What's in a name? Change to Ramsays?

So ICD-11 would not consider any proposed "Ramsay disease" either as an ICD Concept Title (the category to which the code is assigned) or as a specified Inclusion term to an otherwise named Concept Title.

And given SNOMED International's Editorial Guide for SNOMED CT and the MOU between SNOMED International and WHO to work towards alignment with, and incorporation of new ICD-11 terms, it is unlikely that SNOMED International would accept a potential "Ramsay disease" as a Fully Specified Name (FSN)*

*A term unique among active descriptions in SNOMED CT that names the meaning of a concept code in a manner that is intended to be unambiguous and stable across multiple contexts.

 

Another consideration is that ICD-11 will be translated.

There are at least 42 translations for ICD-10 and eponyms do not lend themselves to translation. Name of "Ramsay" resonates in UK, US and some other countries, but would mean little to clinicians, for example, in Mongolia.

 

I just saw somebody point out on Twitter that "live" backwards spells "evil"!

https://twitter.com/user/status/1100484303492927493

 

The argument against naming diseases after people is based on stigma, whether the name leads to confusion about etiology etc. Those arguments don't necessarily apply to the argument that ME should be renamed as Ramsay disease.

Secondly, if the names proposed by various health authorities actually CAUSE the problems they claim are avoided by not naming diseases after people, we as patients have the right to point this out and ask for a better deal.

The other sources of confusion are not hard to solve eg:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5764578/

So what? It's a person's name and they will recognise it as such. It's no different to "Kawasaki Disease" etc.

 

I refer you back to my previous posts on WHO's and SNOMED CT's editorial policies on the use of eponyms in classification and electronic terminology systems.


With regard to the term, "Kawaski Disease":

For ICD-11, the Title or Concept term is:

4A44.5 Mucocutaneous lymph node syndrome

with:

Kawasaki syndrome
Kawasaki disease

under Synonyms and Index terms.


For ICD-10 it is coded as:

M30.3 Mucocutaneous lymph node syndrome [Kawasaki]

 

Time might be better spent discussing the CDC's September 2018 proposal to include the SEID term in ICD-10-CM:

https://www.s4me.info/threads/usa-n...icd-10-cm-adding-seid.5929/page-9#post-143616

USA - NCHS/CDC Proposal for ICD-10-CM - adding SEID

 

Agree completely, the final name will only appear once we work out what this illness actually is.

All the name arguments are just a pointless distraction in my opinion.

 

I would like the name to reflect the mechanism of PEM. This is the core distinction from other disorders. We need to r/o comorbidities such as POTS, MCAS/D, EDS etc.

 

I would support SEID, ME, or a new placeholder name.

I do not support PVFS, CFS, or anything with "fatigue" in it.

ME/CFS has served its purpose of notifying HHS of our displeasure with CFS, and has now outlived its usefulness IMO.

 

Dorsal root ganglionitis patients are proclaimed as ME sufferers. They clearly have an -itis, and itis diagnosis is generally viewed as indicative of inflammation. They are too ill to do a SEID test. They are some of the most ill among us and have been used to demonstrate the physical reality of ME. They could be ejected from ME on the basis of having inflammation, if there is none in ME, or on being successfully alternatively diagnosed, albeit after death.

DRG is not myalgic encephalomyelitis, but neither is SEID myalgic encephalomyelitis, though it can be asserted to be "ME" as can DRG. Testing of DRG might show they have SEID too. Maybe this has been done in mild cases.

We need consistency of approach before we can get consistency of language and we need to be very careful about whom we might end up excluding from "ME"- some could be very needy and ill indeed.

We have to mix scientific talk with clinically useful talk with advocacy talk, are a heterogenous community or numerous communities and it is a difficult balancing act.

 

I'm guessing you mean some sort of exercise test: exercise tests aren't required for a diagnosis of SEID.

 

Good point, but people's diagnoses have been questioned by other sufferers on the grounds that they have not been thru 2 day exercise and/or 2 day anaerobic threshold tests. It happens.

I think my point stands that DRG, at least at the level which has led to death, precludes current SEID tests (as far as I know), even if tests are not needed for diagnosis. Since there is a lobby for making 2 day tests the biomarker and since the call for name change has been associated with this research, I think my point is valid.

 

I think you missed my point. Yes they have a policy. I'm saying that policy does not meet patient needs in all cases. I'm saying we shouldn't be trapped in bureaucratic hell because they didn't bother to ask us before making a policy.

We don't have a name like SEID [Ramsay], we have an even worse name...

 

True.

Another option would be making a vague name based on some pathology we think is probably part of the picture (such as immune problems) even if it's not known to be causative.

They're not particularly fussed about accurate names or names about the ultimate causation in better recognized diseases, so I don't see why they should be in poorly-researched diseases. It's a double standard.

 

On looking at historical cases it was recently brought home to me how the name is less important than the criteria. I intended to write about it elsewhere, when the head permits.

There is listed, in the cannon of epidemic outbreaks, one in a Southampton school in 1979 reported in 1980. The authors called it ME, and Parish seems to have accepted that in creating his list. The case is very odd. The authors record it as a matter of altered medical perspectives, based on a few probable viral cases and increased anxiety in a suggestible population. The symptoms appear similar to those in the GOSH outbreak reported by Dillon, save in one characteristic. All bar one of the patients were reported as recovered within two months. The exception was later found to have a known treatable condition.

None of the patients appear to have had long term sequelae.

This appears to show the confusion which arose around the name. This may not have been entirely accidental. The writing makes clear that there was an agenda to rebut, if not refute, the conclusions of the 1978 symposium. It seems that by that stage the name ME was freely ascribed to any potential unknown viral epidemic, of whatever duration.

It doesn't really matter what the name is, so long as no one knows how it should be applied.

 

The boring stuff:

Once endorsed, ICD-11 enters an annual and 5 yearly updating and maintenance cycle. (At some future point, an ICD-12 may be considered necessary depending on the extent to which the ICD-11 structure needs to be reorganized.)

https://icd.who.int/icd11refguide/e...nce|annex-icd11-updating-and-maintenance|c3-8

ICD-11 Reference Guide:

3.8 Annex: ICD-11 Updating and Maintenance

"The updating is carried out at different levels with different frequencies. That will keep stability for mortality and allow quicker updates for morbidity use.

Updates that impact on international reporting (the 4 and 5-digit structure of the stem codes) will be published every five years.

Updates at a more detailed level can be published at annual rates and pending the needs of clinical modifications also twice a year.

Additions to the index can be done on an ongoing basis."​

--------------------

Changing a Concept Title or Preferred Term (title) is identified as a Major change in terms of potential impact on MMS-collected data. Changing a primary parent also constitutes a Major change. Major changes can be considered for the 5 yearly update cycle.

Changing a secondary parent could be incorporated on an annual update as this would not affect the code structure. Adding a Synonym or Index term could also be done via an annual update.

The existing G93.3 legacy terms would be required to remain in the classification as Specified inclusions, Synonyms or Index terms to maintain backward compatibility with ICD-10 and with the clinical modifications of ICD-10, which will remain in use for some years to come, and for the purposes of data aggregation.


Unlike the US's ICD-10-CM, there won't be a mandatory implementation date by which ICD-11 must be adopted (though there is an expectation by the WHO that member states will start preparing to begin using ICD-11 in some capacity).

Member states won't transition en masse. Implementation will be patchy and global adoption is going to take years.

Member states will be able to start using the ICD-11 codes for reporting data from January 01, 2022. But no member states are likely to have been able to prepare and implement ICD-11 by that date.

Member states will need several years in which to evaluate, launch consultations*, and prepare their health systems for migration from ICD-10 to the new edition. They will need to have completed translations and to have trained up coders and clinicians (in those countries where clinicians do the coding) in the use of this more complex and much expanded version.

*The Australian Institute of Health and Welfare (AIHW) is conducting a review of ICD-11 to inform and assist decision-makers about ICD-11 and its potential for adoption in Australia and has launched a pre-consultation. The UK's NHS Digital has yet to publish a tentative timeline for potential adoption.

While member states are transitioning from ICD-10 to ICD-11, data will be collected using both the ICD-10 and ICD-11 code sets. There are already mapping tables for ICD-10 to ICD-11, and a backward map. SNOMED-CT to ICD-11 mapping is also under development.

Once endorsed, the update and revision committees will continue to receive proposals for changes submitted by member states, and from stakeholders via the Proposal Mechanism, which will remain online.

Proposals can be submitted at any time, so a proposal that would come under a "Major" change could be submitted and approved between 5 yearly updates, but its implementation would be delayed until batch incorporation at the next 5 year update.

It's currently unclear whether the first annual update to the MMS will be January 01, 2020, or in a subsequent year. But if January 2020, for a Concept Title term name change, you could be looking at at least 2024/25 for potential incorporation.


Note also:

3.8.7 Changes that cannot be done during the normal updating process

Changes that create new structures that conflict with the existing structure or coding of a current revision can be carried out only within a new revision of ICD and they include:

1. Changing an existing code of a category
   
   
2. Changing an existing grouping into a category if it has children in the linearization (Allowing this would force changing the codes of the children therefore it is not allowed)
   
   
3. Changing an existing category into a grouping if it has children in the linearization (Same as above)
   
   
4. Inserting an category in between two existing sibling categories. Categories to an existing siblinghood needs to be entered at the end before the residuals.
   
   
5. Re-ordering of any kind won’t be possible as the ordering would be based on the codes which won’t change.
   
   
6. Retiring an entity that contains children that are not retired and replacing it with another entity that contains the old children. (This is not possible because the new entity cannot keep the same code of the retired one and if we give a new code its code won’t be compatible with the children.)
   
   
7. Moving an existing category in a way that would imply changing its code. E.g. You can’t move the category 2B01.2 which is under 2B01 as a child of 2B00

 

Some more boring stuff about submitting for changes:

https://icd.who.int/icd11refguide/e...ngandMaintenance|proposal-completeness|c3-8-4

3.8.4 Proposal completeness
Any individual can submit a proposal for an update to the ICD. Proposals shall be provided in the format of a short (approximately 500-words) explanation with references to underpinning literature and evidence (publications in peer reviewed journals, or in official meetings of WHO, its CC or NGO in official relationships). The proposal shall also visualize the changes in the position and address potential impact on entities outside the proposal.

• The author has registered with full name and affiliation and declared a possible conflict of interest.
• All proposals must have a clearly written and compelling rationale, with citations to establish the proposals’ evidence base.
• Proposals that suggest adding entities must have a description, and a description of the entity. This ensures the correct placement in the foundation. The rationale must have a scientific background, with references to publications in peer reviewed journals, or in official meetings of WHO, its CC or NGO in official relationships.
• Proposals for new codes should include information about how the case would be coded if the proposed new code is not accepted.
• Proposals with impact on the statistics must include a description or analysis of the resulting impact.
• Proposals suggesting rule changes must come with an impact analysis.
• An incomplete proposal will be returned to the author.
• The proposal mechanism will not allow submitting proposals without rationale or with missing description or definition, adequate to process the proposal.

3.8.5 Proposal Timelines
Proposals can be submitted at any time. No impact proposals are processed on an ongoing basis, proposals requiring review by any of the groups and committees involved in the workflow, are bundled every 28 February of a year and routed in the necessary workflow.

Proposals are processed in parallel by the relevant groups. Formal comments are provided in 2 rounds (2 Months, 1 Month) -offering the opportunity for edits in between.
Final decision about acceptance, rejection or ‘further discussion’ is taken at a teleconference of the CSAC in June every year. Formal confirmation of the translated proposals is done by the council teleconference in September. Problematic cases are held over for face-to-face discussion at the annual meeting.
Official releases are published end September for validity according to the updating cycle of the kind of proposal, earliest being proposals for adoption in January of the following year (minimum 6 months for translation, 3 months for formal dissemination, e.g. for clinical detail, secondary parents or synonyms).

----------------------

Note that the SNOMED CT terminology system has a twice yearly update process.

 

I think that link is broken?

 

Ah, I have been looking everywhere for that WHO 'eponymous illness' link, I recalled reading it a couple years back, glad to find it here! Also, this is quite interesting article (and refers to these WHO recommendations): https://www.newyorker.com/tech/annals-of-technology/a-modern-guide-to-naming-diseases

 

Thanks, Nassim, try this one:

https://confluence.ihtsdotools.org/display/DOCEG/3.5+Eponyms

I've edited the original post to add this revised link.