IAPT requests addition of DSM-5's Somatic symptom disorder (SSD) to SNOMED CT for use in Data Set v2.0 to replace "MUS - not otherwise specified"

Who knows? This is after all the man who claimed back in 1993, that Neurasthenia would serve very well for ME, CFS. He does seem to get very mardy around classification systems.

 

Wessely presented at the 2006 Bejing WHO/APA DSM-5 Symposium but was not a UK member of the DSM-5 SSD work group - that was Michael Sharpe and Francis Creed.

Wessely did sit on an ICD-11 Topic Advisory Group for PTSD.

 

There had initially been an MOU (Memorandum of Understanding) between APA and WHO that as far as possible, both systems would strive for harmonisation between their disorder definitions for the MH chapter. One of the DSM-5 Task Force chairs (Steven Hyman) had also been installed as chair of the ICD-11 MH chapter Topic Advisory Group to oversee the "harmonisation" project.

Then around 2008, there was conflict between APA Publishing and WHO over WHO licensing and the copyright for the DSM-5 criteria sets and the MOU broke down. After that, the ICD-11 MH disorder descriptions started to diverge from those in the DSM-5 proposals.

 

Extract from archived content on my site:

From 2008:

"There is already a degree of correspondence between DSM-IV categories and Chapter V of ICD-10. For the next editions, the APA and the WHO have committed as far as possible:

"To facilitate the achievement of the highest possible extent of uniformity and harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria."

with the objective that:

"The WHO and APA should make all attempts to ensure that in their core versions, the category names, glossary descriptions and criteria are identical for ICD and DSM."

The WHO acknowledges that there may be areas where congruency may not be achievable."
​

And then it all went pear shaped.

 

I find it hard to follow all the details @Dx Revision Watch, but is it possible that they are trying to circumvent possible restrictions that might be imposed by ICD11?

You & @Medfeb have done so much work to keep their feet on the ground with the new coding, could this be their way of trying to sidestep some of the gains you've fought so hard for?

 

https://www.who.int/mental_health/evidence/icd_advisory_group_december_08_summary.pdf

December 2008:

Summary Report of the 4th Meeting of the International Advisory Group for the Revision of the ICD-10 Mental and Behavioural Disorders

World Health Organization Department of Mental Health and Substance Abuse Geneva, Switzerland

Meeting of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders 1 - 2 December 2008, Geneva, Switzerland

Meeting Summary Report

(...)

9. ICD/DSM Harmonization Group Presenters: Dr. Darrel Regier and Dr. David Kupfer (APA); Dr. Benedetto Saraceno and Dr. Shekhar Saxena (WHO).

(...)

Dr. Saraceno, speaking from the WHO side of the harmonization issue, raised a number of concerns related to harmonization. As Director of the WHO Department of Mental Health and Substance Abuse, he routinely receives communications from global leaders in the field. In recent months, the topic of the ICD revision has been prominent, and the issue of harmonization with the DSM has been raised frequently. The importance of harmonization is widely endorsed, but many have emphasized that the two processes should be parallel and independent and that WHO’s development of ICD should not be substantially influenced by the DSM process. Some have specifically criticized APA’s and WHO’s attendance at one another’s revision meetings, pointing out that other classification groups—Chinese, Cuban, etc.—are not treated equivalently. There has also been criticism of cross-membership on DSM and ICD working groups. These issues regarding the interaction of the ICD and DSM processes will need to take into account, both in terms of their substance and in terms of perception, even in the overall context of harmonization as a general goal.

Dr. Saxena, also speaking on behalf of WHO, acknowledged a history of successful collaboration between WHO and APA, including the recent conferences, but also noted significant challenges. The mandates, organizational requirements, and interests of WHO and APA do not overlap entirely and cannot be put aside. The constitutional responsibility of WHO for ICD is a unique and serious one. As the ICD process goes forward, there will be a demand for increasing specificity, which will create more difficulties if uniformity is seen as the most important goal.

There are also issues related to copyright and publication revenues. There was a Memorandum of Understanding between APA and WHO in 1990 regarding ICD-10 and DSM-IV, which seems to have worked well. However, changes in organizational priorities, global health care, and technology suggest that it may not be a simple matter to achieve a similarly workable agreement in the current context. Commercial issues may become more prominent the greater the degree of harmonization achieved.

 

The date of that memorandum struck me as interesting. There is a Wessely paper which I have been looking for but unable to obtain.

Wessely S (1990)The natural history of chronic fatigue and myalgia syndromes. In D Goldberg. N Sartorius et al (eds) Psychological disorders in General Medical Settings pp82-97 Hans Huber, Bern

One wonders what was going on here. I presume that Goldberg was influential in the WHO and involved with the classification. It seems a strange title in which to publish your paper if you don't believe the conditions to be psychological.

What was the extent of collaboration?

There has clearly been much more going on than most were aware of.

 

In the context of this request for addition of the SSD term to SNOMED CT UK Edition to replace "MUS - not otherwise specified" for the IAPT Data Sets v2.0, due to be released in April, I have not been able to find any references to IAPT's consideration of the forthcoming ICD-11 and the potential for considering BDD rather than the DSM-5's SSD.

The RCPsych/RCGP Working Group on Medically Unexplained Symptoms meeting Minutes that I have date from late 2013, though there were meetings before the November 2013 meeting. None of these meetings up to 2015 mention ICD-11 or consideration of BDD.



I wrote the following to a contact, yesterday:

As you know, DSM-5 was released in May 2013. The DSM-5 manual texts and code sets were finalised in December 2012 or by the beginning of January 2013. There had been three DSM-5 public review exercises and a good deal of media interest and professional interest in the new edition. So by the time DSM-5 was published, in May 2013, professional stakeholders would have had access to the draft texts and criteria sets and some of them may have commented in the review process and some would likely have seen the monographs published ahead of DSM-5, which discussed various disorders.

So it's not surprising that when the Chew-Graham meetings were being held, that some of the participants would already be familiar with the new DSM-5 SSD.

In contrast, ICD-11 development was very delayed. BDD was first entered into the ICD-11 Alpha Draft in February 2012. The Beta Draft was launched in May 2012, followed by the publicly accessible Proposal Mechanism.

The first progress report from the ICD-11 S3DWG sub working group for BDD wasn't published until December 2012. After that, there was only one further progress report published before the field trial evaluation reports.

So ICD-11's BDD would not have had the same profile level in 2012 that DSM-5's SSD had already achieved. So when the RCPsych/RCGP Working Group floated the idea of naming the group the SSD (DSM 5) group, if they were aware of BDD, they may have thought that the finalised ICD-11 and eventual adoption of ICD-11 by NHS Digital was so far into the future as to be hardly worthy of scrutiny.

However, I think by 2015, one might have expected the group to have been aware that ICD-11 appeared to be going forward with its BDD construct. But if they were, it does not appear in the Minutes.

As far as IAPT goes, their request for adding DSM-5's SSD term to SNOMED CT UK Edition was submitted on 13 November 2017 and had presumably been discussed some time before that date.

At that point, all proposals for exclusions under BDD had been rejected. I didn't submit my new proposal until December 01, 2019 which post dates their request for addition of SSD to SNOMED CT. My proposal was approved and implemented on January 17, 2020.

So I don't see that their request was triggered by the approval of my proposal for exclusions under BDD.

As to what extent the work that has been done towards securing beneficial changes to ICD-11 may have influenced their interest in using SSD rather than wait for ICD-11's BDD - I just don't know.

If I do contact NHS Digital in respect of their request, one of the questions I shall be asking is: did IAPT consider BDD as well as SSD, and if so, what is their rationale for not waiting until ICD-11's BDD can be used before deprecating the term "MUS - NOS"; and if they have not considered ICD-11's BDD - why not?

I am aware that for some disorders like depression they appear to favour DSM criteria and use DSM-5 evidence base and make use of DSM-5 checklists for outcome measures

They appear to use a DSM-5 PTSD Checklist for Outcome measure:

https://rcpsych.ac.uk/docs/default-...pt-manual-appendices-helpful-resources-v2.pdf

PTSD Checklist for DSM-5 (PCL-5)

4.1.7 PTSD Checklist for DSM-5 (PCL-5)


They also appear to use DSM-5 outcome measures for Body dysmorphic disorder

https://nice.org.uk/Media/Default/A...-body-dysmorphic-disorder-for-publication.pdf


But in the case of looking for a replacement term for "MUS - NOS" they have actually proposed adopting a disorder term that was developed by the APA, has a criteria set and guideline texts that are the intellectual property of the APA's publishing arm, which come from a manual that is not much used in the UK, and which is not one of the two classification and terminology systems mandated for use in the UK - and that seems a big leap. Especially given that ICD-11 will at some point be implemented in NHS England.

[Edited to fix clunky para.]

 

Goldberg and Sartorius go back a long way and have collaborated on other projects. He may have been involved in the development of ICD-10 - I don't know. As you see, he was involved with ICD-11 MH Topic Advisory Group meetings but was not a member of TAG MH. But there were a number of TAG MH sub committees that he may have been a member of.

But Goldberg had led the WHO external work group that developed the WHO's ICD-10 PHC (1996) for 24 primary care mental disorders. The IoP is a WHO-FIC Collaborating Centre. He now chairs the group that has developed its replacement.

 

Goldberg was also involved with the IoP committee that adapted a UK version of the WHO's ICD-10 PHC for the UK publication:

WHO guide to Mental Health in Primary Care, 2002

which I've covered in other threads (the book for which errata notes had to be inserted after they assigned F45 codes to CFS, ME).

It's common knowledge that Goldberg has been firmly embedded in WHO, Geneva for many, many years.

He's now in his mid 80s. Surely time to retire?

 

Goldberg (IoP, WHO-FIC Collaborating Centre) was also a UK PI for the ICD-10 Mental disorder field trials.

 

https://digital.nhs.uk/binaries/con...eholder_events_november_2019-final-slides.pdf

IAPT Stakeholder Events, November 2019 - Presentation Slides

Slide #18:

 

Well, I've drafted a letter for NHS Digital's SNOMED CT UK Edition leads and it will be sent on Monday morning.

In the light of my Recommendations, I have decided to Cc in the International Edition's terminology lead who had handled the requests made via Forward-ME, in 2017, for changes to the SNOMED CT Bodily distress disorder Concept.

 

Ah, I see the newest rebranding exercise is under way. Because that is exactly the problem with this hollow mass of mediocrity: the name.

Brand new packacking! Now with 30% more. More what, you ask? Who cares? It's more!

 

It's not been approved yet. The request was submitted on 13 November 2019.

 

Covering email and "stakeholder feedback" in PDF format in response to Request 29847 sent this morning to the following:

For the attention of: Elaine Wooler; Cc: Sheree Hemingway; Lynn Bracewell, NHS Digital Terminology and classifications;

Cc: Dr James Case; Jane Millar, SNOMED CT International

Re: SNOMED CT UK Edition Submission Portal Request 29847, submitted: 13.11.19:
To add a new concept that is the equivalent of Somatic Symptom Disorder in DSM-5

February 22, 2020

 

See Slide #71 from the November 2019 presentation, below.

Source: https://digital.nhs.uk/binaries/con...eholder_events_november_2019-final-slides.pdf

IAPT Stakeholder Events, November 2019 - Presentation Slides

Note: The "MUS - not otherwise specified" from the IAPT v1.5 + LTC/MUS Pilot was at this point proposed to map to F45.9 Somatoform disorder, unspecified for the new IAPT v2.0 Data Set.

Below the Table it says:

"We will work with IT suppliers to change terminology from MUS to….
…….Persistent Physical Symptoms"​

However, as we know, on November 11, a phone discussion had taken place between "NHS England IAPT senior team" and personnel from NHS Digital (one of whom was Sheree Hemingway and the other unidentified, but one assumes the submitter of the Request) to discuss adding a Concept term to SNOMED CT UK Edition for DSM-5's Somatic symptom disorder so that a SNOMED CT code and ICD-10 map would be available to IAPT. The Request rationale text states:

"Sheree Hemingway and myself attended a call with the NHS England IAPT senior team on 11/11/19 regarding the mapping of a cohort of patients who require psychological therapy in relation to persistent physical symptoms. This cohort was previously categorised in IAPT as 'Medically unexplained symptoms - other' but this is no longer appropriate.

"The IAPT National Clinical Advisor highlighted that Somatic Symptom Disorder (300.82 I think) in DSM-5 is the appropriate definition for this cohort. However, a SNOMED or ICD-10 code was required for the IAPT Data Set submission.
It was agreed that this DSM-5 code would be mapped to SNOMED as a new 'Somatic Symptom Disorder' concept if possible.
I am not sure how this would map up in the SNOMED hierarchy and would be grateful for your steer."​

As we know, the mapping table in Slide #71 was updated in November/December to this proposal:



Apart from the slide below, from a November presentation, there is nothing that I've come across on the IAPT Data Set v2.0 that suggests that if IAPT were successful with this request for addition of a Concept term for DSM-5 Somatic symptom disorder, they were planning to use the proposed SNOMED CT UK Somatic symptom disorder Concept code (and/or its ICD-10 map code) for the purposes of mapping codes but intend to replace the terminology "MUS - not otherwise specified" in the documentation with "Persistent Physical Symptoms" (for which there is no SNOMED CT Concept code or ICD-10 code).

But I can't rule out that the intention is to use "Persistent Physical Symptoms" as the replacement terminology for "MUS - not otherwise specified" in documentation but map it to a potential new SNOMED CT Concept code for Somatic symptom disorder for the purposes of generating a SNOMED CT code and a map to ICD-10 for use in the new Data Set.


Slide #71

https://digital.nhs.uk/binaries/con...eholder_events_november_2019-final-slides.pdf

IAPT Stakeholder Events, November 2019 - Presentation Slides

 

Moderator note: This post has been moved from a thread about an article that has been deleted.
____________________


EDITED: I've heavily edited this post for better context now it's been moved from its original location:

This thread is a spin off thread from this thread:

Treating medically unexplained symptoms via improving access to psychological therapy (IAPT): major limitations identified, 2020, Geraghty and Scott

https://www.s4me.info/threads/treat...entified-2020-geraghty-and-scott.13501/page-3



On April 01, 2020, IAPT is scheduled to roll-out its new IAPT Data Set version 2.0, which will replace IAPT Data Set v1.5.

This spin off thread contains links for the IAPT v2.0 Data Set web pages, the October 2019 Stakeholder Consultation pages, documentation, spreadsheets, stakeholder presentation etc.

The stakeholder consultation in October 2019 ran for a month. Following the consultation, some revisions to the draft Data Set v2.0 and its associated documentation were posted on the Consultation pages.

One of the proposed revisions made after the Consultation was for:

"[An] amendment to the mapping for MUS-Other and replacement of MUS terminology within the document."

This relates to an amendment to the earlier proposed mapping for v2.0, as it had appeared in the table immediately, below:



which was revised in November/December to:





Note the new ICD-10 map codes for IBS; and CFS/ME (ie K58 and G93.3 - not F45.x codes).

"MUS - not otherwise specified" is proposed to be mapped to DSM-5's Somatic symptom disorder, if IAPT's request for a new Concept code for Somatic symptom disorder to be added to the UK Edition of SNOMED CT is approved.

The request had been discussed in a call between "IAPT senior team" and NHS Digital, on November 11. Request 29847 was submitted on November 13.

According to the details for Request 29847, the term "Medically unexplained symptoms" is now considered by IAPT to not be "appropriate" terminology and that DSM-5's Somatic symptom disorder "is the appropriate definition for this cohort".

The thread contains a copy of the Request 29847 for addition of Somatic symptom disorder to the SNOMED CT UK Edition, which is marked as "Urgent".

IAPT want to fast track this request for a new Concept code in order to have it implemented in time for inclusion in the forthcoming Data Set v2.0 and to revise the terminology in its associated documentation. The status of the request is designated: "Provisionally approved".

(IAPT is now able to use ICD-10 codes or SNOMED CT UK Edition terminology codes in its data sets and for Data Set v2.0, will also be making use of many SNOMED CT Concept terms for non medical disorder clinical terminology.)


I don't want to see DSM-5's Somatic symptom disorder being embedded into NHS England via a backdoor marked "IAPT".

The DSM-5 isn't used very much in the UK, and primary care and secondary care specialities will be unfamiliar with the DSM-5 and with the new Somatic symptom disorder diagnostic construct.

The classification and terminology systems that are mandatory for use in NHS England are ICD-10 Version: 2016 and SNOMED CT UK Edition.

Although the WHO has approved the addition of exclusions for PVFS; ME; and CFS under its ICD-11 Bodily distress disorder category, there are no exclusions for these terms for the DSM-5's Somatic symptom disorder.

On February 23, I wrote to NHS Digital terminology leads and Ccd in two SNOMED International's terminology leads, to hopefully throw a spanner in the works by asking, inter alia:

if the DSM-5's SSD construct is considered by IAPT leads as the "appropriate definition for this [MUS - not otherwise specified] cohort", why have they not considered the similarly conceptualised, ICD-11 Bodily distress disorder diagnostic construct - given that DSM-5 is little used in the UK; given that ICD is the mandatory classification system and given that ICD-11 will eventually be adopted by NHS England?

The ICD-11 BDD term already has a Concept code in SNOMED CT that has been mapped to ICD-10 F45.9 Somatoform disorder, unspecified, which is the same code IAPT had planned to use back in November, prior to the amendment to the proposed mapping, for "MUS - not otherwise specified".

I have recommended at the end of my feedback: "No requests for adding DSM-5 Somatic symptom disorder to SNOMED CT UK Edition should be approved or implemented at this stage. Advice should be sought from the SNOMED CT International Edition terminology team."

Whether the information and points raised within my submission will be enough to stop the request from progressing any further, or delay a decision beyond April in order that the request can be discussed with SNOMED International's terminology leads and with the WHO, I don't know.


There is a very long slide presentation* for professional stakeholders which states in Slide #71 the intention (prior to the November decision to request a SNOMED CT code for Somatic symptom disorder) to replace "MUS" terminology within documentation with the term, "Persistent Physical Symptoms".

It is currently unclear whether the intention remains:

a) to revise the terminology in the documentation to "Persistent Physical Symptoms" and use DSM-5's Somatic symptom disorder as the Concept code for the map (if the request for addition of SSD to SNOMED CT UK Edition is approved); or

b) to use "Somatic symptom disorder" for both the revised terminology in the documentation and the Concept code for the map (if the request for addition of SSD to SNOMED CT UK Edition is approved).


*IAPT Stakeholder Events, November 2019 - Presentation Slides

https://digital.nhs.uk/binaries/con...eholder_events_november_2019-final-slides.pdf

 

Elaine Wooler (Principal Terminology Specialist, Terminology and Classifications Delivery Service NHS Digital) has confirmed receipt of my feedback and said that she will investigate further which will need discussion with the IAPT programme.

I will keep you apprised of any developments over the coming weeks.

 

Requests for changes to SNOMED CT UK Edition go through these stages:

Submitted
In Progress
Clarification requested
Clarification received
Request provisionally accepted (current status of Request 29847)
Closed - Complete
Closed - Exists
Closed - Declined
Referred to SNOMED International
Withdrawn

The status of requests is visible to guests to the platform. (Registration for submission of requests is for NHS organisation personnel.)

Since the beginning of February, around 44 requests have been submitted for amendments, changes or additions to SNOMED CT Concept terms, across the spectrum of health terminology that SNOMED CT supports. In the Priority field, requests are identified as Minor; Important; Urgent.