April 4, 2017 Frozen Release of ICD-11 Beta draft for centres undertaking field testing

Post #331 Shortlink:  http://wp.me/pKrrB-4fc

As scheduled, ICD Revision posted a Frozen Release of the ICD-11 Beta draft today, April 4, 2017.

This is a stable version of the draft for use by the centres that are signed up for field testing the Beta draft for utility.

This PDF document sets out information of the field trial process:

ICD-11 Field Trials, Information and Terms of Engagement, 17 March 2017

The Frozen Release can be accessed here (Registration required for access):

http://apps.who.int/classifications/icd11/browse/frozenreleases

http://apps.who.int/classifications/icd11/frozen-2017-04-02/l-m/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f569175314

 

Here are screenshots from the April 4, 2017 Frozen Release for the ICD-10 G93.3 legacy terms, “postviral fatigue syndrome,” “benign myalgic encephalomyelitis,” and “chronic fatigue syndrome.”

There is no change to these terms in the Frozen Release compared with how they had stood on March 26, when the three terms were finally restored to the Beta draft.

Frozen Release: April 4, 2017: Postviral fatigue syndrome

Fatigue, below, displaying exclusions for BME and CFS. Two of the longstanding proposals that I had submitted on December 30, 2014, were approved and marked as “Implemented” on March 26, when the G93.3 legacy terms were finally returned to the draft 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.” Team WHO 2017-Mar-26 – 12:46 UTC

NB: My proposal of December 30, 2014 for an exclusion for the concept title “Postviral fatigue syndrome” was not approved and implemented on March 26, when PVFS’s two inclusion terms were approved. I have queried the rationale for this apparent anomaly with “Team WHO” but have yet to receive any response.

Frozen Release: April 4, 2017: Fatigue

For a good overview of ICD-11’s structure and functionality by NHS Digital click here

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A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two

Post #330 Shortlink: http://wp.me/pKrrB-4eH or http://bit.ly/ICD11proposal
For background to Part Two see: A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part One

Update: A PDF Q & A for our proposals can be downloaded here

 

Time sensitive

In the World Health Organization’s ICD-10, the terms, “postviral fatigue syndrome,” “benign myalgic encephalomyelitis,” and “chronic fatigue syndrome,” are all classified to G93.3, in the neurological chapter, as below:

Image source: ICD-10 Version: 2016

The next edition of ICD (ICD-11) is scheduled for release at some point in 2018, following presentation at the World Health Assembly (WHA), in May 2018.

The WHO work group with responsibility for the G93.3 legacy categories removed the terms from the publicly accessible version of the ICD-11 Beta draft, in early 2013, while they deliberated over how these categories should be represented in ICD-11.

On March 26, after a four year absence from the draft, “Team WHO” finally restored the G93.3 terms to the Beta platform.

Two long standing proposals for inserting exclusions under Fatigue for Benign myalgic encephalomyelitis and Chronic fatigue syndrome were also approved on March 26.

The three G93.3 legacy terms were returned to their 2009 Beta location 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.”

This suggests that we should view this as a “placeholder” and that the Topic Advisory Group for Neurology may release revised proposals later this year.

WHO has confirmed there is no intention to classify the terms under the Mental or behavioural disorders chapter or under the Symptoms, signs chapter.

 

How does the draft currently stand?

All three terms are currently back under the Neurology chapter, under parent: Other disorders of the nervous system, with PVFS as the lead (or concept title) term. BME and CFS are specified as inclusion terms (so they are coded to the same code as PVFS). All other content on the listing is much as it had stood in the Beta, in 2009.

(This is almost the same hierarchy as in ICD-10, except CFS is now included in the ICD-11 equivalent of the Tabular List, whereas in ICD-10, CFS is included only in the Index. Canada, Germany and the U.S. already have all three terms in their Tabular Lists.)

This is how the terms currently appear in the Beta draft:

In view of the caveat, it remains unclear what Topic Advisory Group for Neurology might still be considering for these terms, when they will reach consensus, or whether alternative proposals might be released at some point.

There was a proposals deadline on Thursday, March 30. Proposals received after this date may have to wait until after the ICD-11 is tested and released to be considered for inclusion in the first annual update of ICD-11, in 2019.

 

A proposal for ICD-11

To ensure that these terms are present and appropriately classified in ICD-11, U.S. advocate Mary Dimmock and I have collaborated on the preparation of a proposal for the restructure of the ICD-10 G93.3 category terms: Postviral fatigue syndrome; Benign myalgic encephalomyelitis; and Chronic fatigue syndrome.

We submitted a formal and fully referenced proposal on March 27.

Our proposal recommends:

  • that the terms should be retained in the neurological chapter (Chapter 08: Diseases of the nervous system);
  • that the terms should be retained under the parent class: Other disorders of the nervous system;
  • that ME and CFS should each be assigned separate codes;
  • that PVFS is not an appropriate title term for ME to sit under (not all cases of ME are preceded by a virus).

We’ve also recommended:

  • reciprocal exclusions for “Bodily distress disorder” and for general Fatigue;
  • that the designation “Benign” should be dropped for ICD-11.

Our proposed restructure for ICD-11 looks like this:

Viewing our proposal

In order to view our Proposal in the Beta “Proposal Mechanism” you will first need to register with the Beta platform (this only takes a minute or two and you can register, if you wish, using an existing social media, Yahoo, Google or MS account).

Register for access here: http://bit.ly/ICD11Registrationpage

There is a WHO tutorial video on how to register, here: http://bit.ly/ICD11regtutorial

Once you are registered and logged in, go straight to this page to view and comment on our Proposal: http://bit.ly/commentICD11

For ease of access, we’ve put a copy of our Proposal and Rationale into a PDF, which you can download here:

Suzy Chapman, Mary Dimmock Proposal for ICD-11

We’re inviting patient and advocacy organizations and other stakeholders to review and comment on our Proposal.

Comments will only be accepted via the Beta “Proposal Mechanism” – so don’t send comments directly to ICD Revision.

If you are commenting on behalf of an organization, please state the organization’s name and in what capacity.

The Comment box for our proposal is located right at the bottom of the web page:

Click here for larger version

You won’t be able to edit or delete your comment once it’s been submitted ‒ so you may want to prepare a draft, first. You can include references to papers, reports etc in support of your comments but you won’t be able to upload files ‒ and it’s a plain text field only.

At the moment, it’s not clear what date comments on proposals will need to be received by in order to be taken into consideration for the version of ICD-11 that is scheduled for release in 2018. But we are recommending that comments are submitted within the next couple of weeks.

As well as commenting on our proposal, now that ICD Revision has restored the three terms to the draft, you may also comment on how the draft currently stands, here: http://bit.ly/2o8lhMA

Click here for larger version

If you have an queries please contact Suzy Chapman via the Contact Form.

Here’s the PDF again Suzy Chapman, Mary Dimmock Proposal for ICD-11

And here’s the URL again for our proposal on the Beta draft Proposal Mechanism

For a good overview of ICD-11’s structure and functionality by NHS Digital click here

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A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part One

Post #329 Shortlink: http://wp.me/pKrrB-4dV

Our Proposal and Rationale is set out in Part Two:

A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two

A version of ICD-11 in 2018

It’s been a long time coming and it ain’t finished yet…

The World Health Organization (WHO) has been revising ICD-10 since 2007.

After several shifts in the timeline, WHO plans to present a version of the next edition (ICD-11 MMS) at the World Health Assembly (WHA), in May 2018.

WHO won’t be seeking endorsement of the ICD-11 product in May 2018 because it won’t be ready to implement. Endorsement will be sought at some point in the future. In the meantime, a version of ICD-11 is scheduled for release later in 2018, after the May assembly. The release date has yet to be announced.

https://hscic.kahootz.com/connect.ti/t_c_home/view?objectId=297939

“…The World Health Organization (WHO) is currently developing the 11th revision of ICD. Once endorsed by the World Health Assembly (WHA), WHO Nomenclature regulations stipulate that Member States must use the most current revision for mortality and morbidity purposes. For this reason and to allow member countries to adopt the new revision when they are ready, WHO will brief the WHA on ICD-11 in May 2018 but will not seek endorsement at this time.”

Member states will transition from ICD-10 to the new edition at their own pace. It’s going to be several years before countries have evaluated the ICD-11 product for utility and prepared their health systems to make the transition.

At some point, data using codes from the new edition will be accepted alongside data compiled using ICD-10. WHO will continue to support ICD-10 until the majority of member states have adopted and implemented the new edition.

It will take even longer for countries like the U.S. and Canada, who use a country specific adaptation of ICD, to implement as they will need to modify the new edition to suit their countries’ health systems. The earliest Canada can implement is currently projected as 2023 [1]. The U.S.’s CDC estimate it will take at least 6 years after the codes have been ratified to prepare, field test and implement an ICD-11-CM/PCS.

 

Proposal deadlines

Some important deadlines for proposals for the ICD-11 Beta draft:

The deadline in order for proposals to be considered for a frozen version in March/April 2017 was 30 December 2016.

In order for proposals to be considered for inclusion in the version of ICD-11 that is scheduled for release in 2018, they needed to be submitted by March 30, 2017. So those two deadlines have been reached.

Comments by member states and improvements arising as a part of the Quality Assurance mechanism will be included with deadlines later in 2017.

According to Slide #12 in this November 2016 WHO presentation, the deadline for member state comments is May 31, 2017; the deadline for Field Testing and Quality Assurance is June 30, 2017 [2]. But these dates are unconfirmed and may have been revised since November, last year.

Proposals received after the end of May will be considered in the context of ICD-11 maintenance after 2018, when the new version will be subject to an annual update and maintenance schedule [3]. The first annual update is anticipated in 2019.

The Joint Task Force is considering naming each year’s iteration in the format: ICD 2018; ICD 2019; ICD 2020 and so on. There may never be a need for an ICD-12, since an electronic system is better able to evolve “gracefully” – as Dr Christopher Chute (Joint Task Force; Chair, Revision Steering Group) puts it – in response to advances in scientific knowledge and classificatory changes.

 

Deadlines for submitting comments

I have asked Dr Jakob and the Joint Task Force to clarify by what date comments on proposals that met the March 30 deadline will need to be submitted by in order to be considered in the context of the earliest release of ICD-11, in 2018.

No clarification has been forthcoming; so if you are a stakeholder considering submitting a comment on existing proposals in the Beta draft or on outstanding proposals queued in the “Proposals Mechanism” which are still going through the review process, then I would advise that you put this in hand over the next couple of weeks. If any deadline is announced, I will update at the top of this report.

 

Frozen release

On April 4, ICD Revision is scheduled to release a frozen version of ICD-11 MMS for field testing*. If there are any changes in this April 2017 Frozen Release that are relevant to stakeholders in the G93.3 terms, I will post an update at the top of this report.

*ICD-11 Field Trials, Information and Terms of Engagement, March 17, 2017 https://hscic.kahootz.com/gf2.ti/af/762498/122441/PDF/-/ICD11_FT_Information_and_ToE.pdf

 

Current status of the ICD-10 G93.3 legacy categories

The ICD-10 G93.3 legacy categories: Postviral fatigue syndrome; Benign myalgic encephalomyelitis and Chronic fatigue syndrome were taken out of the public version of the Beta draft in early 2013, with no explanation for their absence.

ICD Revision has maintained a cephalopodic grip on its intentions for these terms.

Advocates and patient organization stakeholders have been attempting to obtain transparency from ICD Revision around the Topic Advisory Group for Neurology’s proposals for these terms for over four years. During this period, stakeholders have been disenfranchised from participation in the revision process.

 

Questions raised in the English Parliament

15 international stakeholder organizations wrote to the ICD-11 MMS Joint Task Force, in February, in support of my call that the Joint Task Force place the matter of the continued absence of proposals for these terms on the Agenda of their February 20–22 meeting, in Cologne.

There were asked to expedite the release of proposals for public scrutiny and comment before the March 30 deadline.

This initiative was met with a disturbing level of obfuscation on the part of WHO and the Joint Task Force, especially given that ICD Revision has been promoted as an open, transparent process, inclusive of stakeholder participation.

The Countess of Mar, a long standing advocate for patients with ME and CFS, tabled two Written Questions in the House of Lords. The first is here (February 27), which received a response that raised more questions than it answered and a follow up question, here (March 16), which received an equally opaque reply.

But on March 26, the three terms were finally restored to the Beta draft – 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.”

Team WHO 2017-Mar-26 – 12:46 UTC

This suggests that we should view the restoration of the terms as a “placeholder” and that the work group may release revised proposals later this year.

 

What do we know?

WHO has confirmed that there is no intention to classify the ICD-10 G93.3 legacy terms under the Mental or behavioural disorders chapter or under the Symptoms, signs chapter.

“Team WHO” has also approved some long standing proposals for exclusions for two of these terms under Fatigue (but not yet approved an exclusion for Postviral fatigue syndrome and I have asked “Team WHO” for the rationale for this apparent anomaly, since one would anticipate that if the inclusion terms are excluded under Fatigue, the ICD concept title entity would also be excluded). Possibly, TAG Neurology has other plans for the classification of PVFS in ICD-11.

So, nearly 10 years into the revision process, it’s still unclear what the work group might be considering for these terms, when they will reach consensus, or whether alternative proposals might be released on April 4, when a frozen version of ICD-11 is scheduled for release for field testing.

 

How do the terms currently stand in ICD-10?

This is how the G93.3 legacy terms were represented in ICD-10:

For ICD-10, Postviral fatigue syndrome (PVFS) is the lead (or concept title) term. Benign myalgic encephalomyelitis is the inclusion term under PVFS and takes the G93.3 code. Chronic fatigue syndrome is listed only in the Index, and coded to G93.3.

 

How do the terms stand in ICD-11 Beta draft, now they have been restored?

Since March 26, 2017, for ICD-11 Beta draft, all three terms are currently back under the Neurology chapter, under parent: Other disorders of the nervous system. PVFS is the lead (or concept title) term. BME and CFS are both specified as inclusion terms to PVFS, in the ICD-11 equivalent of the Tabular List. The terms listed under synonyms and all other “Content Model” descriptive content appear much as the Beta had stood in 2009.

But given the caveat, it is still unknown what the work group might be considering for these terms or whether or when they might release further proposals.

Note that the recommendations of the various external work groups are advisory only. WHO classification experts and the Joint Task Joint can, and sometimes do, overrule work group decisions.

If the Topic Advisory Group for Neurology, that has responsibility for these terms, were to reach consensus and release an alternative set of proposals before 2018, these will not necessarily obtain the approval of WHO/Joint Task Joint.

 

Suzy Chapman and Mary Dimmock have submitted a proposal

To address this situation, U.S. advocate, Mary Dimmock, and I have collaborated on the preparation of a formal and fully referenced proposal which we submitted on March 27. Our proposal (in the PDF below) recommends that these terms should be retained in the neurological chapter, using separate codes for ME and CFS, and also makes other recommendations.

PDF: Suzy Chapman, Mary Dimmock Proposal for ICD-11

 

Our Proposal and Rationale is set out in Part Two:

A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two

For a good overview of ICD-11’s structure and functionality by NHS Digital click here

References:

1 International Statistical Classification of Diseases and Related Health Problems, 11th Revision, Canada, Canadian Institute for Health Information (CIHI). https://www.cihi.ca/en/submit-data-and-view-standards/codes-and-classifications/icd-11

2 Presentation, Dr Robert Jakob, WHO/ICD Revision, November 2016. https://t.co/VvtZXVHZoF

3 ICD Revision Quarterly Newsletter, ICD-11 Update: January 2017. http://www.who.int/entity/classifications/ICD11January2017Newsletter.pdf

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ICD-11 Beta draft: Rationale for Proposal for Deletion of proposed new category: Bodily distress disorder

Post #328 Shortlink: http://wp.me/pKrrB-4dc

ICD-11 Beta draft Proposal Mechanism:

https://tinyurl.com/ICD11BDDsubmission

(Registration with the Beta draft required in order to view proposals)

  ICD-11 Bodily distress disorder submission

Proposal submitted by Suzy Chapman, Dx Revision Watch, via ICD-11 Beta draft Proposal Mechanism

Submitted: March 1, 2017

The author has no affiliations or conflicts of interest to declare.

Rationale for Proposal for Deletion of the Entity: Bodily distress disorder

1: The acronym “BDD” is already in use to indicate Body Dysmorphic Disorder [1].

2: With limited field studies, there is currently no substantial body of evidence for the validity, reliability, utility, prevalence, safety and acceptability of the S3DWG’s proposed disorder construct. However, the focus of this rationale is the proposed nomenclature.

The Somatic Distress and Dissociative Disorders Working Group (S3DWG) proposes to name its construct, “bodily distress disorder (BDD)” – a term that is already used by researchers and in the field interchangeably with the disorder term, “bodily distress syndrome (BDS).”

“Bodily distress syndrome” is a conceptually divergent disorder construct: differently defined and characterized, with different criteria that are already operationalized in Denmark and beyond, in research and clinical settings, and which potentially include a different patient set to that described in the S3DWG’s proposal [2].

As defined for the ICD-11 core version, the S3DWG’s “bodily distress disorder” construct has stronger conceptual and characterization alignment with DSM-5 “somatic symptom disorder (SSD)” than with Fink et al. (2010) “bodily distress syndrome” [3][4].

It is noted that “Somatic symptom disorder” is listed under Synonyms for the BDD entry in the ICD-11 Beta draft.

The defining feature of both the S3DWG’s “bodily distress disorder” and DSM-5 “somatic symptom disorder” is the removal of the distinction between “medically explained” and “medically unexplained” somatic complaints. Rather than define the disorder on the basis of the absence of a known medical cause, instead, specific psychological features are required in order to fulfill the criteria.

The S3DWG’s BDD is characterized by “the presence of bodily symptoms that are distressing to the individual and excessive attention directed toward the symptoms which may be manifest by repeated contact with health care providers.”

“Excessive attention is not alleviated by appropriate clinical examination and investigations and appropriate reassurance.”

“If a medical condition is causing or contributing to the symptoms, the degree of attention is clearly excessive in relation to its nature and progression.”

“Bodily symptoms and associated distress are persistent, being present on most days for at least several months and are associated with significant impairment in personal, family, social, educational, occupational or other important areas of functioning.”

The S3DWG’s “bodily distress disorder” may involve a single unspecified somatic symptom or multiple unspecified symptoms that may vary over time, in association with the disorder’s other defining features.

For DSM-5 “somatic symptom disorder,” the centrality of medically unexplained symptoms in order to meet the criteria is similarly de-emphasized and replaced by psychological responses to distressing, persistent symptoms: “excessive thoughts, behaviours and feelings” or “excessive preoccupation” with the bodily symptom or associated health concerns [5].

As with BDD, for SSD, the symptoms may or may not be associated with another medical condition. Some patients with general medical  diagnoses, such as cancer, cardiovascular disease or diabetes, or patients diagnosed with the so-called “functional somatic syndromes” may qualify for a diagnosis of SSD if they are perceived as experiencing disproportionate and excessive thoughts and feelings or using maladaptive coping strategies in response to their illness, despite the reassurance of their clinicians [6].

As with the S3DWG’s defining of BDD, for SSD, there is no requirement for a specific number of complaints from among specified symptom groups to meet the criteria: so no symptoms counts or symptom clusters from body systems required for either.

To meet the SSD criteria: at least one symptom of at least six months duration and at least one of three psychological criteria are required: disproportionate thoughts about the seriousness of the symptom(s); or a high level of health anxiety; or devoting excessive time and energy to symptoms or health concerns; and for the symptoms to be significantly distressing or disruptive to daily life.

Though they differ somewhat in the characterization of their severity specifiers, the S3DWG’s defining of BDD and DSM-5 SSD may be considered essentially similar in conceptualization: no distinction between “medically explained” and “medically unexplained”; a much simplified criteria set to those defining the somatoform disorders, based on “excessive” or “disproportionate” psychological responses to persistent distressing symptoms, and with significant impairment or disruption to functioning.

Whereas, for the Fink et al. (2010) “bodily distress syndrome (BDS),” psychological or behavioural characteristics are not part of the criteria: symptom patterns or clusters from organ/body systems (cardiopulmonary; gastrointestinal; musculoskeletal or general symptoms) are central [2]. The diagnosis is exclusively made on the basis of the somatic symptoms, their complexity and duration, with moderate  to severe impairment of daily life. There is a “Modest: single organ” type and a “Severe: multi-organ” type.

The Fink et al. (2010) BDS construct is considered by its authors to have the ability to capture the somatoform disorders, neurasthenia, “functional symptoms” and the so-called “functional somatic syndromes” under a single, unifying disorder construct which subsumes CFS, ME, fibromyalgia and IBS (which are discretely classified within other chapters of ICD-10), noncardiac chest pain, chronic pain disorder, MCS and some others [7][8][9].

(The various so-called specialty “functional somatic syndromes” are considered by the authors to be an artifact of medical specialization and manifestations of a similar, underlying disorder with a common, hypothesized aetiology.)

Contrast this with the S3DWG’s BDD construct, which makes no assumptions about aetiology and does not exclude symptoms associated with general medical conditions; whereas, for Fink et al. BDS, “If the symptoms are better explained by another disease, they cannot be labelled BDS.”

That DSM-5 SSD and Fink et al. (2010) BDS are differently conceptualized, with different criteria sets, potentially capturing different patient populations has been acknowledged by SSD work group chair, Joel E Dimsdale, and by Fink, Henningsen and Creed [10][11]. In the literature, however, one observes frequent instances where the term “bodily distress disorder” has been used when what is actually being discussed within the paper or editorial is the Fink et al. (2010) “bodily distress syndrome (BDS)” disorder construct.

For example, “bodily distress disorder” is used interchangeably with “bodily distress syndrome” in the editorial (Creed et al. 2010): Is there a better term than “medically unexplained symptoms”? [1].

In this (Rief and Isaac 2014) editorial: The future of somatoform disorders: somatic symptom disorder, bodily distress disorder or functional syndromes? the authors are using the term, “bodily distress disorder” while clearly discussing the Fink et al. (2010) BDS  construct [12].

The S3DWG’s proposed term is seen, here, as “Bodily distress disorder (Fink and Schroder 2010)” in Slide #3 of the symposium presentation: An introduction to “medically unexplained” persistent physical symptoms. (Professor Trudie Chalder, Department of Psychological Medicine, King’s Health Partners, 2014) [13].

This recent paper: Medium- and long-term prognostic validity of competing classification proposals for the former somatoform disorders (Schumacher et al. 2017) compares prognostic validity of DSM-5 “somatic symptom disorder (SSD)” with “bodily distress disorder (BDD)” and “polysymptomatic distress disorder (PSDD)” and discusses their potential as alternatives to SSD for the replacement of the somatoform disorders for the forthcoming ICD-11 [14].

The authors state, “the current draft of the WHO group is based on the BDD proposal.” But the authors  have confirmed that for their study, they had operationalized “Bodily distress disorder based on Fink et al. 2007” [15].

In the (Fink et al. 2007) paper: Symptoms and syndromes of bodily distress: an exploratory study of 978 internal medical, neurological, and primary care patients, the authors conclude: “We identified a general, distinct, bodily distress syndrome or disorder that seems to encompass the various functional syndromes advanced by different medical specialties as well as somatization disorder and related diagnoses of the psychiatric classification.”

There are other examples in the literature and in the field. But these suffice to demonstrate that the term, “bodily distress disorder” is already used synonymously with disorder term “bodily distress syndrome (BDS)” and that researchers/clinicians, including Fink et al., do not differentiate between the two.

If researchers/clinicians do not differentiate between “bodily distress syndrome” and “bodily distress disorder” (and in some cases, one observes the conflations, “bodily distress syndrome or disorder” and “bodily distress syndrome/disorder”), has the S3DWG considered the difficulties and implications for maintaining the discrete identity of its proposed disorder, once ICD-11 is in the hands of its end users – clinicians, allied health professionals and coders; or considered the implications for patients and the particular vulnerability of those diagnosed with one of the so-called, “functional somatic syndromes”; or the implications for data reporting and analysis?

The S3DWG presented its emerging proposals for subsuming most of the ICD-10 somatoform disorder categories between F45.0 – F45.9, and F48.0 Neurasthenia, under a new single category which it proposes to call “bodily distress disorder (BDD)” in 2012 [3] and again in 2016 [4].

Thus far, the S3DWG has published no rationale for its recommendation to repurpose a disorder term already strongly associated with the Fink et al. (2010) disorder construct.

Neither has the group discussed nor acknowledged within its papers the implications for confusion and conflation between its own SSD- like “BDD” construct and the Fink et al. “bodily distress syndrome (BDS).”

Nor has the group’s output discussed the potential difficulties and implications for maintaining construct integrity within and beyond  ICD-11.

There is no justification for introducing a new disorder category into ICD-11 that has greater conceptual alignment with the DSM-5 SSD construct but is proposed to be assigned a disorder name that is closely associated with a divergent (and operationalized)  construct/criteria set, that is already in use in research and clinical settings.

This is unsafe and unsound classificatory practice.

This proposed disorder name should be rejected by the Project Lead for the revision of the Mental or behavioural disorders chapter and by the Joint Task Force that is overseeing the finalization of ICD-11  MMS.

If the S3DWG is unprepared or unwilling to reconsider and recommend an alternative disorder name then I submit that the current proposal to replace the somatoform disorders with a single “bodily distress disorder” category should be abandoned.

ICD-11 should proceed with the ICD-10 status quo, or retire or deprecate the somatoform disorder categories for the next edition.

It is perhaps germane that in 2010, three years prior to the finalization of DSM-5, Creed et al. had advanced: “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. In our discussion, the terms which fit most closely the criteria we have set out above were the following: bodily distress (or stress) syndrome/ disorder, psychosomatic or psychophysical disorder, functional (somatic) syndrome or disorder.” [1]

The authors conclude that “bodily distress disorder” best fitted their “Criteria to judge the value of alternative terms for ‘medically unexplained symptoms.'”

It would appear that the term “bodily distress disorder” can mean anything anyone chooses it to mean – which might be admissible for Humpty Dumpty but unsound classificatory practice for ICD-11 [16].

References:

1 Creed F, Guthrie E, Fink P, Henningsen P, Rief W, Sharpe M, White P. Is there a better term than “medically unexplained symptoms”? J Psychosom Res. 2010 Jan;68(1):5-8. doi:10.1016/j.jpsychores.2009.09.004. [PMID: 20004295]

2 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]

3 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]

4 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]

5 American Psychiatric Association. (2013). Somatic Symptom and Related Disorders. In Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: Author.

6 Frances A, Chapman S. DSM-5 somatic symptom disorder mislabels medical illness as mental disorder. Aust N Z J Psychiatry. 2013 May;47(5):483-4. [PMID: 23653063]

7 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. Fam Pract. 2013 Feb;30(1):76-87. doi: 10.1093/fampra/cms037. Epub 2012 Jul 28. [PMID: 22843638]

8 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. [PMID: 24427171]

9 Goldberg DP, Reed GM, Robles R, Bobes J, Iglesias C, Fortes S, de Jesus Mari J, Lam TP, Minhas F, Razzaque B et al. Multiple somatic symptoms in primary care: A field study for ICD-11 PHC, WHO’s revised classification of mental disorders in primary care settings. J Psychosom Res. 2016 Dec;91:48-54. doi:10.1016/j.jpsychores.2016.10.002. Epub 2016 Oct 4. [PMID: 27894462]

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

11 Frances Creed and Per Fink. Presentations, Research Clinic for Functional Disorders Symposium, Aarhus University Hospital, May 15, 2014.

12 Rief W, Isaac M. The future of somatoform disorders: somatic symptom disorder, bodily distress disorder or functional syndromes? Curr Opin Psychiatry September 2014 – Volume 27 – Issue 5 – p315–319. [PMID: 25023885]

13 Chalder, T. An introduction to “medically unexplained” persistent physical symptoms. Presentation, Department of Psychological Medicine, King’s Health Partners, 2014. [Accessed 27 February 2017]

14 Schumacher S, Rief W, Klaus K, Brähler E, Mewes R. Medium- and long-term prognostic validity of competing classification proposals for the former somatoform disorders. Psychol Med. 2017 Feb 9:1-14. doi: 10.1017/S0033291717000149. [PMID: 28179046]

15 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. [PMID: 17244846]

16 Carroll L. Alice’s Adventures in Wonderland. 1885. Macmillan.

Changes to SNOMED CT and Read Codes (CTV3) for CFS, ME and PVFS

Post #327 Shortlink: http://wp.me/pKrrB-4aD

Recent changes to SNOMED CT for CFS, ME and PVFS

  • Correspondence between Forward-ME and UK Health and Social Care Information Centre
  • SNOMED CT retires Mental disorder parent for Chronic fatigue syndrome and ME
  • Projected changes to April 2016 release of Read Codes Clinical Terms Version 3 (CTV3)
  • Read Codes system to be phased out as part of wider SNOMED CT implementation

In addition to ICD-10, a number of terminology and electronic health and medical record systems are used in the UK in primary, secondary, and health and social care clinical settings, which include:

OPCS-4 (classification of Surgical Operations and Procedures)

SNOMED CT (Systematized Nomenclature of Medicine – Clinical Terms, a comprehensive, multilingual clinical terminology system)

Read Codes (a coded thesaurus of clinical terms for recording patient findings and procedures in health and social care IT systems across primary and secondary care, e.g. GP surgeries and reporting of pathology results).

The National Information Board (NIB) has specified that all primary care systems adopt SNOMED CT by the end of December 2016 and that SNOMED CT is to be used as the single terminology in all health care settings in England, with a projected adoption date for the entire health system of April 2020 [3].

You can access a public SNOMED CT browser here: IHTSDO browser

This is an online browser and does not require any software to be downloaded. You will need to accept the license and then select for the UK “Local Extension” of SNOMED CT. Click on the “Search” tab to enter clinical terms.

The SNOMED CT International Edition and “Local Extensions” for a number of other countries, including the US, are also available via the browser. All editions release new updates twice a year, on a staggered schedule. The Release schedule for the UK Extension is April and October.

Read Codes system to be retired

The Read Codes system of clinical terms has been used in the NHS since 1985. As part of the adoption of SNOMED CT in primary care, Clinical Terms Version 3 (CTV3) is being deprecated.

More information on the phasing out of Read Codes, here:

Retirement of Read Version 2 and Clinical Terms Version 3

Click link for PDF document Retirement Schedule

There was no new release for CTV3 issued in October, but the April 2016 release is scheduled for Friday, 18th March 2016. The last release of CTV3 will be published in April 2018.

How have CFS and related terms been listed within SNOMED CT and CTV3?

SNOMED CT

Prior to July 2015, all editions of SNOMED CT had the following listings for CFS, ME and PVFS:

Chronic fatigue syndrome (with ME – Myalgic encephalomyelitis and several other related and historical terms listed under Synonyms) was assigned two parent disorder classes: Mental disorder, and Multisystem disorder.

Postviral fatigue syndrome was listed under Children to Chronic fatigue syndrome.

Read Codes (CTV3)

The twice yearly Read Codes releases (April and October) are available only to license holders but the codes can be viewed through this public resource (caveat: it is unclear how often this NCBO BioPortal ontology resource is updated with new releases for individual ontology systems):

See: BioPortal Xa01F

For CTV3, Xa01F Chronic fatigue syndrome (with ME – Myalgic encephalomyelitis and PVFS – Postviral fatigue syndrome under Synonyms) is listed, hierarchically, under two parent disorder classes: as a Sub Class of both Neurasthenia, under parent: Mental health disorder, and as a Sub Class of Neurological disorder.

See: http://purl.bioontology.org/ontology/RCD/Xa01F

Mental health disorder > Neurotic disorder > Somatoform disorder > Neurasthenia > Chronic fatigue syndrome

and

Neurological disorder > Chronic fatigue syndrome

See also the Visualization tab for a diagrammatic representation of dual parentage:

http://bioportal.bioontology.org/ontologies/RCD?p=classes&conceptid=Xa01F#visualization

Correspondence between Countess of Mar and UK Health and Social Care Information Centre

Forward-ME is an informal group for ME charities and voluntary organizations, chaired by the Countess of Mar, who also serves as Co-chair to the All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME).

Between November 2014 and June 2015, Lady Mar was in correspondence with Mr Leon Liburd, Senior Support Analyst Systems and Service Delivery, and Ms Elaine Wooler, Advanced Clinical Terminology Specialist, UK Health and Social Care Information Centre.

Their correspondence (in reverse date order) was published on the Forward-ME website in June and can be read here Correspondence re SNOMED added June 2015

or open PDF here on Dx Revision Watch

Click link for PDF document  Correspondence re SNOMED

Changes to SNOMED CT

As a result of these exchanges, Lady Mar was advised that the relationship between the entry for 52702003 Chronic fatigue syndrome and the Mental disorder parent had been retired. In future editions, Chronic fatigue syndrome would be listed under the single parent, 281867008 Multisystem disorder.

See here

Additionally, 51771007 Postviral fatigue syndrome was being removed as a subtype of 52702003 Chronic fatigue syndrome (disorder) – though no rationale for this specific decision appears to be provided within the correspondence.

See here

[So 51771007 Postviral fatigue syndrome would be no longer be listed as a sub class under Children to 52702003 Chronic fatigue syndrome but directly under two parents: 281867008 Multisystem disorder and 123948009 Post-viral disorder.]

These changes were effected in the July 2015 release for the International Edition (Release 20150731).

They were subsequently incorporated into the September 2015 US Extension (Release 20150901), the October 2015 UK Extension (Release 20151001) and the November 2015 Swedish Extension (Release 20151130). It is expected that other country Extensions will also reflect these changes in their forthcoming releases.

Within the correspondence, on 11 November 2014, Mr Leon Liburd had also advised Lady Mar:

“It is also noted that the corresponding representation in the UK’s Clinical Terms Version 3 terminology product Xa01F | Chronic fatigue syndrome is classified as both a Neurological disorder and a Mental health disorder. As such, any conclusions emerging from the SNOMED CT discussions would also be reflected in the CTV3 UK product.”

Clarification re CFS and CTV3

In November, I contacted the UK Health and Social Care Information Centre for clarification of how CFS and its various Synonyms are currently listed within CTV3.

On 20 November, I was advised by Karim Nashar, Terminology Specialist, UK Terminology Centre, Health and Social Care Information Centre, that:

“[Xa01F | Chronic fatigue syndrome was being moved] under a single supertype 281867008 | Multisystem disorder (disorder) as to reflect the SNOMED correction in CTV3″

and that this change should be reflected in the April 2016 CTV3 release.

As noted above, Clinical Terms Version 3 (CTV3) is being deprecated and the last release of CTV3 will be published in April 2018.

The ICD-11 Beta draft and proposed classification of the G93.3 legacy terms

In June, WHO’s Dr Robert Jakob had told me that if TAG Neurology’s proposals and rationales for the G93.3 legacy terms were not ready for public release in September, he projected their release by December, latest (see towards end of Post #324).

No proposals were released in September and none in December. Eight years into the revision process and stakeholders still don’t know how ICD Revision proposes to classify the ICD-10 G93.3 legacy terms for ICD-11.

On 28 December, I called again, via the ICD-11 Beta Comments mechanism, for these terms to be restored to the public version of the Beta drafting platform.


 References

1 UK Terminology Centre (UKTC): http://systems.hscic.gov.uk/data/uktc/

2 SNOMED CT: http://systems.hscic.gov.uk/data/uktc/snomed

3 NIB document ‘Personalised Health and Care 2020: A Framework for Action’:
https://www.gov.uk/government/publications/personalised-health-and-care-2020

4 IHTSDO browser: http://browser.ihtsdotools.org

5 Retirement of Read Version 2 and Clinical Terms Version 3: http://systems.hscic.gov.uk/data/uktc/readcodes

6 NCBO BioPortal Read Codes (CTV3) Xa01F Chronic fatigue syndrome

7 Forward-ME Correspondence re SNOMED added June 2015

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Proposals for the classification of Chronic pain in ICD-11: Part 2

Post #326 Shortlink: http://wp.me/pKrrB-48Y

Click here for Part 1

Note: Since these proposed changes for Fibromyalgia were published on the ICD-11 Beta draft, in 2015, not a single comment has been posted via the ICD-11 Comment or Proposals mechanisms from stakeholder patient organizations, the clinicians who advise them, allied health professionals or disability lawyers.

Part 2: Fibromyalgia

On May 5, 2015, the ICD-11 Beta draft category, Fibromyalgia, was deleted from the Diseases of the musculoskeletal system and connective tissue chapter and relocated under Symptoms, signs, clinical forms, and abnormal clinical and laboratory findings, not elsewhere classified (currently numbered Chapter 21 in the Beta draft).*

*Source: Fibromyalgia Change History, 05 May 2015

For ICD-11, Fibromyalgia is proposed to be listed under the Symptoms, signs chapter, under a proposed new parent category called Multi-site primary chronic pains syndromes, under new parent class, Chronic primary pain, under new parent class, Chronic pain.

No rationale for a proposed change of chapter location and parent class was recorded in the Change History at the time of the edit.

See Part 1 and the June 2015 paper A classification of chronic pain for ICD-11. Rolf-Detlef Treede, Winfried Rief et al for the IASP working group’s proposals for locating irritable bowel syndrome; chronic nonspecific back pain; chronic pelvic pain; chronic widespread pain, fibromyalgia, and potentially some other conditions where chronic pain is a feature, under proposed new disorder category, Chronic primary pain.

Some of the categories listed under the new Chronic pain parent are proposed to be secondary parented (cross-referenced) to other chapters. But it is unclear from the proposals, whether Fibromyalgia is intended to be secondary parented to the Diseases of the musculoskeletal system and connective tissue chapter or to Diseases of the nervous system, or whether some disorders categorized under Chronic primary pain disorder would have no secondary parent chapter association beyond the Symptoms, signs chapter.

ICD-11 Beta Foundation Component

In the ICD-11 Foundation Component (where all ICD-11 entities are listed), Fibromyalgia is listed under Chronic pain > Primary chronic pain > Multi-site primary chronic pains syndromes, and assigned a Definition and other Content Model descriptors**.

View the Beta draft Foundation Component here: Fibromyalgia

**The current Beta draft Definitions for Fibromyalgia do not appear to have been revised from how the text had stood prior to its chapter relocation in May 2015.

(The likely source for the text entered into the Definition and Long Definition fields is this Orphanet page, apparently last updated in May 2007, but which appends links to more recent criteria and practice guidelines.)

 

From the ICD-11 Beta draft Foundation Component (accessed August 20, 2015):

Fibromyalgia

Fibro2208152


But in the Joint Linearization for Mortality and Morbidity Statistics (JLMMS), Fibromyalgia is not proposed to be listed with a discrete code assigned but rolled up as an Inclusion term under MAOE.112 Multi-site primary chronic pains syndromes.

View the Beta draft JLMMS linearization here: Fibromyalgia

FibroJMMLS1

This screenshot shows the hover text for Inclusion term, Fibromyalgia, in the JMMLS linearization:

Fibro as inlcusion term3

ICD-11 Beta drafting platform, public version: Joint Linearization for Mortality and Morbidity Statistics. Accessed August 20, 2015.

I am not a stakeholder or advocate for Fibromyalgia or for any of the several terms proposed to be categorized under the Primary chronic pain/Chronic primary pain parent term.

Consideration of the implications for aggregating Fibromyalgia, chronic widespread pain, irritable bowel syndrome, chronic nonspecific back pain, chronic pelvic pain and some other conditions where chronic pain is a predominate feature, under a new term in the Symptoms, signs chapter, on data collection, research, commissioning of services, access to treatments, reimbursement etc. is beyond the scope of this report.

But I urge stakeholder patient organizations, the clinicians who advise them, allied health professionals, occupational therapists and disability lawyers to scrutinize the IASP Task Force paper, the Beta draft rationale and proposals documents, proposed definitions and other descriptive content and to register with the Beta draft to submit comments and make formal suggestions for improvements via the Proposal Mechanism, (supported with references, where possible).

There is a considerable amount of psychosomatics in the Detailed Proposals document for Primary chronic pain. There is disorder description and criteria overlap with ICD-11’s proposed Bodily distress disorder; with DSM-5 Somatic symptom disorder “Predominate pain” specifier; with Somatoform pain disorder and the German ICD-10-GM: F45.41: Chronic pain disorder with somatic and psychological factors – a classification which Prof Winfried Rief was instrumental in getting inserted into the German ICD-10-GM, in 2009.

Prof Winfried Rief slide presentation:

Back in 2012, Chronic pain Task Force co-chair, Prof Winfried Rief, had presented tentative ideas for potential frameworks for a new ICD-11 chapter or section for pain conditions:

2012 SIP Symposium Workshop presentation: IASP and the Classification of Pain in ICD-11

Note in Slides #12-15, a number of the so-called, functional somatic syndromes, and in Slide #15, “Chronic Fatigue Syndrome, Neurasthenia” [sic], had been floated by Prof Rief, in 2012, as potential partners in any proposed new chapter or section for chronic pain.

Key documents for scrutiny by patient organizations, clinicians and advocates

A classification of chronic pain for ICD-11 Treede R, Rief W, et al, June 2015

Detailed Rationale/proposals/criteria documents:

Chronic pain 2015-May-26 Antonia Barke

Chronic primary pain 2015-June-29 Antonia Barke

Chronic visceral pain 2015-May-26 Antonia Barke

Chronic musculoskeletal pain 2015-May-26 Antonia Barke

Current ICD-11 Beta draft location Foundation Component listing for Irritable bowel syndrome

ICD-11 Beta draft Foundation Component listing for Fibromyalgia

ICD-11 Beta draft JLMMS listing for Fibromyalgia [rolled up as Inclusion in Multi-site primary chronic pains syndromes]

Click here for Part 1

 

Further reading

Medscape article: Chronic Pain Syndrome, Manish K Singh, MD; Chief Editor: Stephen Kishner, MD, MHA, updated July 15 2015

The Changing Nature of Fibromyalgia. Frederick Wolfe and Brian Walitt


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 labels currently assigned to ICD categories may change as chapters and parent/child hierarchies continue to be reorganized. The public version of the Beta draft is incomplete: not all Content Model parameters display or have been populated; definitions may be absent, awaiting revision or subject to further revision. The draft may contain errors and category omissions.
For some categories, detailed proposals/rationales/criteria are being posted by Topic Advisory Groups (TAGs) and can be viewed via the Proposals Mechanism, for which registration is required. Additional proposals/suggestions for modifications submitted by work groups or stakeholders which are awaiting review and decisions may also be found via the Proposals Mechanism.
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