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 http://www.who.int/classifications/icd/revision/icd11faq/en/

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 40 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 proposals can downloaded here

A copy of this post in PDF format is available here

International support for proposal for G93.3 legacy terms for ICD-11

Post #335 Shortlink: http://wp.me/pKrrB-4gL

The revision of the World Health Organization’s ICD-10 and development of ICD-11 was launched in 2007.

After several extensions to the timeline, WHO plans to present a version of ICD-11 at the World Health Assembly, in May 2018, with the intention of releasing the new edition at some point later that year. Endorsement will be sought later.

In order to be ready to present in May 2018, the final round of editing will need to have been completed by the end of 2017.

This November 2016 presentation by WHO’s Dr Robert Jakob sets out the targets and timelines, as they had stood last year.

There was a March 30 deadline for submission of proposals for consideration for inclusion in the 2018 version. Proposals received after that date are expected to be rolled forward for consideration for inclusion in the first annual maintenance and update revision of the new edition, in 2019.

On March 27, UK and US advocates, Suzy Chapman and Mary Dimmock, submitted a formal proposal via the ICD-11 Beta draft Proposal  Mechanism for the restructure of the ICD-10 G93.3 legacy categories: Postviral fatigue syndrome; Benign myalgic encephalomyelitis; and Chronic fatigue syndrome.

For a summary of the proposal see: A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two

 

International stakeholder support

There has been considerable support for the proposal, with over 540 “Agrees.” International patient, advocacy and research organizations and individual stakeholders have submitted more than 370 comments.

To date, these organizations have submitted responses:

UK
Invest in ME Research
Hope 4 ME & Fibro Northern Ireland
The Devon ME Support Group

Forward-ME  A group convened and chaired by the Countess of Mar. The members are:
ME Association
ME Research UK
Action for M.E.
TYMES Trust
reMEmber CFS
Blue Ribbon Awareness of ME (BRAME)
ME Trust
The 25% ME Group
Invest in ME

USA
Open Medicine Foundation
PANDORA Org
NJ CFIDS organization
Solve ME/CFS Initiative
The Massachusetts CFIDS/ME & FM Association

Canada
The National ME/FM Action Network (Canada)
ME/FM Society of BC, Canada
Millions Missing Canada
The AQEM (Association québécoise de l’encéphalomyélite myalgique du Québec)

EU
RME The Swedish Association for ME
Norges Myalgisk Encefalopati Forening (Norway)
The Belgian ME Association
The Danish ME Association
Groep ME Den Haag (Netherlands)
ME/cvs Vereniging, Nederland
Deutsche Gesellschaft für ME/CFS (Germany)

The European ME Alliance (EMEA)  The alliance comprises:
Belgium ME/CFS Association
ME Foreningen (Denmark)
Suomen CFS-Yhdistys (Finland)
Finlands CFS-förbund
Fatigatio e.V. (Germany)
Het Alternatief (Netherlands)
Icelandic ME Association
The Irish ME Trust
Norges ME-forening (Norway)
Liga SFC (Spain)
Riksföreningen för ME-patienter (RME) (Sweden)
Verein ME/CFS Schweiz (Switzerland)
Invest in ME (UK)

Australia
ME/CFS Australia (SA)
ME/CFS and Lyme Association of WA Committee

New Zealand
NZMEAction, New Zealand

Other International
The Japan ME Association

Facebook groups and other groups
Race to Solve ME/CFS
M.E. Alliance
Global Advocates for ME
Friends for Honesty about ME
Support for the Followers of Dr Myhill’s Protocol

Viewing our proposal

We are inviting international patient and advocacy organizations and other stakeholders to review and comment on the proposal.

In order to view the proposal in the Proposal Mechanism you will first need to register with the Beta platform (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 short tutorial video on how to register, here: http://bit.ly/ICD11regtutorial

When 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, here:

Suzy Chapman, Mary Dimmock Proposal for ICD-11

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

If you agree with our proposal, the “Agree” button is located directly under the blue Reference links.

If you would like to leave a comment on our proposal, the “add new comment” box is located right at the bottom of the web page, under the most recent comments.

Here is a Q & A addressing some of the questions raised in relation to our proposal:

Q & A version 1, April 2017 http://bit.ly/Proposal111QA

 

For a summary of our proposal see: A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two
For background to Part Two see: A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part One

Save

Q and A for Proposal for the ICD-10 G93.3 legacy terms for ICD-11

Post #332 Shortlink: http://wp.me/pKrrB-4g2

To ensure that the ICD-10 G93.3 legacy categories are present and appropriately classified in ICD-11, U.S. advocate Mary Dimmock and I submitted a formal and fully referenced proposal on March 27, 2017.

Here is a Q & A addressing some of the questions raised in relation to our proposal:

Q & A version 1, April 2017

Proposal for the ICD-10 G93.3 legacy terms for ICD-11, submitted by Suzy Chapman and Mary Dimmock on March 27, 2017

PDF: http://bit.ly/Proposal111QA

 

Q & A version 1 covers:

Q1: Your proposal for ICD-11 does not recommend retiring CFS. Why is that?
Q2: Are PVFS, (Benign) ME and CFS classified the same across all versions of ICD-10?
Q3: How is ICD Revision proposing to classify the G93.3 legacy terms?
Q4: Is there any proposal to classify the terms under Mental or behavioural disorders?
Q5: Will ICD-11 look and function differently to ICD-10?
Q6: What is the implementation date for ICD-11?
Q7: Is ICD-11’s “Bodily distress disorder” the same as Fink’s “Bodily distress syndrome”?
Q8: Where can I view the Beta draft and comment on your proposal?

 

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

Save

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

Save

Save

Save

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 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

Save

Save

Save

Save

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.

%d bloggers like this: