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IHTSDO-674 (artf229968, artf235395) Review hierarchy: Monster (disorder)

IHTSDO-674 (artf229968, artf235395) Review hierarchy: Monster (disorder)

2016-Dec-30

Source document not uploaded to confluence. 

 

IHTSDO Content development – fast track (simple/single changes)

https://snomed.atlassian.net/browse/IHTSDO-674

Title

Renaming or retiring 54900001 |Monster (disorder)| and 14 other disorders that use the outdated term “monster”.

Version Information

Document Author(s):

Monique van Berkum

Change Owner:

 

Content Editor:

 

Version:

Version 0.1

Date Created:

12 December 2015

Document status

Draft

Related Tracker Artifact(s):

artf229968 : Review hierarchy: Monster (disorder) 

artf235395 : Retire and replace terms with "monster"

Document review

@Guillermo Reynoso Feb 26, 2016 Review of version 0.1 requested. Thank you. 

Reviewer

Review date

Comment

James T. Case

9/10/2016

No additional comments.

 

 

 

 

 

 

Statement of problem as requested or initially identified

Two related artifacts on the IHTSDO Content Tracker and a SIRS request address this issue.

artf229968 : Review hierarchy: Monster (disorder)

Description: Review hierarchy beginning at: |54900001|Monster (disorder)|

Fetal monster does seem to be of common use in the literature, although it is discouraged.   We might be able to combine it with the more currently acceptable terms like “Fetal malformation” or “Fetal developmental anomaly” but the main issue is the degree of the deformity with monsters being non-viable and usually missing substantial critical parts of the body. 

There is a problem that many of the congenital anomalies would fall under this primitive term and perhaps we should just get rid of it.

 

artf235395 : Retire and replace terms with "monster"

Description: A request from an affiliate to retire everything containing the word "monster" with a more contemporary term. Each of the ones I have looked at has a more "scientific" name and many of the child concepts under "Monster" have additional parents already so the removal of "Monster" would not be an issue.

 

Related SIRS Request ID 449083

Description: These terms are offensive to patients, parents, and other family members. Please retire these terms and use other appropriate terms when possible. The terms were reported by a neonatologist to be offensive to parents. If it is not possible to retire these descriptions, are there suitable replacements to use as fully specified names?

Relevance to International edition

54900001 |Monster (disorder)| and 14 other disorder concepts in SNOMED CT use the term “monster” in the FSN or in a description. These are not high impact concepts. They represent relatively rare disorders. However, the term may be offensive to patients and their families.

Related changes impacted by this content development request

This project will have minimal impact on other content with the exception that a few of the concepts in question will be retired and their subtypes will be assigned to more distal ancestors.

Additionally, in the process of evaluating these concepts, it became apparent that SNOMED CT has disorder concepts that represent the fetus which has an anomaly (e.g., 84648007 |Acardiac monster (disorder)|) as well as concepts that represent the disorder (e.g., 205834002 |Acardia (disorder)|) which may be present in a fetus. Often, the two representations are intermingled through Is_a Relationships or by Descriptions. In some cases, the “<anomalous fetus> (disorder)” is a subtype of the “<anomaly> (disorder)” and vice versa. In other cases, “<anomalous fetus>” is a synonym of the “<anomaly>” concept or vice versa.

Examples:

84648007 |Acardiac monster (disorder)| Is_a 205834002|Acardia (disorder)|

The fetus with the disorder (an Acardiac monster) is modelled as a subtype of the disorder (Acardia). This is somewhat analogous to “Patient with cancer” Is_a Cancer.

 

609417004 |Fetal anencephaly (disorder)| Is_a 89369001 |Anencephalus (disorder)| (the latter has Descriptions: Anencephalic monster and Anencephaly)

Anencephalus is use to denote a fetus or infant with anencephaly. In this example, the disorder |Fetal anencephaly| appears to be modelled as a subtype of the fetus with the disorder |Anencephalus| which also has a Description of Anencephaly.

 

91848009 |Acephaly (disorder)| has a synonym of  Acephalus

Acephaly is congenital absence of the head, whereas Acephalus is a fetus without a head. In this example, there is only one concept which represents both the “<anomaly> (disorder)” and the “<anomalous fetus> (disorder)”.

 

36745003 |Acraniate monster (disorder)| was recently retired as a duplicate for 203923004 |Acrania (disorder)|

In this example, the concept that represents the “<anomalous fetus> (disorder)” was retired as a duplicate for the “<anomaly> (disorder)”.

 

The issue of the lack of clarity in the distinction between “<anomalous fetus> “, “<anomaly>” and “fetal <anomaly>” in SNOMED is outside of the scope of this project. Nonetheless, it is a consideration in how the concepts in this project are dispositioned. It impacts not only low level concepts, but also high level, sufficiently defined concepts (e.g. 702709008 |Congenital anomaly of fetus (disorder)| and 76654001 |Congenital malformation (disorder)|). The degree or duplication and ambiguity in this content reduces the likelihood of interoperability for users and makes selecting appropriate supertypes for some of the concepts in this project challenging.

Agreed scope statement

In scope: The project will review the 15 concepts listed below with “monster” terms and will suggest a more acceptable term for a “monster” term or will suggest retiring the concept.

  • 54900001 |Monster (disorder)|

  • 43452005 |Double monster (disorder)|

  • 43452005 |Single monster (disorder)|

  • 68877005 |Triplet monster (disorder)|

  • 84648007 |Acardiac monster (disorder)|

  • 60697001 |Compound monster (disorder)|

  • 90313000 |Autositic monster (disorder)

  • 46100008 |Parasitic monster (disorder)|

  • 67254002 |Sirenoform monster (disorder)|

  • 44518003 |Celosomial monster (disorder)|

  • 89369001 |Anencephalus (disorder)| has Description: Anencephalic monster

  • 31269002 |Polysomatous monster (disorder)|

  • 205777005 |Diaxial (double) monster (disorder)|

  • 4004009 |Monster with cranial anomalies (disorder)|

  • 205796009 |Single monster, specified type (disorder)|

 

Out of scope: The project will not:

  1. Address other incorrect descriptions on the 15 concepts listed (e.g., descriptions which represent the <anomaly> on concepts for which the FSN represents the “<anomalous fetus>”

  2. Address incorrect modeling of the concepts in question

  3. Identify duplicate concepts for the concepts in question

  4. Address other fetal terms that may be offensive (e.g., |Frog fetus (disorder)|)

Identify additional changes       

There are no additional changes identified to complete the task as defined by the scope statement. Additional changes related to the issues raised in the Section on “Related changes impacted by this content development request” will require a separate content project.

Solution proposed

  1. Concepts for which an acceptable, equivalent term is available will remain active but the FSN with “monster” and/or associated “monster” description(s) will be retired and, where needed, replaced with a new term. In many cases, the new term will be the Greek or Latin scientific term for the “<anomalous fetus>”.  

 Concepts with FSN changes of this nature will not be retired as per the Editorial Guide Section    7.3.1 Minor changes in the Fully Specified Name which states:

The Concept does not need to be retired in cases where the Fully Specified Name (FSN) undergoes minor changes…that do not alter its meaning …



This will be the approach for:

84648007 |Acardiac monster (disorder)| Revised

90313000 |Autositic monster (disorder) Revised

46100008 |Parasitic monster (disorder)| Revised

67254002 |Sirenoform monster (disorder)| Revised

44518003 |Celosomial monster (disorder)| Revised

31269002 |Polysomatous monster (disorder)| Revised

89369001 |Anencephalus (disorder)| - Description Anencephalic monster Revised

 

Example:

The FSN Acardiac monster (disorder) and its matching description would be retired and replaced with Acardius (disorder).

 

 2. Concepts for which an acceptable, equivalent term to replace the “monster” term does not      exist will be retired as outdated without an association to an existing concept.

The decision not to provide an association was based on there not being suitable concepts to use for REPLACED BY that will exactly capture the meaning of these concepts and WAS A is being phased out (information about prior ancestors can now be obtained by alternative means).

 

This will be the approach for:

54900001 |Monster (disorder)|  retired

43452005 |Double monster (disorder)| retired

43452005 |Single monster (disorder)| retired

68877005 |Triplet monster (disorder)| retired

60697001 |Compound monster (disorder)| retired

205777005 |Diaxial (double) monster (disorder)| retired

4004009 |Monster with cranial anomalies (disorder)| retired

205796009 |Single monster, specified type (disorder)| retired

 

The decision to retire these concepts was made for the following reasons:

  •  

    • Alternative terms which can be used to replace the current FSNs for these concepts do not exist. To exactly reproduce the meaning of these concepts would essentially require text definitions, phrases or full sentences which would not be appropriate as FSNs.

    • The definitions for several of these concepts vary significantly depending on the source.

    • Partially capturing the meaning of these concepts with less granular FSNs will not be useful. The new concepts would not be exact replacement concepts for the retired concepts and they would also not be able to be sufficiently defined with definitions that would reliably aggregate their appropriate subtypes.

    • The concepts being retired are not high-use, high impact concepts.



Example:

54900001 |Monster (disorder)| will be retired as outdated.

 

Definition of Monster per Dorland’s 32nd Edition:

A term formerly used to denote a fetus or infant with such pronounced developmental anomalies as to be grotesque and usually nonviable

 

Although “teras” is a term that was once used a synonym for monster, it is also no longer included in Dorland’s 32nd Edition (as it means monster in Greek).

Although “teras” is a term that was once used a synonym for monster, it is also no longer included in Dorland’s 32nd Edition (as it means monster in Greek).

 

Replacing “monster” with a more general replacement concept such as “Fetus or infant with severe developmental anomaly (disorder)” was considered. However, this concept cannot be sufficiently defined with a concept definition that would reliably aggregate appropriate subtypes (of which there would be many in SNOMED CT).

 

3. Concepts which are subytpes of the concepts being retired should be given stated Is_a relationships to 276654001 |Congenital malformation (disorder)| and 609520005 |Disorder of fetal structure (disorder)| (the two current inferred parents of |Monster (disorder)|) if these concepts are not already their inferred ancestors.



Stakeholder input

The related artifact, artf235395 : “Retire and replace terms with "monster" was created by the IHTSDO Head of Terminology who added the description:

“A request from an affiliate to retire everything containing the word "monster" with a more contemporary term. Each of the ones I have looked at has a more "scientific" name and many of the child concepts under "Monster" have additional parents already so the removal of "Monster" would not be an issue.”

 

This suggested approach, to rename the concepts for which more scientific names are available and to perhaps retire the ones for which that is not possible, is a similar to the proposed solution in this document.

 

Impact assessment

The project will remove offensive terms that refer to a fetus with severe anomalies as a “monster”. There will not be a significant impact to other concepts in the terminology because the majority of the concepts in question are low-level concepts and the impact on other concept definitions will be very small.

 

Risk assessment

Eight concepts will be retired and will no longer be available to users. Seven concepts will remain active but will no longer contain the word “monster”. Although offensive and outdated, this term may still be used at times and possibly be more recognizable to some users than the substitute terms. A number of the subtypes of |Monster (disorder)|, which also represent profound fetal anomalies, already omit “monster” and only use the Latin term (e.g., 57918009 |Janiceps (disorder)| etc.).

 

This risk of retiring this content or of removing the term monster is mitigated somewhat by the fact that these are low level, infrequently used concepts which are probably used even less in records today because of the increased concern about their offensive nature.

 

The primary benefit of the project is the removal of terms which are offensive to patients and their families.

 

Approval process 

Complete

Approved by

Approval Date

?

Content Development Manager

 

Y

Head of Terminology

9/10/2016

?

<Other>

 

Priority         

  • Very high

  • High

  • Medium 

  • Low

Specify the basis for the above priority assignment

Priority had already set by the IHTSDO Head of Terminology for artf235395.

 

Content editing

Details for the proposed content changes are outlined in the table below. The changes can be made by one editor.

 

Details of content changes

 

As of the July 2015 Release:

 

 

Concept

Descriptions

Relevant Definitions

Recommended Action

54900001 |Monster (disorder)|

Monster,

Teratism

Dorland’s 27th Edition (1988)

monster - a fetus or infant with such pronounced developmental anomalies as to be grotesque and usually nonviable. Also called teras.

 

 

Dorland’s 32nd Edition (2012)

monster (def 2.)- A term formerly used to denote a fetus or infant with such pronounced developmental anomalies as to be grotesque and usually nonviable

 

teratism - an anomaly of formation or development.

 

Stedman’s

monster - Outmoded and inappropriate term for a malformed embryo, fetus, or individual.

 

Mosby's Medical Dictionary

teratism - any congenital or developmental anomaly that is produced by inherited or environmental factors or a combination of the two. Any condition in which a severely malformed fetus is produced.

 

  1. Retire concept as outdated without a replacement.

 

Status - retired

 

43452005 |Double monster (disorder)|

Double monster,

Twin monster

Dorland’s 27th Edition

double monster – one arising from a single ovum but with duplication or doubling of head, trunk, or limbs

 

Dorland’s 32nd Edition

No entry

 

  1. Retire concept as outdated without a replacement.

 

Note: Alternative options for users exist but are not exact duplicates:

72014004 |Abnormal fetal duplication (disorder)|

Or

70013003 |Asymmetrical conjoined twins (disorder)|

Status = modeled

43452005 |Single monster (disorder)|

Single monster

Dorland’s 27th Edition

single monster - one with a single body but with a defect, malformation or displacement, or an enlargement or duplication of an organ.

 

Dorland’s 32nd Edition

No entry

 

  1. Retire concept as outdated without a replacement.

Status = modeled

68877005 |Triplet monster (disorder)|

Triplet monster

Dorland’s 27th Edition

triplet monster - a monster with triplication of body parts

 

Dorland’s 32nd Edition

No entry

 

  1. Retire concept as outdated without a replacement.

Status = modeled

84648007 |Acardiac monster (disorder)|

Acardiac monster, Acardiac twins,

Acardiacus,

Acardius

Dorland’s 27th Edition

arcadiac monster – acardius

 

Dorland’s 32nd Edition

acardius - an imperfectly formed free twin fetus, lacking a heart and invariably lacking other body parts as well: also called Fetus acardiacus

 

Stedman’s

acardius — A twin without a heart that remains viable by using the placental circulation of its mate; usually other body parts are also absent.

 

  1. Retire current FSN and matching description.

  2. Rename concept Acardius,(disorder)

Status = modeled

 

60697001 |Compound monster (disorder)|

Compound monster,

Incomplete conjoined twins

Dorland’s 27th Edition

compound monster - one which shows some duplication of body parts

 

Dorland’s 32nd Edition

No entry

 

Note: Definitions for the synonym “Incomplete conjoined twins” vary significantly and this was not suggested as a replacement FSN because it has a different meaning than Compound monster in some contexts.

 

  1. Retire concept as outdated without a replacement.

 

Note: Alternative options for users exist but are not exact duplicates:

72014004 |Abnormal fetal duplication (disorder)|

Or

70013003 |Asymmetrical conjoined twins (disorder)|

Status = modeled

90313000 |Autositic monster (disorder)

Autositic monster

Dorland’s 27th Edition

autositic monster - one capable of independent life, the circulation of which supplies nutrition to a parasitic monster.

 

Dorland’s 32nd Edition

autosite - the larger, more nearly normal component of asymmetrical conjoined twins, to which the parasite is attached as a dependent growth. autositic adj.

 

  1. Retire current FSN and matching description.

  2. Rename concept Autositic twin of asymmetrical conjoined twins (disorder)

  3. Add Description: Autosite of asymmetrical conjoined twins

Status = modeled

46100008 |Parasitic monster (disorder)|

Parasitic monster

Dorland’s 27th Edition

parasitic monster - an imperfect fetus unable to exist alone and attached to or deriving its nutrition from the circulation of another, more perfectly developed fetus

 

Dorland’s 32nd Edition

Parasitic fetus – in asymmetrical conjoined twins, an incomplete minor fetus attached to the larger, more completely developed twin

 

parasite - (def 2.) the smaller, less complete component of asymmetrical conjoined twins, which is attached to and dependent on the autosite.

 

  1. Retire current FSN and matching description.

  2. Rename FSN: Parasitic twin of asymmetrical conjoined twins (disorder)

  3. Add Description: Parasite of asymmetrical conjoined twins

Status = modeled

67254002 |Sirenoform monster (disorder)|

Sirenoform monster,

Siren

Sirenomelia

Symelia

Symmelia Symmelus Sympodia

Sympus

Sympus apus

Syrenomelus

 

Dorland’s 27th Edition

sirenoform monster – a sirenomelus

 

sirenomelus - a fetus with fused legs and no feet. Cf. sympus

 

Dorland’s 32nd Edition

Sireniform fetus – sirenomelus

 

sirenomelus - a fetus with apodal symmelia

 

symmelia: a developmental anomaly characterized by an apparent fusion of the lower limbs. There may be three feet (tripodial s.), two feet (dipodial s.), one foot (monopodial s.), or no feet (apodal s. or sirenomelia)

 

  1. Retire current FSN and matching description.

  2. Rename FSN: Sirenomelus (disorder)

  3. Add Description: Sireniform fetus

 

Status = modeled

 

44518003 |Celosomial monster (disorder)|

Celosomial monster, Celosomia

Celosomus

Dorland’s 27th Edition

celosomian monster – a celosomus

 

Dorland’s 32nd Edition

celosomus: - a fetus with celosomia

 

celosomia - a developmental anomaly characterized by fissure, or absence of the sternum, with hernial protrusion of the viscera.

 

  1. Retire current FSN and matching description

  2. Rename FSN: Celosomus (disorder)

Status = modeled

89369001 |Anencephalus (disorder)|

Anencephalic monster

Anencephaly

Congenital absence of brain

Dorland’s 27th Edition

anencephalus - a monster exhibiting anencephaly

 

Dorland’s 32nd Edition

anencephalus - an infant exhibiting anencephaly

 

  1. Leave existing FSN.

  2. Retire Description: Anencephalic monster

Status = modeled

 

31269002 |Polysomatous monster (disorder)|

Polysomatous monster

Dorland’s 27th Edition

polysomatous monster – a monster consisting of multiple components, each of which shows some of the characteristics of a separate individual

 

polysomus – a monster exhibiting polysomia

 

Dorland’s 32nd Edition

polysomatous monster – no entry

 

polysomus - conjoined twins exhibiting polysomia

 

polysomia - a doubling or tripling of the body of a fetus

 

Stedman’s

polysomia - fetal malformation involving two or more imperfect and partially fused bodies.

 

  1. Retire current FSN and matching description.

  2. Rename FSN: Polysomus (disorder)

Status = modeled

205777005 |Diaxial (double) monster (disorder)|

Diaxial (double) monster

Dorland’s 27th Edition

diaxial monster - one which shows duplication of the body axis

 

Dorland’s 32nd Edition

No entry

 

  1. Retire concept as outdated without a replacement.

Note: Alternative options for users exist but are not exact duplicates:

72014004 |Abnormal fetal duplication (disorder)|

Or

70013003 |Asymmetrical conjoined twins (disorder)|

Status = modeled

4004009 |Monster with cranial anomalies (disorder)|

Monster with cranial anomalies

 

  1. Retire concept as outdated without a replacement.

Note: Alternative option exists for users but is not an exact duplicate:

51655004 |Congenital anomaly of skull (disorder)|

Status = modeled

205796009 |Single monster, specified type (disorder)|

Single monster, specified type

Derived from ICD- 9 759.8 Other specified anomalies: Monster (single), specified type.

Similar to other “otherwise specified” or OS concepts in SNOMED CT which have been inactivated.

 

  1. Retire concept as outdated without a replacement.

Status = modeled

 

Manual quality check

Peer review.

Automated quality check

An automated quality check is not indicated.

Publish to release branch

To be determined by the IHTSDO.

 

References

Dorland’s Medical Dictionary, 27th edition (1988)

Dorland’s Medical Dictionary, 32nd edition (2012)

Stedman’s Medical Dictionary, part of Lippincott Williams & Wilkins Medical Dictionary Copyright © 2006

Mosby's Medical Dictionary, 8th edition. (2009).

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