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Forward ME Group – Bodily Stress Syndrome
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Dx Revision Watch
Senior Member (Voting Rights)
A number of countries have been granted licenses by WHO to adapt ICD-10 for the specific needs of their country's health systems. These countries use what are called "clinical modifications" of ICD-10 and they may contain additional terms, or slight restructuring of chapter category blocks, or they may elect to omit some terms, altogether.
Australia uses ICD-10-AM; Canada uses ICD-10-CA, Germany uses ICD-10-GM and as you know, the U.S. uses ICD-10-CM and ICD-10-PCS for procedural codes.
The U.S. is responsible for managing the content of ICD-10-CM and its annual revision and update process. This is shared by NCHS and CDC.
ICD-10-CM absorbs selected of the annual and 3 yearly updates to the WHO's ICD-10, as used in the UK and in other member states.
But otherwise, NCHS and CDC manage the update and revision process independently from WHO, Geneva.
Proposals for corrections, additions or changes to existing terms in the ICD-10-CM are managed though this process https://www.cdc.gov/nchs/icd/icd10_maintenance.htm
The last update of ICD-10 is currently planned for 2019. After 2019, only corrections would be made.
But member states using the ICD-10 will continue to use it for some years to come. ICD Revision's, Dr Chris Chute, predicts it will take early implementers around 5 years to evaluate and prepare their health systems for transition from ICD-10 to ICD-11. UK's NHS Digital has yet to develop a projected timeline for evaluation and potential implementation of ICD-11, but we may have a tentative timeline later this year.
So once ICD-11 releases an initial version in June, implementation ain't going to happen for a number of years and ICD-11 won't be stable until around 2020/21. This is one reason why WHA endorsement isn't being sought this year - there is still a lot of work to be done.
As you know, the U.S. did not implement ICD-10-CM until October 2015.
WHO, Geneva are not overly keen on clinical modifications and would prefer that all countries used the same core version. There are ongoing discussions at WHO-FIC Network meetings about how best WHO might handle clinical modifications in the future, which I am monitoring. But for the time being, it should be assumed that the U.S. will need to develop a clinical modification of ICD-11.
Donna Pickett has given two presentations to NCVHS Full Committee Meetings, on "ICD-11 Update and Discussion"
The most recent, here: https://t.co/unUbHxPIq3
Slides here: https://www.ncvhs.hhs.gov/wp-content/uploads/2018/02/Update-on-ICD-11-Pickett-NCVHS.pdf
Slide #19
ICD-10-CM Implementation Timeline
and ICD-11 Implications for Morbidity
• Evaluation of ICD-11 for U.S. purposes (2018 – 2021? 2022?)
• NCVHS Hearings (2021-2027?)
• NPRM (?)
• Final Rule (?)
• NPRM (?)
• Final Rule (?)
• Interim Final Rule (?)
----------------------------
I suspect it will likely be 10 years or more before the U.S. has an ICD-11-CM ready for roll-out.
So until a clinical modification has been developed, tested and implemented, the U.S. will continue to use its own ICD-10-CM and ICD-10-PCS.
During the development process, NCHS/CDC could choose not to include certain new terms that have been added for ICD-11 (and there are hundreds of new inclusions).
For example, in the U.S., the DSM-5 is used for mental and behavioural disorders more frequently than the Mental and behavioural disorders chapter of ICD-10-CM. DSM-5 categories are mapped to ICD-10-CM codes for records, billing and reimbursement and would eventually need to be mapped across to ICD-11-CM codes.
ICD-11 includes the SSD term, but only under Synonyms to BDD.
NCHS/CDC might potentially propose to map DSM-5's SSD to a coded for SSD term for ICD-11-CM, or to move SSD to a specified Inclusion term under BDD, or to swap them round so that DSM-5's SSD maps to a coded for SSD, with BDD under Synonyms, or under Index terms or perhaps remove BDD entirely, as there is no definition or criteria for BDD included in DSM-5.
So there is scope for those countries which maintain a clinical modification to make adaptations to suit their country's requirements. And once ICD-11-CM is implemented, there are twice yearly public meetings to submit and discuss proposals and changes.
NCHS/CDC could potentially propose incorporating some of the new ICD-11 terms into ICD-10-CM for a smoother transition towards ICD-11. This is an option that Dr Chris Chute has often alluded to. But this would have to be done through the public C & M process - new terms cannot just be dropped into ICD-10-CM.
If this does not answer your Q, let me know.
Suzy
Australia uses ICD-10-AM; Canada uses ICD-10-CA, Germany uses ICD-10-GM and as you know, the U.S. uses ICD-10-CM and ICD-10-PCS for procedural codes.
The U.S. is responsible for managing the content of ICD-10-CM and its annual revision and update process. This is shared by NCHS and CDC.
ICD-10-CM absorbs selected of the annual and 3 yearly updates to the WHO's ICD-10, as used in the UK and in other member states.
But otherwise, NCHS and CDC manage the update and revision process independently from WHO, Geneva.
Proposals for corrections, additions or changes to existing terms in the ICD-10-CM are managed though this process https://www.cdc.gov/nchs/icd/icd10_maintenance.htm
The last update of ICD-10 is currently planned for 2019. After 2019, only corrections would be made.
But member states using the ICD-10 will continue to use it for some years to come. ICD Revision's, Dr Chris Chute, predicts it will take early implementers around 5 years to evaluate and prepare their health systems for transition from ICD-10 to ICD-11. UK's NHS Digital has yet to develop a projected timeline for evaluation and potential implementation of ICD-11, but we may have a tentative timeline later this year.
So once ICD-11 releases an initial version in June, implementation ain't going to happen for a number of years and ICD-11 won't be stable until around 2020/21. This is one reason why WHA endorsement isn't being sought this year - there is still a lot of work to be done.
As you know, the U.S. did not implement ICD-10-CM until October 2015.
WHO, Geneva are not overly keen on clinical modifications and would prefer that all countries used the same core version. There are ongoing discussions at WHO-FIC Network meetings about how best WHO might handle clinical modifications in the future, which I am monitoring. But for the time being, it should be assumed that the U.S. will need to develop a clinical modification of ICD-11.
Donna Pickett has given two presentations to NCVHS Full Committee Meetings, on "ICD-11 Update and Discussion"
The most recent, here: https://t.co/unUbHxPIq3
Slides here: https://www.ncvhs.hhs.gov/wp-content/uploads/2018/02/Update-on-ICD-11-Pickett-NCVHS.pdf
Slide #19
ICD-10-CM Implementation Timeline
and ICD-11 Implications for Morbidity
• Evaluation of ICD-11 for U.S. purposes (2018 – 2021? 2022?)
• NCVHS Hearings (2021-2027?)
• NPRM (?)
• Final Rule (?)
• NPRM (?)
• Final Rule (?)
• Interim Final Rule (?)
----------------------------
I suspect it will likely be 10 years or more before the U.S. has an ICD-11-CM ready for roll-out.
So until a clinical modification has been developed, tested and implemented, the U.S. will continue to use its own ICD-10-CM and ICD-10-PCS.
During the development process, NCHS/CDC could choose not to include certain new terms that have been added for ICD-11 (and there are hundreds of new inclusions).
For example, in the U.S., the DSM-5 is used for mental and behavioural disorders more frequently than the Mental and behavioural disorders chapter of ICD-10-CM. DSM-5 categories are mapped to ICD-10-CM codes for records, billing and reimbursement and would eventually need to be mapped across to ICD-11-CM codes.
ICD-11 includes the SSD term, but only under Synonyms to BDD.
NCHS/CDC might potentially propose to map DSM-5's SSD to a coded for SSD term for ICD-11-CM, or to move SSD to a specified Inclusion term under BDD, or to swap them round so that DSM-5's SSD maps to a coded for SSD, with BDD under Synonyms, or under Index terms or perhaps remove BDD entirely, as there is no definition or criteria for BDD included in DSM-5.
So there is scope for those countries which maintain a clinical modification to make adaptations to suit their country's requirements. And once ICD-11-CM is implemented, there are twice yearly public meetings to submit and discuss proposals and changes.
NCHS/CDC could potentially propose incorporating some of the new ICD-11 terms into ICD-10-CM for a smoother transition towards ICD-11. This is an option that Dr Chris Chute has often alluded to. But this would have to be done through the public C & M process - new terms cannot just be dropped into ICD-10-CM.
If this does not answer your Q, let me know.
Suzy
Dx Revision Watch
Senior Member (Voting Rights)
Extract from most recent Summary Report, WHO-FIC Network Council Small Executive Group (Council-SEG), Date: 8 March 2018
https://b98d026c-a-62cb3a1a-s-sites.googlegroups.com/site/whoficcouncil/teleconferences/2018.03.08 - WHO-FIC Council SEG.pdf
WHO-FIC Network Council Small
Executive Group (Council-SEG)
Date: 8 March 2018
Time: 13:00 (GVA time)
Meeting #: 874164420
Draft report, may be subject to correction
Participants in teleconference:
Robert Jakob (WHO/ICD Revision), Donna Pickett (CDC, ICD-11 Joint Task Force, ICD-11 CSAC), Lynn Bracewell (NHS Digital, Co-chair, WHO-FIC Network Council-SEG) and others.
Extract
d) ICD-11 Maintenance and Update / Governance
3.9. Background
• First round of [Ed: annual] proposals/discussions may be held prior to the Annual meeting so that the maintenance process can be started within the CSAC
• The MSAC is also already working, dealing with a series of clinical questions that have come in on topics such as Sepsis, etc.
• June release of ICD-11 is in preparation, though exact date is not yet confirmed (to be arranged with DGO and other related offices)*
• The version released in June 2018 (ICD-11-MMS: Version for Member State Implementation) will remain stable until January 2019 (Executive Board) in preparation for [Ed: endorsement at] WHA 2019, with only changes to the implementation support in the lead-up to May 2019**
• There was a question was raised about the implementation version and how confident users can be that this will not change after May 2019. WHO confirmed that there are a few known issues, but there is no reason to suspect that there would be other major risks. It was agreed that WHO will communicate clearly what is meant by “implementation version” to manage Member State expectations
• There will be an WHO Executive Board briefing on ICD-11 progress in May 2018 in preparations for the June release and the WHA May 2019. The WHO Executive Board will be asked to make a recommendation to countries that they begin to prepare for implementation using this version.
• There had been a concern that ICD-11 would not go to WHA, but this is not the case.
*Ed: I have seen a date of June 20 quoted by a WHO official.
** Ed: WHO's Dr John Grove has confirmed that the Beta draft is scheduled for freezing at the end of May, in preparation for release of the initial version of ICD-11 MMS in June.
https://b98d026c-a-62cb3a1a-s-sites.googlegroups.com/site/whoficcouncil/teleconferences/2018.03.08 - WHO-FIC Council SEG.pdf
WHO-FIC Network Council Small
Executive Group (Council-SEG)
Date: 8 March 2018
Time: 13:00 (GVA time)
Meeting #: 874164420
Draft report, may be subject to correction
Participants in teleconference:
Robert Jakob (WHO/ICD Revision), Donna Pickett (CDC, ICD-11 Joint Task Force, ICD-11 CSAC), Lynn Bracewell (NHS Digital, Co-chair, WHO-FIC Network Council-SEG) and others.
Extract
d) ICD-11 Maintenance and Update / Governance
3.9. Background
• First round of [Ed: annual] proposals/discussions may be held prior to the Annual meeting so that the maintenance process can be started within the CSAC
• The MSAC is also already working, dealing with a series of clinical questions that have come in on topics such as Sepsis, etc.
• June release of ICD-11 is in preparation, though exact date is not yet confirmed (to be arranged with DGO and other related offices)*
• The version released in June 2018 (ICD-11-MMS: Version for Member State Implementation) will remain stable until January 2019 (Executive Board) in preparation for [Ed: endorsement at] WHA 2019, with only changes to the implementation support in the lead-up to May 2019**
• There was a question was raised about the implementation version and how confident users can be that this will not change after May 2019. WHO confirmed that there are a few known issues, but there is no reason to suspect that there would be other major risks. It was agreed that WHO will communicate clearly what is meant by “implementation version” to manage Member State expectations
• There will be an WHO Executive Board briefing on ICD-11 progress in May 2018 in preparations for the June release and the WHA May 2019. The WHO Executive Board will be asked to make a recommendation to countries that they begin to prepare for implementation using this version.
• There had been a concern that ICD-11 would not go to WHA, but this is not the case.
*Ed: I have seen a date of June 20 quoted by a WHO official.
** Ed: WHO's Dr John Grove has confirmed that the Beta draft is scheduled for freezing at the end of May, in preparation for release of the initial version of ICD-11 MMS in June.
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Sorry I haven’t read through the thread, so sorry if this has already been addressed, but I contacted Forward ME, as it confused me, who kindly confirmed this a typo and the word ‘mental’ should be ‘physcial’
Dx Revision Watch
Senior Member (Voting Rights)
An update:
The "briefing document" by Dr Diane O'Leary had been published on the website of ME Research UK on April 3. It had also been published on the Forward-ME website with no caveats in relation to statements made within that document.
On Monday, the document was removed from ME Research UK's website but remained on the site of Forward-ME.
Overnight, a "Communication from the Countess of Mar 9 April 2018" has been posted on the Forward-ME website.
I remain concerned about some of the statements made in this new document, which also reiterates misconceptions about the scope of the content of the current ICD-10 primary care publication (known as ICD-10 PHC) and of the revision in progress towards an ICD-11 PHC.
I also have concerns that the classification and terminology systems mandated for use in NHS clinical settings (ICD-10 core version and SNOMED CT) have not been set out. I have additional issues of concern within the "Communication from the Countess of Mar" and I do not intend to comment on the document at this point but may comment later.
The core edition of ICD-11 is planned to be frozen on May 30, in preparation for the release of an initial version in June. It will take several years for early implementers to evaluate, prepare and transition from ICD-10 to ICD-11. Member states will implement the new edition at their own pace and according to the requirements of their country's health systems. In the meantime, member states will continue to use ICD-10.
NHS Digital has yet to release a tentative timeline for the evaluation and potential transition to ICD-11 in primary and secondary care settings.
There has been no date publicly released by WHO for the completion and publication of the ICD-11 PHC primary care publication, which is being revised by an external workgroup chaired by Prof, Sir David Goldberg (who had led the drafting of the ICD-10 PHC); Vice-chairs: Dr Michael Klinkman, USA; Dr Geoffrey Reed, USA, seconded to the ICD Revision Project. The workgroup making recommendations is accountable to the WHO.
Suzy Chapman
Dx Revision Watch
Edited in February 2019 to add link. Note that the link for this document had been taken off the Forward-ME landing page by September 2018 and there is no longer any link for the statement on any of the Forward-ME webpages:
Communication from the Countess of Mar 9 April 2018
http://www.forward-me.org.uk/Reports/Communication from the Countess of Mar regardng BSS.pdf
The "briefing document" by Dr Diane O'Leary had been published on the website of ME Research UK on April 3. It had also been published on the Forward-ME website with no caveats in relation to statements made within that document.
On Monday, the document was removed from ME Research UK's website but remained on the site of Forward-ME.
Overnight, a "Communication from the Countess of Mar 9 April 2018" has been posted on the Forward-ME website.
I remain concerned about some of the statements made in this new document, which also reiterates misconceptions about the scope of the content of the current ICD-10 primary care publication (known as ICD-10 PHC) and of the revision in progress towards an ICD-11 PHC.
I also have concerns that the classification and terminology systems mandated for use in NHS clinical settings (ICD-10 core version and SNOMED CT) have not been set out. I have additional issues of concern within the "Communication from the Countess of Mar" and I do not intend to comment on the document at this point but may comment later.
The core edition of ICD-11 is planned to be frozen on May 30, in preparation for the release of an initial version in June. It will take several years for early implementers to evaluate, prepare and transition from ICD-10 to ICD-11. Member states will implement the new edition at their own pace and according to the requirements of their country's health systems. In the meantime, member states will continue to use ICD-10.
NHS Digital has yet to release a tentative timeline for the evaluation and potential transition to ICD-11 in primary and secondary care settings.
There has been no date publicly released by WHO for the completion and publication of the ICD-11 PHC primary care publication, which is being revised by an external workgroup chaired by Prof, Sir David Goldberg (who had led the drafting of the ICD-10 PHC); Vice-chairs: Dr Michael Klinkman, USA; Dr Geoffrey Reed, USA, seconded to the ICD Revision Project. The workgroup making recommendations is accountable to the WHO.
Suzy Chapman
Dx Revision Watch
Edited in February 2019 to add link. Note that the link for this document had been taken off the Forward-ME landing page by September 2018 and there is no longer any link for the statement on any of the Forward-ME webpages:
Communication from the Countess of Mar 9 April 2018
http://www.forward-me.org.uk/Reports/Communication from the Countess of Mar regardng BSS.pdf
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Russell Fleming
Senior Member (Voting Rights)
Here's the updated communication from Forward ME referred to in Suzy's post above and available on the Forward ME website:
9th April 2018:
http://www.forward-me.org.uk/Reports/Communication from the Countess of Mar regardng BSS.pdf
And the earlier document from 3rd April 2018:
http://www.forward-me.org.uk/Reports/BODILY STRESS SYNDROME INFO SHEET CORRECTED.pdf
9th April 2018:
http://www.forward-me.org.uk/Reports/Communication from the Countess of Mar regardng BSS.pdf
And the earlier document from 3rd April 2018:
http://www.forward-me.org.uk/Reports/BODILY STRESS SYNDROME INFO SHEET CORRECTED.pdf
Dx Revision Watch
Senior Member (Voting Rights)
Overnight, a revised document by Dr O'Leary has been published on the website of ME Research UK. This is a substantial revision to the first "briefing document" which was pulled on Monday.
This new document is entitled *IMMEDIATE ACTION NEEDED*
It had been my understanding that the presentation and (initial) briefing document delivered by Dr O'Leary at the 28 March Forward-ME meeting were intended to be discussed by Forward-ME org reps at the next Forward-ME meeting, to further discuss its content and what, if any, involvement Forward-ME might have by way of follow up.
Since a revised document has now been published, I shall need to edit my earlier statement in Post #65.
Whilst the second Dr O'Leary document has undergone substantial revision, I remain concerned about some of the statements made within it and I am unable to support or circulate either the original document or the revised version published on 10 April.
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@Dx Revision Watch
Do you have a link to this latest document dated the 10th April 2018, to which you refer?
I have just been on the ME Research UK website, and this latest document no longer appears to be on the site; the latest entry in their 'latest news section' refers to the Forward-ME group letter dated the 5th April 2018.
Wishing everyone improved health and every happiness. John
Do you have a link to this latest document dated the 10th April 2018, to which you refer?
I have just been on the ME Research UK website, and this latest document no longer appears to be on the site; the latest entry in their 'latest news section' refers to the Forward-ME group letter dated the 5th April 2018.
Wishing everyone improved health and every happiness. John
Dx Revision Watch
Senior Member (Voting Rights)
@Dx Revision Watch
Do you have a link to this latest document dated the 10th April 2018, to which you refer?
I have just been on the ME Research UK website, and this latest document no longer appears to be on the site; the latest entry in their 'latest news section' refers to the Forward-ME group letter dated the 5th April 2018.
Wishing everyone improved health and every happiness. John
It is accessible from the same page, at the foot of the article.
However, whilst this second document has undergone substantial revision, I remain concerned about some of the statements made within it and I am unable to support or circulate either the original document or the revised version published on 10 April.
I do not intend to comment on either document at this point but may comment later.
Dx Revision Watch
Senior Member (Voting Rights)
In a week when a document has been circulated claiming that "Criteria for BDD are not particularly problematic for ME patients..." I have published the following comment on the ICD-11 Proposal Mechanism. This comment is submitted in response to my own Proposal for Addition of Exclusions under Bodily distress disorder, which I submitted in March 2017 and which has not yet been processed.
These comments go directly to ICD Revision and ICD Revision/WHO/MASC is the audience, so I make no apologies for the length. Because of the forum message character limit, it is being posted over more than one message.
ICD-11 Beta draft Proposal Mechanism (registration required for access):
https://icd.who.int/dev11/proposals...lGroupId=eb30c64f-dd10-41a2-8edc-f254cf431d73
Suzy Chapman 2018-Apr-13 - 12:49 UTC
Declarations: This comment has been prepared by Suzy Chapman and Mary Dimmock. Suzy Chapman has no affiliations and advises ME organizations on an ad hoc basis. Mary Dimmock serves on the Board of Solve ME/CFS Initiative and also works with other ME organizations. This comment is submitted in personal capacities and not on behalf of any organizations. The authors jointly submitted a proposal for the ICD-10 G93.3 legacy entities on March 27, 2017 [1].
Dr John Grove (Director, Information, Evidence, and Research) has confirmed that proposals for changes to the draft submitted before March 30, 2017 are taken into account for the initial release in June 2018; that the draft is planned to be frozen at the end of May for finalization in preparation for release of an initial version of ICD-11 in June.
The proposal for addition of exclusions for the ICD entities, Chronic fatigue syndrome; Benign myalgic encephalomyelitis; and Postviral fatigue syndrome had met the March 30, 2017 deadline. With just a few weeks left before the draft is finalized, it is a concern that this proposal remains unprocessed.
An earlier proposal, submitted on December 30, 2014, for addition of exclusions for these three ICD entities was marked as Rejected by "Team 2 WHO" on November 15, 2016, with the rejection note: "Exclusion terms must exist in the classification as entities to enable linking." [2].
Following a period of four years' unexplained absence from the public version of the Beta platform, all three ICD-10 G93.3 legacy terms were restored to the draft by "Team WHO" under parent block, Other diseases of the nervous system, on March 26, 2017 [3]. A longstanding request for exclusions for Chronic fatigue syndrome; and Benign myalgic encephalomyelitis under Fatigue (in the Symptoms, signs chapter) was approved and implemented on the same date.
Therefore, the earlier absence of the three G93.3 legacy entities from the Beta draft is no longer a barrier for consideration of addition of exclusions for these terms.
Necessity for exclusions:
The full clinical description and diagnostic guideline texts that are being drafted for the "Clinical Descriptions and Diagnostic Guidelines for ICD-11 Mental and Behavioural Disorders" publication are not available for public stakeholder scrutiny [4]. But it is evident from the disorder Descriptions in the Beta draft, from position papers and progress reports published by the chair of the Somatic Distress and Dissociative Disorders Working Group [10][11] and from commentaries and comparisons in the literature, that as defined for ICD-11, the proposed "Bodily distress disorder" diagnostic construct has strong conceptual, characterization and criteria alignment with DSM-5 Somatic symptom disorder [5]. For ICD-11, Somatic symptom disorder is listed under Synonyms to Bodily distress disorder.
Thresholds for meeting criteria for a diagnosis of ICD-11's defining of "Bodily distress disorder" or for a diagnosis of DSM-5 Somatic symptom disorder are substantially lower than those of the somatoform disorders these very similar disorder constructs replace.
Frances (2013), and Frances and Chapman (2013) argue that the low sensitivity and specificity of the Somatic symptom disorder criteria - based on difficult to measure psychobehavioural responses and reliant on subjective clinical judgements as to whether a patient's response to chronic, distressing symptoms is "excessive" or "disproportionate" or whether they are devoting "excessive time, energy and attention" to their symptoms or health concerns - present significant potential for the application of an inappropriate mental disorder diagnosis [6][7].
In a 2013 BMJ commentary, Professor Allen Frances, who had chaired the Task Force for the drafting of DSM-IV, highlighted the particular vulnerabilities of some disease groups. Patients with chronic, multisystem diseases like chronic fatigue syndrome and myalgic encephalomyelitis, or who are awaiting a diagnosis, are considered to be particularly vulnerable to misapplication of a diagnosis of Somatic symptom disorder, or of receiving an additional "bolt-on" diagnosis of Somatic symptom disorder [8].
A misdiagnosis or a "bolt-on" mental disorder diagnosis can have far-reaching implications for patients: negatively impacting on access to medical investigations, tests, treatments and choice of service provision; on the payment of employment, medical and disability insurance and the length of time for which insurers are prepared to pay out; on the perceptions of agencies involved with assessment and provision of welfare benefits, social care, disability adaptations, education and workplace accommodations; on the perceptions of social services and child protection agencies in the case of children and young people.
WHO has conducted no field trials specifically testing the safety, validity and reliability of the "Bodily distress disorder" definition and criteria, as defined for ICD-11, in any patient populations.
With no body of evidence for the safety, validity, reliability, utility, prevalence and acceptability of the S3DWG's proposed diagnostic construct, we are not persuaded that the S3DWG has incorporated adequate safeguards for this patient population.
Our recommendation remains that exclusions are required for the entities: Chronic fatigue syndrome; Benign myalgic encephalomyeltis; and Postviral fatigue syndrome to mitigate the risk of misdiagnosis with, or misapplication of an additional mental disorder diagnosis of Bodily distress disorder.
No rationale for the S3DWG's choice of nomenclature:
Since first publishing its emerging proposals, the Somatic Distress and Dissociative Disorders Working Group (S3DWG) has proposed to call this new, single ICD category, "Bodily distress disorder."
The group is aware that this term is already used by researchers and in the field interchangeably with the diagnostic construct term, "Bodily distress syndrome," and that this has been the case since at least 2007 [21].
ICD Revision has been requested several times to provide stakeholders with the rationale for the recommendation to repurpose a disorder term which is already strongly associated with the Fink et al. (2010) Bodily distress syndrome diagnosis. ICD Revision has remained silent on this.
It is of considerable concern to stakeholders that the S3DWG group has failed to acknowledge and discuss within its progress reports the potential for confusion and conflation between its own SSD-like "Bodily distress disorder" and the differently conceptualised, Fink et al. (2010) Bodily distress syndrome construct. Nor has the working group's output discussed the implications for maintaining the integrity of its own construct within and beyond ICD-11 [9][10].
The Fink et al. (2010) Bodily distress syndrome diagnostic construct is already operationalized in Denmark and several other EU countries, in research and clinical settings. It is differently conceptualized, has a very different set of criteria and is intended to capture a different patient population to the ICD-11 "Bodily distress disorder" category.
Fink et al. (2010) consider their "Bodily distress syndrome" construct has the ability to capture the ICD-10 somatoform disorders, neurasthenia, "functional symptoms," noncardiac chest pain, chronic pain disorder, MCS and some others, but also subsume chronic fatigue syndrome, myalgic encephalomyelitis, fibromyalgia and irritable bowel syndrome (considered by Fink and colleagues to be artifacts of medical specialization and manifestations of a similar, underlying disorder with a common, hypothesized aetiology) under a single, unifying "Bodily distress syndrome" diagnosis [11][21].
That Somatic symptom disorder and the Fink et al. (2010) Bodily distress syndrome are differently conceptualized, have different criteria sets and potentially capture different patient populations, has been acknowledged by DSM-5 Somatic Symptom Disorder Work Group chair, Joel E Dimsdale, and by Creed, Henningsen and Fink [12][13][14].
In January 2015, the Senior Project Officer for the Revision of ICD-10 Mental, behavioural or neurodevelopmental disorders agreed with one of the authors that there is potential for confusion with the Fink et al. construct; that they are conceptually different; that this was not ideal; and that it would be discussed further with the working group [15].
Since no potential alternative name has been advanced and since no rationale for their specific choice of name has been provided, we conclude that the S3DWG working group has dismissed legitimate concerns for a very obvious flaw in its proposals.
We consider this unsound classificatory practice for ICD. It does not accord with the working groups' Terms of Reference and we request that the Senior Project Officer and MSAC give this their attention as a matter of urgency.
Continued in next message
These comments go directly to ICD Revision and ICD Revision/WHO/MASC is the audience, so I make no apologies for the length. Because of the forum message character limit, it is being posted over more than one message.
ICD-11 Beta draft Proposal Mechanism (registration required for access):
https://icd.who.int/dev11/proposals...lGroupId=eb30c64f-dd10-41a2-8edc-f254cf431d73
Suzy Chapman 2018-Apr-13 - 12:49 UTC
Declarations: This comment has been prepared by Suzy Chapman and Mary Dimmock. Suzy Chapman has no affiliations and advises ME organizations on an ad hoc basis. Mary Dimmock serves on the Board of Solve ME/CFS Initiative and also works with other ME organizations. This comment is submitted in personal capacities and not on behalf of any organizations. The authors jointly submitted a proposal for the ICD-10 G93.3 legacy entities on March 27, 2017 [1].
Dr John Grove (Director, Information, Evidence, and Research) has confirmed that proposals for changes to the draft submitted before March 30, 2017 are taken into account for the initial release in June 2018; that the draft is planned to be frozen at the end of May for finalization in preparation for release of an initial version of ICD-11 in June.
The proposal for addition of exclusions for the ICD entities, Chronic fatigue syndrome; Benign myalgic encephalomyelitis; and Postviral fatigue syndrome had met the March 30, 2017 deadline. With just a few weeks left before the draft is finalized, it is a concern that this proposal remains unprocessed.
An earlier proposal, submitted on December 30, 2014, for addition of exclusions for these three ICD entities was marked as Rejected by "Team 2 WHO" on November 15, 2016, with the rejection note: "Exclusion terms must exist in the classification as entities to enable linking." [2].
Following a period of four years' unexplained absence from the public version of the Beta platform, all three ICD-10 G93.3 legacy terms were restored to the draft by "Team WHO" under parent block, Other diseases of the nervous system, on March 26, 2017 [3]. A longstanding request for exclusions for Chronic fatigue syndrome; and Benign myalgic encephalomyelitis under Fatigue (in the Symptoms, signs chapter) was approved and implemented on the same date.
Therefore, the earlier absence of the three G93.3 legacy entities from the Beta draft is no longer a barrier for consideration of addition of exclusions for these terms.
Necessity for exclusions:
The full clinical description and diagnostic guideline texts that are being drafted for the "Clinical Descriptions and Diagnostic Guidelines for ICD-11 Mental and Behavioural Disorders" publication are not available for public stakeholder scrutiny [4]. But it is evident from the disorder Descriptions in the Beta draft, from position papers and progress reports published by the chair of the Somatic Distress and Dissociative Disorders Working Group [10][11] and from commentaries and comparisons in the literature, that as defined for ICD-11, the proposed "Bodily distress disorder" diagnostic construct has strong conceptual, characterization and criteria alignment with DSM-5 Somatic symptom disorder [5]. For ICD-11, Somatic symptom disorder is listed under Synonyms to Bodily distress disorder.
Thresholds for meeting criteria for a diagnosis of ICD-11's defining of "Bodily distress disorder" or for a diagnosis of DSM-5 Somatic symptom disorder are substantially lower than those of the somatoform disorders these very similar disorder constructs replace.
Frances (2013), and Frances and Chapman (2013) argue that the low sensitivity and specificity of the Somatic symptom disorder criteria - based on difficult to measure psychobehavioural responses and reliant on subjective clinical judgements as to whether a patient's response to chronic, distressing symptoms is "excessive" or "disproportionate" or whether they are devoting "excessive time, energy and attention" to their symptoms or health concerns - present significant potential for the application of an inappropriate mental disorder diagnosis [6][7].
In a 2013 BMJ commentary, Professor Allen Frances, who had chaired the Task Force for the drafting of DSM-IV, highlighted the particular vulnerabilities of some disease groups. Patients with chronic, multisystem diseases like chronic fatigue syndrome and myalgic encephalomyelitis, or who are awaiting a diagnosis, are considered to be particularly vulnerable to misapplication of a diagnosis of Somatic symptom disorder, or of receiving an additional "bolt-on" diagnosis of Somatic symptom disorder [8].
A misdiagnosis or a "bolt-on" mental disorder diagnosis can have far-reaching implications for patients: negatively impacting on access to medical investigations, tests, treatments and choice of service provision; on the payment of employment, medical and disability insurance and the length of time for which insurers are prepared to pay out; on the perceptions of agencies involved with assessment and provision of welfare benefits, social care, disability adaptations, education and workplace accommodations; on the perceptions of social services and child protection agencies in the case of children and young people.
WHO has conducted no field trials specifically testing the safety, validity and reliability of the "Bodily distress disorder" definition and criteria, as defined for ICD-11, in any patient populations.
With no body of evidence for the safety, validity, reliability, utility, prevalence and acceptability of the S3DWG's proposed diagnostic construct, we are not persuaded that the S3DWG has incorporated adequate safeguards for this patient population.
Our recommendation remains that exclusions are required for the entities: Chronic fatigue syndrome; Benign myalgic encephalomyeltis; and Postviral fatigue syndrome to mitigate the risk of misdiagnosis with, or misapplication of an additional mental disorder diagnosis of Bodily distress disorder.
No rationale for the S3DWG's choice of nomenclature:
Since first publishing its emerging proposals, the Somatic Distress and Dissociative Disorders Working Group (S3DWG) has proposed to call this new, single ICD category, "Bodily distress disorder."
The group is aware that this term is already used by researchers and in the field interchangeably with the diagnostic construct term, "Bodily distress syndrome," and that this has been the case since at least 2007 [21].
ICD Revision has been requested several times to provide stakeholders with the rationale for the recommendation to repurpose a disorder term which is already strongly associated with the Fink et al. (2010) Bodily distress syndrome diagnosis. ICD Revision has remained silent on this.
It is of considerable concern to stakeholders that the S3DWG group has failed to acknowledge and discuss within its progress reports the potential for confusion and conflation between its own SSD-like "Bodily distress disorder" and the differently conceptualised, Fink et al. (2010) Bodily distress syndrome construct. Nor has the working group's output discussed the implications for maintaining the integrity of its own construct within and beyond ICD-11 [9][10].
The Fink et al. (2010) Bodily distress syndrome diagnostic construct is already operationalized in Denmark and several other EU countries, in research and clinical settings. It is differently conceptualized, has a very different set of criteria and is intended to capture a different patient population to the ICD-11 "Bodily distress disorder" category.
Fink et al. (2010) consider their "Bodily distress syndrome" construct has the ability to capture the ICD-10 somatoform disorders, neurasthenia, "functional symptoms," noncardiac chest pain, chronic pain disorder, MCS and some others, but also subsume chronic fatigue syndrome, myalgic encephalomyelitis, fibromyalgia and irritable bowel syndrome (considered by Fink and colleagues to be artifacts of medical specialization and manifestations of a similar, underlying disorder with a common, hypothesized aetiology) under a single, unifying "Bodily distress syndrome" diagnosis [11][21].
That Somatic symptom disorder and the Fink et al. (2010) Bodily distress syndrome are differently conceptualized, have different criteria sets and potentially capture different patient populations, has been acknowledged by DSM-5 Somatic Symptom Disorder Work Group chair, Joel E Dimsdale, and by Creed, Henningsen and Fink [12][13][14].
In January 2015, the Senior Project Officer for the Revision of ICD-10 Mental, behavioural or neurodevelopmental disorders agreed with one of the authors that there is potential for confusion with the Fink et al. construct; that they are conceptually different; that this was not ideal; and that it would be discussed further with the working group [15].
Since no potential alternative name has been advanced and since no rationale for their specific choice of name has been provided, we conclude that the S3DWG working group has dismissed legitimate concerns for a very obvious flaw in its proposals.
We consider this unsound classificatory practice for ICD. It does not accord with the working groups' Terms of Reference and we request that the Senior Project Officer and MSAC give this their attention as a matter of urgency.
Continued in next message
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Dx Revision Watch
Senior Member (Voting Rights)
Continued from previous message
Ambiguity, confusion and conflation:
The authors have demonstrated elsewhere on the Beta platform [16] that the name which the S3DWG working group proposes to use for its single category replacement for most of the somatoform disorders has a history of usage in the literature and in the field interchangeably with that of the differently conceptualized, Fink et al. (2010) disorder construct.
One may observe frequent instances where the term "Bodily distress disorder" is being used when the disorder construct that is actually being discussed within the paper, editorial or presentation is the Fink et al. (2010) "Bodily distress syndrome (BDS)" diagnostic construct. In some cases, one also observes the conflations, "bodily distress syndrome or disorder" and "bodily distress syndrome/disorder."
Five examples:
"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"? [17].
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 [18].
The S3DWG's proposed term is seen, here, as "Bodily distress disorder (Fink and Schroder 2010)" in Slide #3 of a symposium presentation: An introduction to "medically unexplained" persistent physical symptoms. (Professor Trudie Chalder, Department of Psychological Medicine, King’s Health Partners, 2014) [19].
In this paper: Medium- and long-term prognostic validity of competing classification proposals for the former somatoform disorders (Schumacher et al. 2017) the authors compares prognostic validity of DSM-5 "somatic symptom disorder (SSD)" with "bodily distress disorder (BDD)" and "polysymptomatic distress disorder (PSDD)" and discuss their respective potential as alternatives to SSD for the replacement of the somatoform disorders for the forthcoming ICD-11 [20]. 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."
In this (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." [21].
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 the Fink et al (2010) disorder term "Bodily distress syndrome (BDS)", that some researchers and clinicians, including Fink et al., themselves, do not distinguish between these two terms, and that as a result of the S3DWG's perversity, researchers and researcher/practitioners are now struggling to differentiate between two divergent disorder constructs.
Why did ICD Revision not identify this flaw, anticipate the potential for confusion and conflation and address this problem earlier in the development process?
SNOMED CT International:
An (undefined) Concept: Bodily distress disorder was added to SNOMED CT International for the July 31, 2017 release. It was initially assigned under Parent: SCTID: 386585008 Functional disorder (disorder).
With no associated definition or descriptive text, it was important to establish what SNOMED International understood by the term, "Bodily distress disorder" and the origin of the request for its addition to the SNOMED CT terminology system.
SNOMED International's Head of Terminology clarified in October 2017 that Concept SCTID: 723916001 Bodily distress disorder (disorder) was added by the team working on the SNOMED CT and ICD-11 MMS mapping project and that the Concept was added as "an exact match" for the ICD-11* term, Bodily distress disorder.
Following a literature review, the terminology managers determined that the Concept would be more appropriately relocated under the SCTID: 74732009 Mental disorder (disorder) Parent, to better reflect the conceptualization and chapter placement in ICD-11. This change of Parent was effected for the January 31, 2018 Release of the International Edition.
The issue of ambiguity, confusion and conflation between these two disorder constructs was discussed with the terminology managers.
In the absence of a SNOMED CT textual definition/description for Bodily distress disorder and in the absence of the Somatic symptom disorder Synonym term to help clarify that SNOMED CT's Bodily distress disorder concept is an exact match for ICD-11's Bodily distress disorder, it was suggested that the inclusion of Bodily distress disorder's three severities of psychobehavioural responses might assist clinicians, coders and other end users in distinguishing the SNOMED CT/ICD-11 Bodily distress disorder concept from the similarly named, but differently conceptualized, Bodily distress syndrome, as defined by Fink et al (2010), which has just two severities.
This request was approved and we are advised that the three severity specifiers (Mild; Moderate; and Severe) are scheduled to be added to the July 31, 2018 release, under Children to Bodily distress disorder.
SNOMED International terminology managers had no difficultly recognising the potential for confusion and conflation; nor the implications for maintaining construct integrity that will likely result from the introduction of a new disorder category into ICD-11, which is proposed to be assigned a name historically associated with a divergent diagnostic construct/criteria set that is inclusive of a different patient population.
Our recommendation is that exclusions are required for the entities: Chronic fatigue syndrome; Benign myalgic encephalomyeltis; and Postviral fatigue syndrome under Bodily distress disorder in ICD-11 to mitigate the risk of confusion and conflation with Bodily distress syndrome, a diagnostic construct intended to subsume these ICD entities.
Will ICD Revision please give this attention before the draft is finalized in May?
Will ICD Revision also consider the 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, coders and commissioners; the statistical implications for data reporting and analysis, and most importantly, the implications for patients?
*For SNOMED CT UK Edition, Concept SCTID: 723916001 Bodily distress disorder is cross mapped in the SNOMED CT to ICD-10 mapping classification to ICD-10 F45.9 Somatoform disorder, unspecified.
References:
1 Complex Hierarchical Changes Proposal, Other disorders of the nervous system. Submitted: March 27, 2017; Typographical edit: March 31, 2017 https://icd.who.int/dev11/proposals...lGroupId=4b26ab6a-393f-4a39-9051-4ac1d4b1a55a
2 Content Enhancement Proposal, Bodily distress disorder. Submitted: December 30, 2014 https://icd.who.int/dev11/proposals...lGroupId=16b0ba12-3e6d-4b6f-8b0c-3b6cf7094c2e
3 ICD-11 MMS, Postviral fatigue syndrome https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/569175314
4 Global Clinical Practice Network, Clinical Descriptions and Diagnostic Guidelines for ICD-11 Mental and Behavioural Disorders
https://gcp.network/en/icd-11-guidelines
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. DSM-5 Somatic Symptom Disorder. J Nerv Ment Dis. 2013 Jun;201(6):530-1. [PMID: 23719325]
7 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]
8 Frances A. The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill. BMJ. 2013 Mar 18;346:f1580. [PMID: 23511949]
9 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]
10 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]
11 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]
12 Medically Unexplained Symptoms, Somatisation and Bodily Distress: Developing Better Clinical Services, Francis Creed, Peter Henningsen, Per Fink (Eds), Cambridge University Press, 2011.
13 Frances Creed and Per Fink. Presentations, Research Clinic for Functional Disorders Symposium, Aarhus University Hospital, May 15, 2014.
14 Per Fink. Syndromes of bodily distress or functional somatic syndromes - Where are we heading. Lecture on the occasion of receiving the Alison Creed award 2017. Journal of Psychosomatic Research, Volume 97, 127-130 https://doi.org/10.1016/j.jpsychores.2017.04.012
15 ICD-11 Beta Proposal Mechanism Comment facility, Dr Geoffrey Reed, January 11, 2015.
16 Proposal: Bodily distress disorder, Submitted: March 2, 2017 https://icd.who.int/dev11/proposals...lGroupId=c321880e-aa46-4328-ac19-7153c5e7a364
17 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]
18 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 - p 315–319. [PMID: 25023885]
19 Chalder, T. An introduction to "medically unexplained" persistent physical symptoms. Presentation, Department of Psychological Medicine, King’s Health Partners, 2014. [Accessed 27 February 2017] http://www.kcl.ac.uk/ioppn/depts/pm...nar-Slides/Seminar-7/Trudie-Chalder-intro.pdf
20 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]
21 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]
Suzy Chapman 2018-Apr-13 - 12:49 UTC
Ambiguity, confusion and conflation:
The authors have demonstrated elsewhere on the Beta platform [16] that the name which the S3DWG working group proposes to use for its single category replacement for most of the somatoform disorders has a history of usage in the literature and in the field interchangeably with that of the differently conceptualized, Fink et al. (2010) disorder construct.
One may observe frequent instances where the term "Bodily distress disorder" is being used when the disorder construct that is actually being discussed within the paper, editorial or presentation is the Fink et al. (2010) "Bodily distress syndrome (BDS)" diagnostic construct. In some cases, one also observes the conflations, "bodily distress syndrome or disorder" and "bodily distress syndrome/disorder."
Five examples:
"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"? [17].
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 [18].
The S3DWG's proposed term is seen, here, as "Bodily distress disorder (Fink and Schroder 2010)" in Slide #3 of a symposium presentation: An introduction to "medically unexplained" persistent physical symptoms. (Professor Trudie Chalder, Department of Psychological Medicine, King’s Health Partners, 2014) [19].
In this paper: Medium- and long-term prognostic validity of competing classification proposals for the former somatoform disorders (Schumacher et al. 2017) the authors compares prognostic validity of DSM-5 "somatic symptom disorder (SSD)" with "bodily distress disorder (BDD)" and "polysymptomatic distress disorder (PSDD)" and discuss their respective potential as alternatives to SSD for the replacement of the somatoform disorders for the forthcoming ICD-11 [20]. 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."
In this (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." [21].
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 the Fink et al (2010) disorder term "Bodily distress syndrome (BDS)", that some researchers and clinicians, including Fink et al., themselves, do not distinguish between these two terms, and that as a result of the S3DWG's perversity, researchers and researcher/practitioners are now struggling to differentiate between two divergent disorder constructs.
Why did ICD Revision not identify this flaw, anticipate the potential for confusion and conflation and address this problem earlier in the development process?
SNOMED CT International:
An (undefined) Concept: Bodily distress disorder was added to SNOMED CT International for the July 31, 2017 release. It was initially assigned under Parent: SCTID: 386585008 Functional disorder (disorder).
With no associated definition or descriptive text, it was important to establish what SNOMED International understood by the term, "Bodily distress disorder" and the origin of the request for its addition to the SNOMED CT terminology system.
SNOMED International's Head of Terminology clarified in October 2017 that Concept SCTID: 723916001 Bodily distress disorder (disorder) was added by the team working on the SNOMED CT and ICD-11 MMS mapping project and that the Concept was added as "an exact match" for the ICD-11* term, Bodily distress disorder.
Following a literature review, the terminology managers determined that the Concept would be more appropriately relocated under the SCTID: 74732009 Mental disorder (disorder) Parent, to better reflect the conceptualization and chapter placement in ICD-11. This change of Parent was effected for the January 31, 2018 Release of the International Edition.
The issue of ambiguity, confusion and conflation between these two disorder constructs was discussed with the terminology managers.
In the absence of a SNOMED CT textual definition/description for Bodily distress disorder and in the absence of the Somatic symptom disorder Synonym term to help clarify that SNOMED CT's Bodily distress disorder concept is an exact match for ICD-11's Bodily distress disorder, it was suggested that the inclusion of Bodily distress disorder's three severities of psychobehavioural responses might assist clinicians, coders and other end users in distinguishing the SNOMED CT/ICD-11 Bodily distress disorder concept from the similarly named, but differently conceptualized, Bodily distress syndrome, as defined by Fink et al (2010), which has just two severities.
This request was approved and we are advised that the three severity specifiers (Mild; Moderate; and Severe) are scheduled to be added to the July 31, 2018 release, under Children to Bodily distress disorder.
SNOMED International terminology managers had no difficultly recognising the potential for confusion and conflation; nor the implications for maintaining construct integrity that will likely result from the introduction of a new disorder category into ICD-11, which is proposed to be assigned a name historically associated with a divergent diagnostic construct/criteria set that is inclusive of a different patient population.
Our recommendation is that exclusions are required for the entities: Chronic fatigue syndrome; Benign myalgic encephalomyeltis; and Postviral fatigue syndrome under Bodily distress disorder in ICD-11 to mitigate the risk of confusion and conflation with Bodily distress syndrome, a diagnostic construct intended to subsume these ICD entities.
Will ICD Revision please give this attention before the draft is finalized in May?
Will ICD Revision also consider the 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, coders and commissioners; the statistical implications for data reporting and analysis, and most importantly, the implications for patients?
*For SNOMED CT UK Edition, Concept SCTID: 723916001 Bodily distress disorder is cross mapped in the SNOMED CT to ICD-10 mapping classification to ICD-10 F45.9 Somatoform disorder, unspecified.
References:
1 Complex Hierarchical Changes Proposal, Other disorders of the nervous system. Submitted: March 27, 2017; Typographical edit: March 31, 2017 https://icd.who.int/dev11/proposals...lGroupId=4b26ab6a-393f-4a39-9051-4ac1d4b1a55a
2 Content Enhancement Proposal, Bodily distress disorder. Submitted: December 30, 2014 https://icd.who.int/dev11/proposals...lGroupId=16b0ba12-3e6d-4b6f-8b0c-3b6cf7094c2e
3 ICD-11 MMS, Postviral fatigue syndrome https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/569175314
4 Global Clinical Practice Network, Clinical Descriptions and Diagnostic Guidelines for ICD-11 Mental and Behavioural Disorders
https://gcp.network/en/icd-11-guidelines
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. DSM-5 Somatic Symptom Disorder. J Nerv Ment Dis. 2013 Jun;201(6):530-1. [PMID: 23719325]
7 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]
8 Frances A. The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill. BMJ. 2013 Mar 18;346:f1580. [PMID: 23511949]
9 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]
10 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]
11 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]
12 Medically Unexplained Symptoms, Somatisation and Bodily Distress: Developing Better Clinical Services, Francis Creed, Peter Henningsen, Per Fink (Eds), Cambridge University Press, 2011.
13 Frances Creed and Per Fink. Presentations, Research Clinic for Functional Disorders Symposium, Aarhus University Hospital, May 15, 2014.
14 Per Fink. Syndromes of bodily distress or functional somatic syndromes - Where are we heading. Lecture on the occasion of receiving the Alison Creed award 2017. Journal of Psychosomatic Research, Volume 97, 127-130 https://doi.org/10.1016/j.jpsychores.2017.04.012
15 ICD-11 Beta Proposal Mechanism Comment facility, Dr Geoffrey Reed, January 11, 2015.
16 Proposal: Bodily distress disorder, Submitted: March 2, 2017 https://icd.who.int/dev11/proposals...lGroupId=c321880e-aa46-4328-ac19-7153c5e7a364
17 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]
18 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 - p 315–319. [PMID: 25023885]
19 Chalder, T. An introduction to "medically unexplained" persistent physical symptoms. Presentation, Department of Psychological Medicine, King’s Health Partners, 2014. [Accessed 27 February 2017] http://www.kcl.ac.uk/ioppn/depts/pm...nar-Slides/Seminar-7/Trudie-Chalder-intro.pdf
20 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]
21 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]
Suzy Chapman 2018-Apr-13 - 12:49 UTC
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@Dx Revision Watch, sorry I am bit confused on the above. Are you saying SNOMED has accepted including the term CFS under the parent title Disorder of nervous system, not that CFS will be a stand alone Parent? Many thanks.
Dx Revision Watch
Senior Member (Voting Rights)
In ICD, disorder and disease terms are arranged in hierarchies under parent terms, within chapters according to the body site or body system involved or according to aetiology.
In SNOMED CT, disorders and disease terms aren't arranged in chapters but are assigned Parents. A disorder term (or Concept) may have just one or two Parents or several Parents assigned to it, arranged hierarchically, and possibly with "Children" terms underneath it.
Prior to July 2015, CFS and its Synonym terms were assigned two Parents: the Multisystem disorder Parent; and the Mental disorder Parent.
After July 2015, the Mental disorder Parent was retired for CFS, leaving CFS under the Multisystem disorder Parent.
At the same time, a change was made for Postviral fatigue syndrome. Postviral fatigue syndrome had been located under "Children" to CFS, but it was moved to its own code.
In January, this year, SNOMED International decided that the Multisystem disorder Parent was not useful and insufficiently specific.
90 Concept terms sat under the Multisystem disorder Parent.
When the Multisystem disorder Parent was retired (or "Inactivated" as they call it), many of these 90 terms were relocated under more specific Parents, or retired because they were historical terms, or duplicates, or considered ambiguous terms.
The removal of the Multisystem disorder Parent left CFS with no Body system Parent. Its only Parents were
Parents
Clinical finding (finding)
- Disease (disorder)
So a request was submitted for adding the Disorder of nervous system Parent and this has been provisionally approved. It needs to go through a final process. But by May or early June, we should have confirmation.
If there are no hitches, for the July release, CFS should display like this in SNOMED CT:
Parents
Disorder by body site (disorder)
Disorder of body system (disorder)
Disorder of nervous system (disorder)
Chronic fatigue syndrome (disorder)
SCTID: 52702003
52702003 | Chronic fatigue syndrome (disorder) |
Iceland disease
Benign myalgic encephalomyelitis
Chronic fatigue syndrome
Myalgic encephalomyelitis syndrome
ME - Myalgic encephalomyelitis
Myalgic encephalomyelitis
CFS - Chronic fatigue syndrome
Chronic fatigue syndrome (disorder)
Children
[There are no Children under CFS in the International Edition. But the UK Edition has three severities, which are specific to the UK Edition: Mild CFS; Moderate CFS; Severe CFS]
Countries who manage their own editions under license can apply to retain terms that would otherwise be retired or apply to add new terms just for their own edition. For example, the Netherlands Edition has retained Neurasthenia (as "neurasthenie" in Dutch) under Synonym terms to CFS, although Neurasthenia was retired from the International Edition years ago.
For SNOMED CT Concept terms (ie terms that have been assigned an SCTID Identifier code), variations to the core International Edition database of terms are identified in the country editions by a symbol of the country's flag.
For the International Edition and the country Editions, CFS and its Synonym terms is mapped to ICD-10 G93.3 in the SNOMED CT to ICD-10 cross mapping tables.
Caveats:
1 This request has been provisionally approved but not yet finalized. I will update once it has been finalized.
2 The various country editions are on a staggered schedule for the release of their twice yearly updates. So the twice yearly changes to the International Edition (and there are thousands of changes and additions for each new release) are incorporated into country editions during different months. The UK edition absorbs changes and additions from the International Edition about 3 months after the International release has been published. So this revision (assuming it progresses without hitches) won't appear in the UK edition until the October release.
If anything is still unclear, let me know and I'll try and clarify.
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Dx Revision Watch
Senior Member (Voting Rights)
By the way, the SNOMED CT terminology system includes not just disorder and disease terms but provides codes for core general terminology for use in electronic health records, for example: clinical findings; symptoms; diagnoses; procedures; body structures; pharmaceuticals; devices etc.
Each clinical term or phrase is called a "Concept" and assigned a unique code.
The ME Association has been assigned a SNOMED CT code:
Parents
≡ Finding related to care and support circumstances and networks (finding)
Myalgic Encephalopathy Association member (finding)
SCTID: 161107000
161107000 | Myalgic Encephalopathy Association member (finding) |
M.E.Association member
Myalgic Encephalopathy Association member (finding)
Myalgic Encephalopathy Association member
Each clinical term or phrase is called a "Concept" and assigned a unique code.
The ME Association has been assigned a SNOMED CT code:
Parents
≡ Finding related to care and support circumstances and networks (finding)
Finding of self-help group membership (finding)
Myalgic Encephalopathy Association member (finding)
SCTID: 161107000
161107000 | Myalgic Encephalopathy Association member (finding) |
M.E.Association member
Myalgic Encephalopathy Association member (finding)
Myalgic Encephalopathy Association member
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Thank you @Dx Revision Watch for your clear explanation, all clear now. Also thank you for your, hopefully, successful proposal to put CFS under nervous system disorder parent after it had been left without one when the Multi System Disorder parent was retired. I am also pleased to hear that since 2015 SNO MED no longer placed CFS under the Mental Disorder parent as well.
Sly Saint
Senior Member (Voting Rights)
hi, and thanks for all the info.
Just wondering; do you know, when the new SNOMED is in place how will patients be 'divided' into the three categories? (under the old readcode I currently just have Chronic Fatigue Syndrome).
Tagging @Russell Fleming as I'm sure I can't be the only one who wants to know.
Dx Revision Watch
Senior Member (Voting Rights)
No, I'm afraid I don't know.
The facility for coding for one of three severities has been included in the UK Extension for some years.
It may be that the severity specifiers will be optional.
I don't have the history of when the three severity specifiers were added or who had submitted the original proposal for consideration of their inclusion. But I did access a page a few weeks ago where you could look up archived proposals. If I can find that, I'll see whether there is any information recorded about the original proposal to include three specifiers and what the rationale had been.
Dx Revision Watch
Senior Member (Voting Rights)
@Sly Saint
If you would like an answer to your question, what I could do is this:
The discussions with SNOMED International, last year, to obtain clarifications around the addition of BDD which resulted in some changes; and the submission, early this year, for a change of Parent for CFS were channeled through a group.
The BDD changes were effected directly with SNOMED CT International. The submission for addition of a new Parent for CFS and accompanying rationale was required to be entered into the SNOMED CT International Request for Changes process, via the managers for the UK Edition.
Once the July release has been finalized and published, I could contact the UK managers and ask: In what year the three severity specifiers were added; which agency or other party had requested consideration of their addition under Children to CFS; and now that SNOMED CT is mandated for use in primary care, whether and how the 3 severities will be required to be used and how clinicians will determine which severity should be specified.
If you would like an answer to your question, what I could do is this:
The discussions with SNOMED International, last year, to obtain clarifications around the addition of BDD which resulted in some changes; and the submission, early this year, for a change of Parent for CFS were channeled through a group.
The BDD changes were effected directly with SNOMED CT International. The submission for addition of a new Parent for CFS and accompanying rationale was required to be entered into the SNOMED CT International Request for Changes process, via the managers for the UK Edition.
Once the July release has been finalized and published, I could contact the UK managers and ask: In what year the three severity specifiers were added; which agency or other party had requested consideration of their addition under Children to CFS; and now that SNOMED CT is mandated for use in primary care, whether and how the 3 severities will be required to be used and how clinicians will determine which severity should be specified.
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Sly Saint
Senior Member (Voting Rights)
That would be great but don't want you to give you more to do;
shouldn't this be something for the ME charities to look into?
Whenever the 3 severities codes were introduced you would think there would be a 'standard' means of deciding which one a patient is put in; and if they aren't used then this begs the question why were they requested in the first place(?)
But it would be interesting to know when they were first proposed (to see if it aligns with what else was going on at the time eg PACE).
Dx Revision Watch
Senior Member (Voting Rights)
It would take me less than 7 minutes to request this information. By the time I'd set out for one of the charities, what Qs need to be asked and to which department they should be addressed - I may as well draft it myself.
If the answers require a follow up, I can approach one of the orgs with the information obtained and suggest they follow up.