creed 2012 paper remains behind a paywall;

b) no rationale has been published for the S3DWG’s proposal to call its proposed construct “BDD” when it evidently has greater conceptual concordance with SSD and poor concordance with Fink et al’s BDS, for which the “BDD” term is already in use, synonymously; there has been no discussion by either group for the implications for construct integrity;

c) it remains unclear whether the S3DWG’s “BDD” will incorporate Exclusions for CFS, ME, Fibromyalgia and IBS, which are currently discretely coded for within ICD-10, and which are considered may be especially vulnerable to misdiagnosis or misapplication of a diagnosis of “BDD”, under the construct as it is currently proposed;

[Dr Geoffrey Reed has said that he cannot request Exclusions until the missing G93.3 legacy terms have been added back into the Beta draft, but at such time, he would be happy to do so.]

d) the PCCG’s “BSS” proposed diagnosis appears to be inclusive of children [11] but there is currently no information from the S3DWG on whether their proposed “BDD” diagnosis is also intended to be applied in children and young people;

e) there is no body of independent evidence for the validity, reliability and safety of the application of “SSD”, “BDD”, “BSS” or Fink et al’s (2010) BDS in children and young people;

f) because of the lack of recent progress reports setting out current iterations for disorder descriptions and criteria, it cannot be determined what modifications and adaptations have been made by the PCCG to the Fink et al (2010) BDS disorder description/criteria for specific ICD-11 field test use. Likewise, the only information to which we have access for the criteria that are being field tested for BDD is what little information appears in the Beta draft.

Fink et al’s BDS construct is considered by its authors to have the ability to capture the somatoform disorders, neurasthenia, noncardiac chest pain and other pain syndromes, “functional symptoms”, and the so-called “FSSs”, including CFS, ME, Fibromyalgia and IBS [8][13].

[Under the Fink et al disorder construct, the various so-called specialty “functional somatic syndromes” are considered to be manifestations of a similar, underlying disorder.]

In Lam et al (2012) the PCCG list a number of diseases and conditions for consideration under Differential diagnosis, vis: “Consider physical disease with multiple symptoms, e.g. multiple sclerosis, hyperparathyroidism, acute intermittent porphyria, myasthenia gravis, AIDS, systemic lupus erythematosus, Lyme disease, connective tissues disease.”

Notably, Chronic fatigue syndrome, ME, IBS and Fibromyalgia are omitted from the Differential diagnosis list. The authors are silent about whether their adapted BDS is intended to capture these discretely coded for ICD-10 diagnoses and if not, how these disorder groups could be reliably excluded [11].

ICD Revision has said that it does not intend to classify CFS, ME and Fibromyalgia under Mental and behavioural disorders. However, it has not clarified what measures would be taken to safeguard these patient groups if BSS were to be approved by the RSG for use in the ICD-11-PHC version.

There have been considerable concerns, globally, amongst patients, patient advocacy groups and the clinicians who advise them for the introduction in Denmark of the BDS disorder construct: these concerns apply equally to “BSS”.

It should also be noted that since early 2013, the ICD-10 G93.3 legacy entities, Postviral fatigue syndrome; Benign myalgic encephalomyelitis; Chronic fatigue syndrome, have been absent from the public version of the Beta draft. For over two years, now, and despite numerous requests (including requests by UK health directorates, parliamentarians and registered advocacy organizations) proposals for the chapter location and parent classes for these three terms (and their proposed Definitions and other Content Model parameters) have not been released.

Again, I request that these terms are restored to the Beta draft, with a “Change History”, in order that professional and lay stakeholders are able to monitor and participate fully in the revision process, a process from which they are currently disenfranchised.

If any clinicians attempting to follow the revision of the Somatoform disorders share concerns for any of the issues raised in these comments and wish to discuss further, they are most welcome to contact me via “Dx Revision Watch.”


References

1 Frances A. The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill. BMJ. 2013 Mar 18;346:f1580.

2 Allen Frances, Suzy Chapman. DSM-5 somatic symptom disorder mislabels medical illness as mental disorder. Aust N Z J Psychiatry. 2013 May;47(5):483-4.

3 Frances A. DSM-5 Somatic Symptom Disorder. J Nerv Ment Dis. 2013 Jun;201(6):530-1.

4 Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry 2012;24:556-67.

5 Fink P, Toft T, Hansen MS, Ornbol E, Olesen F. Symptoms and syndromes of bodily distress: an exploratory study of 978 internal medical, neurological, and primary care patients. Psychosom Med. 2007 Jan;69(1):30-9.

6 Creed F, Guthrie E, Fink P et al, Is there a better term than ‘medically unexplained symptoms’?. J Psychosom Res. 2010;68:5-8

7 Rief W, Isaac M. The future of somatoform disorders: somatic symptom disorder, bodily distress disorder or functional syndromes? Curr Opin Psychiatry 2014 Sep;27(5):315-9.

8 Fink P, Schroder A. One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders. J Psychosom Res. 2010 May;68(5):415-26.

9 Medically Unexplained Symptoms, Somatisation and Bodily Distress: Developing Better Clinical Services, Francis Creed, Peter Henningsen, Per Fink (Eds), Cambridge University Press, 2011.

10 In Press: Anna Budtz-Lilly, Per Fink, Eva Ornbol, Mogens Vestergaard, Grete Moth, Kaj Sparle Christensen, Marianne Rosendal. A new questionnaire to identify bodily distress in primary care: The ‘BDS checklist’. J Psychosom Res. [Published J Psychosom Res. June 2015 Volume 78, Issue 6, Pages 536–545]

11 Lam TP, Goldberg DP, Dowell AC, Fortes S, Mbatia JK, Minhas FA, Klinkman MS: Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. Family Practice (2013) 30 (1): 76-87.

12 Ivbijaro G, Goldberg D. Bodily distress syndrome (BDS): the evolution from medically unexplained symptoms (MUS). Ment Health Fam Med. 2013 Jun;10(2):63-4.

13 Fink et al: Proposed new classification: https://dxrevisionwatch.files.wordpress.com/2013/01/finkproposednewclass1.png


 

Caveats: The ICD-11 Beta drafting platform is not a static document: it is a work in progress, subject to daily edits and revisions, to field test evaluation and to approval by ICD Revision Steering Group and WHO classification experts. Not all new proposals may survive ICD-11 field testing. Chapter numbering, codes and Sorting codes currently assigned to ICD categories may change as chapters and parent/child hierarchies are reorganized. The public version of the Beta draft is incomplete; not all “Content Model” parameters display or are populated; the draft may contain errors and category omissions.

Abstract: WPA Congress 2014: ICD-11 Symposia: Proposals and evidence for the ICD-11 classification of bodily distress disorders

Post #320 Shortlink: http://wp.me/pKrrB-43v

Edited version of the text published on 13.01.15.

Screenshot: ICD-11 Beta drafting platform, public version, 13.01.15; Chapter 07 Mental and behavioural disorders: Bodily distress disorder. Joint Linerarization for Mortality and Morbidity Statistics (JLMMS) view selected.

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BDD130115

“Show availability in main linearizations” view selected. Hover text for categories designated with three coloured key reads: “In Mortality and Morbidity, Primary Care High Resource, Primary Care Low Resource.” Hover text for categories designated with single blue key reads: “In Mortality and Morbidity.”

Two working groups, two sets of recommendations

The Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG) is one of two working groups advising the Mental Health Topic Advisory Group (TAG) on the potential revision of the ICD-10 Somatoform disorders categories for ICD-11.

The other group tasked with making recommendations on the revision of the Somatoform disorders is the Primary Care Consultation Group (PCCG), led by Prof Sir David Goldberg [1].

The S3DWG’s disorder construct is the construct that has been entered into the ICD-11 Beta drafting platform since 2012 [2].

Perversely, the S3DWG is proposing to call its disorder construct, “Bodily distress disorder” (BDD) – a term already being used outside ICD Revision, interchangeably, with Bodily Distress Syndrome (BDS), which is conceptually different.

To further muddy the waters, the PCCG has proposed calling its construct (which in 2012 had drawn heavily on the Fink et al BDS concept but with some DSM-5 SSD-like psychobehavioural features tacked on), “Bodily stress syndrome” (BSS).

So four very similar terms in play:

Bodily distress disorder (S3DWG, the construct entered into the Beta draft)

Body distress disorders (PCCG primary care disorder group heading*)

Bodily stress syndrome (PCCG disorder category sitting under Body distress disorders*)

Bodily Distress Syndrome (Fink et al, 2010)

*As proposals of the Primary Care Consultation Group had stood in mid 2012 [1].

The co-chair of the Mental Health TAG agrees that the S3DWG’s BDD and Fink et al’s (2010) BDS construct [3] are conceptually different; that there is potential for confusion between the two constructs and he will be discussing the issue of BDD terminology with the working group.

I shall be reporting on some recently proposed revisions to the definition text for BDD and its three Severities in my next post.

ICD-11 Symposia, XVI World Congress of Psychiatry, Madrid 2014

The have been no progress reports from either the S3DWG or the PCCG since emerging proposals for both working groups were published in 2012.

In September, Professor Oye Gureje, who chairs the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders, presented on “Proposals and evidence for the ICD-11 classification of Bodily Distress Disorders” as part of series of symposia on the development of the ICD-11 chapter for mental and behavioural disorders, at the World Psychiatric Association XVI World Congress, in Madrid.

In the absence of progress reports, I have requested that WHO/WPA make a transcript, slides or summary of this presentation publicly available.

In the meantime, the Abstracts for these ICD-11 symposia presentations can be found here:

http://www.tilesa.es/wpamadrid2014/abstracts/volume8/files/assets/basic-html/page352.html

also: http://www.tilesa.es/wpamadrid2014/abstracts/volume8/index.html#/352/zoomed

XVI World Congress of Psychiatry. Madrid 2014
Volume 2. Abstracts Regular Symposia

[…]

http://www.tilesa.es/wpamadrid2014/abstracts/volume8/files/assets/basic-html/page354.html

Session: Regular Symposium SPEAKER 3 Code SY469

Title: Proposals and evidence for the ICD-11 classification of bodily distress disorders

Speaker O. Gureje University of Ibadan, Ibadan, Nigeria Abstract Objectives:

The disorder categories currently classified in the group of Somatoform Disorders in ICD-10 have been the subject of controversy relating to their names, utility, reliability and acceptability.

The ongoing development of ICD-11 presents an opportunity to revise these categories so as to enhance their utility and overall acceptability.

Methods: The WHO ICD-11 Working Group on Somatic Distress and Dissociative Disorders has conducted a comprehensive review of the current status of Somatoform Disorders, drawing on literature from across the world and considered within diverse clinical experiences of experts who were consulted for the revision exercise. Proposals for DSM-5 and their suitability for global application were also considered.

Results: Important areas for improving the utility and reliability of disorders grouped under Somatoform Disorders were identified. These areas encompass name, content, structure and clarity of the phenomenology. A simplified category of Bodily Distress Disorder with an improved set of guidelines for making the diagnosis has been proposed to replace current Somatoform Disorders categories.

Bodily Distress Disorder may be described as Mild, Moderate, or Severe based on the extent of focus on bodily symptoms and their interference with personal functioning. Bodily Distress Disorder is currently a subject of tests of its utility and reliability in internet- and clinic-based studies via the extensive network that WHO has developed.

Conclusions: Bodily Distress Disorder holds the promise of addressing the various concerns that have been expressed in regard to the utility and applicability of categories currently classified under Somatoform Disorders. The overarching goal of the new category is to enhance the clinical care of patients presenting with these common and disabling conditions. Bodily Distress Disorder is currently a subject of tests of its utility and reliability in internet- and clinic-based studies, including in primary care settings, via the extensive network that WHO has developed.

References Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. International Review of Psychiatry 2012; 24:556-567

Further reading:

1 Lam TP, Goldberg DP, Dowell AC, Fortes S, Mbatia JK, Minhas FA, Klinkman MS: Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. Family Practice (2013) 30 (1): 76-87. Full free text: http://fampra.oxfordjournals.org/content/30/1/76.long

2 Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry 2012;24:556-67. [Abstract: PMID: 23244611]

3 Fink P, Schröder A. One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders. J Psychosom Res. 2010 May; 68(5):415-26.  [Abstract: PMID: 20403500].

Caveats: The ICD-11 Beta drafting platform is not a static document: it is a work in progress, subject to daily edits and revisions, to field test evaluation and to approval by ICD Revision Steering Group and WHO classification experts. Not all new proposals may survive ICD-11 field testing. Chapter numbering, codes and sorting codes currently assigned to ICD categories may change as chapters and parent/child hierarchies are reorganized. The public version of the Beta draft is incomplete; not all “Content Model” parameters display or are populated; the draft may contain errors and category omissions.

Summary of responses from WHO re: Bodily distress disorder, Bodily stress syndrome, Bodily Distress Syndrome

Post #313 Shortlink: http://wp.me/pKrrB-3YR

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Screenshot: ICD-11 Beta drafting platform, public version, July 31, 2014; Chapter 06 Mental and behavioural disorders: Bodily distress disorder.

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BDD310714

Joint Linerarization for Mortality and Morbidity Statistics view selected; “show availability in main linearizations” view selected. Categories designated with three coloured key hover text: “In Mortality and Morbidity, Primary Care High Resource, Primary Care Low Resource. Categories designated with single blue key hover text: “In Mortality and Morbidity.”

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Summary of responses from Dr Geoffrey Reed, WHO

On July 23, I submitted an analysis and four questions via the ICD-11 Beta drafting platform for the attention of the Managing Editors for Topic Advisory Group (TAG) Mental Health, the advisory group that is revising ICD-10’s Chapter V.

A copy has been posted in Dx Revision Watch Post #311: Questions raised on ICD-11 Beta draft re: Bodily distress disorder http://wp.me/pKrrB-3Yh

Comments and suggestions submitted by registered users of the ICD-11 Beta drafting platform are screened and forwarded to the appropriate TAG Managing Editors for review.

I also sent a copy of my comments to Dr Geoffrey Reed. Dr Reed is Senior Project Officer overseeing the revision of the ICD Mental and behavioural disorders chapter.

On July 24, I received a response from Dr Reed, via email.

Dr Reed’s responses do not address all the points I had raised via the Beta platform and in my covering email. I am providing a summary of selected of Dr Reed’s responses, below.

I had also drawn Dr Reed’s attention to the absence, since early 2013, of the three G93.3 terms from the public version of the Beta draft and collective concerns for ICD Revision’s failure, to date, to respond to multiple requests to provide an explanation for the continued absence of these terms from the Beta draft and to clarify ICD Revision’s intentions and proposals for the classification of these three ICD-10 terms within ICD-11 [i.e. chapter location(s), parent code(s), hierarchies, Definitions, Synonyms, Inclusion terms etc.].

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Dr Reed provided the following information on July 24:

The placement of ME and related conditions within the broader ICD-11 classification is still unresolved.

There has been no proposal and no intention to include ME or other conditions such as fibromyalgia or chronic fatigue syndrome in the classification of mental disorders.

That ME and related conditions be clearly identified as NOT being part of this section of the classification could be made absolutely clear through the use of exclusion terms.

However, Dr Reed will be unable to request that exclusion terms be added to relevant Mental and behavioural disorders categories (e.g., Bodily Distress Disorder) until the conditions that are being excluded exist in the classification. At such time, he would be happy to request exclusion terms.

ICD Revision is currently involved in testing the proposals of the ICD-11 Primary Care Consultation Group* in primary care settings around the world, in part to compare how they work with the proposals of the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders**.

Whether the primary care proposal ends up capturing specific groups of patients in primary care who are likely to have underlying medical conditions will certainly be one of the issues for examination and further discussion. Study data would be used as a basis for modifying proposals.

That he considers my analysis is accurate.

That it is not WHO policy to make research protocols for field trial studies that are planned or currently being implemented publicly available for comment.

Details of the study methodology at the time the data are published are expected to be provided, in order that others may examine and critique the methodology, their interpretation of results and their subsequent decisions based on the studies.

Further modifications of the proposals will be based on data evaluation, and justifications made available.

In due course, ICD Revision will make more detailed diagnostic guidelines for all Mental and behavioural disorders available for review and comment before they are finalized, but ICD Revision is not yet ready to do that.

Dr Reed will notify me when that occurs, but anticipates this will be before the end of the year and considers there is plenty of time for review as the approval of ICD-11 is now currently planned for May, 2017.

Dr Reed’s purview does not extend to the section on classification of Diseases of the nervous system or other areas outside the Mental and behavioural disorders chapter, and is therefore unable to provide any information related to how these conditions will be classified in other chapters***.

He is unable to comment about the management of correspondence by other TAG groups**** and signposts to another member of WHO staff [a senior classification expert who had been copied into the joint organizations’ letter to WHO/ICD Revision, in March].

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Footnotes:

* Back in 2012, the ICD-11 Primary Care Consultation Group (the PCCG) were proposing a disorder construct that presented a modified version of the Fink et al (2010) Bodily Distress Syndrome (BDS) construct which, at that point, the Primary Care group were proposing to call, “Bodily stress syndrome (BSS).”

The PCCG hasn’t published a progress report since 2012 and the group’s current proposals are not available for scrutiny. If a modified version of BDS is currently being proposed by the PCCG, it isn’t known what changes have been made to the group’s proposals since the Lam et al paper was published in 2012, a paper which is now in the public domain [1].

An editorial co-authored by Prof David Goldberg, in June 2013, implied that Prof Goldberg, at least, was advancing that BDS should be progressed to ICD-11 field testing. It is unclear from Dr Reed’s responses to what extent the PCCG’s most recent proposals correspond to the disorder descriptions and criteria for Fink et al’s, already operationalized, BDS, or whether the group has retained the “BSS” disorder name for the purposes of the field tests and a modified construct/criteria set.

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** In 2012, the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders (the S3DWG) were proposing an alternative and divergent disorder construct that had good concordance with DSM-5’s Somatic symptom disorder, and poor concordance with Fink et al’s BDS [2].

Perversely, the S3DWG were proposing to call their disorder construct, “Bodily distress disorder (BDD)” – a term already used outside ICD Revision, interchangeably, with Bodily Distress Syndrome [3].

It is the S3DWG’s BDD disorder construct that has been entered into the ICD-11 Beta drafting platform.

The Beta draft entry for BDD has recently had characterizations inserted for three BDD severity specifiers: BDD, Mild; BDD, Moderate; BDD, Severe. This post (which was written before I received responses from Dr Reed) sets out these recent additions to the draft in the context of the two divergent sets of proposals: Definitions for three severities of Bodily distress disorder now inserted in ICD-11 Beta draft, July 19, 2014 http://wp.me/pKrrB-3X9

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*** This February 8, 2014 post: http://wp.me/pKrrB-3IX tracks the history of the progression of the three ICD-10 G93.3 categories, PVFS, (B)ME and CFS within the ICD-11 drafting platform, from May 2010 to early 2013.

Under the subheading “So why have these three ICD-10 terms disappeared and why is ICD Revision reluctant to respond?” I have suggested a number of potential reasons for the current absence of these three terms from the Beta draft.

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**** On March 17, a joint letter signed by Sonya Chowdhury, CEO, Action for M.E., Annette Brooke MP, Chair, All Party Parliamentary Group on M.E., The Countess of Mar, Chair, Forward M.E. and Dr Charles Shepherd, ME Association, was sent to key Topic Advisory Group for Neurology members and copied to WHO’s Dr Margaret Chan, Dr Geoffrey Reed and Dr Robert Jakob.

The letter had requested, inter alia, clarification for the absence of the three ICD-10 G93.3 terms, Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic fatigue syndrome from the public version of the ICD-11 Beta drafting platform.

Prior to early 2013, in the public version of the Beta draft, Chronic Fatigue Syndrome had been listed in the Beta Foundation Component as an ICD Title entity under the Diseases of the nervous system chapter, with Benign Myalgic encephalomyelitis specified as an Inclusion term to Title term CFS, and Postviral fatigue syndrome listed under Synonyms to Title term, CFS.

The joint letter can be read here:

http://www.actionforme.org.uk/Resources/Action%20for%20ME/Documents/get-informed/who-icd-11-letter-17-3-14-sc.pdf

At the July 1 meeting of the APPG on M.E. it was agreed that in the absence of a response, Annette Brooke MP (Chair) would follow up the correspondence. Minuted here (under 3 Matters arising; d) ICD-11):

http://www.meassociation.org.uk/2014/07/minutes-of-the-appg-on-me-meeting-and-the-agm-held-on-1-july-2014/

I have advised Sonya Chowdhury, Dr Charles Shepherd, Neil Riley and Jane Colby of Dr Reed’s responses and suggested that Annette Brooke MP is updated.

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Forthcoming Symposium:

In September, Professor Oye Gureje, who chairs the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders, will be presenting on “Proposals and evidence for the ICD-11 classification of Bodily Distress Disorders” as part of series of symposia on the development of the ICD-11 chapter for mental and behavioural disorders, at the World Psychiatric Association XVI World Congress, in Madrid, Spain, 14–18 September 2014.

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References:

1. Lam TP, Goldberg DP, Dowell AC, Fortes S, Mbatia JK, Minhas FA, Klinkman MS: Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. Family Practice (2013) 30 (1): 76-87. Full free text: http://fampra.oxfordjournals.org/content/30/1/76.long

2. Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry. 2012 Dec;24(6):556-67. http://www.ncbi.nlm.nih.gov/pubmed/23244611 [Full text behind paywall]

3. Fink P, Toft T, Hansen MS, Ornbol E, Olesen F. Symptoms and syndromes of bodily distress: an exploratory study of 978 internal medical, neurological, and primary care patients. Psychosom Med. 2007 Jan;69(1):30-9.

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Caveats: The ICD-11 Beta drafting platform is not a static document: it is a work in progress, subject to daily edits and revisions, to field test evaluation and to approval by ICD Revision Steering Group and WHO classification experts. Not all new proposals may survive ICD-11 field testing. Chapter numbering, codes and Sorting codes currently assigned to ICD categories may change as chapters and parent/child hierarchies are reorganized. The public version of the Beta draft is incomplete; not all “Content Model” parameters display or are populated; the draft may contain errors and category omissions.

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