PVFS, ME and CFS in classification and terminology systems: notes for the future

Post #355 Shortlink: https://wp.me/pKrrB-4Yv

In 2002, I set up FreeMEuk — a Yahoo Group support and information exchange for patients with ME, CFS, and for carers, like myself. In 2007, I launched ME agenda to provide patients, carers and advocates with information, resources and commentary on the political issues affecting the lives of myalgic encephalomyelitis (ME) patients in the UK.

In January 2010, I created this site specifically to monitor and report on the development of the American Psychiatric Association’s DSM-5, the development of the World Health Organization’s ICD-11 and on other classification and terminology systems. Where appropriate, I have galvanized stakeholders to participate in review and comment exercises or co-ordinated other forms of response.

Down the years, I’ve undertaken numerous short and long-term ad hoc projects, advised others on technical matters relating to classification and terminology systems, submitted and collaborated in the submission of proposals, briefed politicians and patient organizations and kept patient forums up to date with key developments.

Today I am retiring after 17 years of advocacy work.

My sites will remain online for the foreseeable future. Over the coming months I shall be carrying out some housekeeping on this site to remove or archive older, less relevant content.

Classification and terminology systems are going to need continued monitoring; where required, input from stakeholder groups — clinicians, researchers, health practitioners and professional body allies, social workers, disability lawyers and advocacy organizations will need to be co-ordinated.

Where no process for public stakeholder input currently exists, channels of direct communication will need to be opened with the agencies responsible for the development and management of these systems and collaborative dialogues established.

WHO, for example, ostensibly gives more consideration to evidence based submissions supported by rationales, international consensus and input from clinical and professional bodies — has scant regard for patient opinion and none whatsoever for petitions or mass mailings — the latter and similar types of “action” will only undermine the careful work and discourse that I and others have fostered.

All these systems will require regular monitoring:

 

DSM-5:

DSM-5 published in May 2013; it has an update process which reviews formal submissions for changes to criteria, related texts, assessment measures or corrections. DSM-5 also absorbs relevant coding changes in the annual FY releases of the U.S. specific ICD-10-CM. Approved proposals are posted for a 45 day stakeholder comment period. For example, in 2015, an edit in the text for Somatic symptom disorder¹ was approved for implementation and the revised text published in the DSM-5 Update Supplement.

1 DSM-5 Update: Supplement to DIAGNOSTC AND STATISTICAL MANUAL OF MENTAL DISORDERS, FIFTH EDITION October 2018

 

ICD-10:

Member states using the WHO’s ICD-10 don’t all use the same version (or the most recent version), for example, NHS England currently mandates the use of ICD-10 Version: 2015, not Version: 2016. WHO has said that the final update to ICD-10 will be Version: 2019. This final release is understood to have been prepared but is not currently available on the ICD-10 Browser platform.

 

ICD-10-CM:

The U.S. uses ICD-10 for reporting mortality and developed a “clinical modification” of ICD-10 (called ICD-10-CM) for morbidity. A new release of ICD-10-CM is posted on the CDC website annually, in June.

There are two public NCHS/CDC Coordination and Maintenance Committee meetings a year through which proposals for changes to the ICD-10-CM can be submitted for discussion (in March and September) followed by a stakeholder comment period.

At the September 12, 2018 C & M Committee meeting, proposals for changes to the existing coding of R53.82 Chronic fatigue syndrome NOS; G93.3 Postviral fatigue syndrome, Benign myalgic encephalomyelitis; and a second option for addition of the SEID term were presented for consideration and public comment¹. Whilst no changes for these codes were approved for implementation in the FY 2020 ICD-10-CM release, this topic will need continued monitoring as it may be revisited at a future C & M Committee meeting for presentation of revised proposals.

1 ICD-10-CM Coordination and Maintenance Committee Meeting, September 11-12, 2018, Diagnosis Agenda Part 2

Other country specific clinical modifications of ICD-10:

Around 25 member states are also using a modification of the WHO’s ICD-10. For example: Canada (ICD-10-CA); Germany (ICD-10-GM); Australia (ICD-10-AM). Belgium, Luxembourg and Spain use ICD-10-CM; Ireland and Slovenia use ICD-10-AM.

Countries using modifications of ICD-10 have individual update cycles and varying policies around public stakeholder input and review. Some countries post their Tabular List and Index modifications in the public domain; others are available only under licence, for example, Australia’s ICD-10-AM isn’t publicly available. The coding, hierarchy and chapter location of the PVFS, BME and CFS terms differs between some of the clinical modifications, while others remain consistent with the structure of the WHO’s ICD-10.

This table from the eHealth DSI Semantic Knowledge Base project compiles information provided from a number of member states on their use of ICD (or a modification of ICD) and their plans regarding potential future implementation of ICD-11. Information has been provided by: Austria, Belgium, Croatia, Cyprus, Czech Republic, Estonia, France, Germany, Greece, Hungary, Ireland, Italy, Luxenbourg, Malta, Netherlands, Portugal, Slovenia and Spain: Current status of the use of ICD by eHDSI deploying countries (2018)

 

SNOMED CT:

SNOMED CT is a comprehensive clinical terminology system used in electronic patient health records. SNOMED CT maps to ICD-10 and there is a SNOMED CT to ICD-11 Mapping Project in progress.

SNOMED International has thirty-nine member countries. There is a SNOMED CT International Edition, for which two releases are issued per year (in January and July). There are a number of country specific national editions which release twice yearly updates on a staggered schedule. 12 of these national editions can be viewed on the SNOMED CT Browser platform.

SNOMED CT national editions absorb the changes in the most recent release of the International Edition but they can also include additional country specific terms. For example, the UK Edition has a unique Concept term: Medically unexplained symptoms (SCTID: 887761000000101). Prior to March 2019, the SNOMED CT Netherlands Edition had retained the term “neurasthenie” under Synonyms to Chronic fatigue syndrome, although the Concept term: Neurasthenia (SCTID: 268631001) and some associated codes had been retired from the International Edition and from all other national editions, some years ago. Following a request supported by a rationale, the term “neurasthenie” has now been removed from the Netherlands Edition.

The SNOMED CT Concept term for Chronic fatigue syndrome is SCTID 52702003 Chronic fatigue syndrome (disorder). Benign myalgic encephalomyelitis; and Myalgic encephalomyelitis are included as Synonym terms.

Following a successful submission in February 2018 for the addition of a new parent, SCTID: 52702003 Chronic fatigue syndrome (disorder) has been assigned under parent: SCTID: 118940003 Disorder of nervous system (disorder) since the July 2018 release of the SNOMED CT International Edition. This change of parent has been incorporated into the national editions.

The International Edition and the national editions of SNOMED CT will need monitoring twice yearly for changes and additions to their content.

 

ICD-11:

On May 25, 2019, the 72nd World Health Assembly voted unanimously to adopt the ICD-11. The earliest date from which member states can start using the ICD-11 code sets for reporting data is January 1, 2022. Countries are beginning to evaluate the new edition and develop road maps but even early implementers are anticipated to take several years to prepare their health systems for migration. There is no mandatory implementation date and countries will transition to ICD-11 at their own pace and according to their resources and requirements. For some years to come, WHO will be accepting data reported using both ICD-10 and ICD-11 code sets.

ICD-11 update and maintenance: The current release of ICD-11 (Version 04/2019) on the Blue ICD-11 MMS platform is a stable release but an update and maintenance cycle is already in place.

The various ICD-11 Topic Advisory Groups and sub working groups, the Revision Steering Group and the Joint Task Force have all been sunsetted. WHO is now advised on how to process proposals for changes to ICD-11 by the Family of International Classifications Network (WHO-FIC); the Classifications and Statistics Advisory Committee (CSAC); the Medical and Scientific Advisory Committee (MSAC); the Mortality and Morbidity Reference Groups; and the Functioning and Disability Reference Group.

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. Additions to the ICD-11 index can be done on an ongoing basis. (There are currently in the region of 1200 unprocessed proposals waiting to be processed, with new proposals being submitted daily by WHO, professional bodies and other stakeholders.)

PVFS, BME, CFS: In a decision supported by the MSAC and CSAC committees, WHO rightly rejected the proposal of Dr Tarun Dua/Topic Advisory Group Neurology to delete the G93.3 legacy terms from the Diseases of the nervous system chapter and reclassify these terms in the Symptoms, signs chapter, under Symptoms, signs or clinical findings of the musculoskeletal system.

All three terms have been retained under their legacy chapter, under parent class: Other disorders of the nervous system, with 8E49 Postviral fatigue syndrome retained as the Concept Title. Benign myalgic encephalomyelitis; and chronic fatigue syndrome are both specified as Inclusion terms. Reciprocal exclusions for MG22 Fatigue were submitted for and approved.

The Proposal Mechanism platform for ICD-11 will need constant surveillance: there are currently no unprocessed proposals pending review for PVFS, BME and CFS. To date, WHO has rejected proposals for deprecation of the word “Benign” from Benign myalgic encephalomyelitis. This will need pursuing.

 

BDD: A proposal submitted by a third party in April 2017 for Deletion of 6C20 Bodily distress disorder has remained under review with the CSAC committee. According to WHO admins, in June 2019: “This proposal is being sent to MSAC to ensure the precedent decision on this issue still stands. Team3 WHO 2019-Jun-12 – 16:40 UTC”

(In February 2019, my own recommendations for 6C20 Bodily distress disorder had been marked as rejected by a different WHO admin team, with the comment: “This proposal has been extensively discussed by WHO and its advisory committees. There is no new scientific evidence to support this proposal and it will not be further processed. Team 2 WHO 2019-Feb-26 – 23:04 UTC)

I have requested that in any ongoing CSAC/MSAC deliberations in relation to the Bodily distress disorder category that these previously rejected recommendations are reviewed and reconsidered, including submissions for exclusions for PVFS, BME and CFS under 6C20 Bodily distress disorder.

See: Table: Status of ICD-11 processed proposals, Suzy Chapman, April 2019, for more information on approved and rejected proposals.

 

Clinical modifications of ICD-11:

It is understood that WHO’s intention is to limit development of national modifications and that policies around the licensing of ICD-11 are still being formulated. Countries developing modifications of ICD-11 will need surveillance.

See post World Health Assembly adopts ICD-11: When will member states start using the new edition? for more information on country plans.

See Presentation slides #36-38 for more information on licensing and the development of country modifications: Insights into the Next Revision: Like Texas, Everything is Bigger in ICD-11, Kathy Giannangelo, RHIA, CCS, CPHIMS, FHIMA, Texas Health Information Management Association.

 

ICD-11 and the CDDG guideline for mental disorders:

For ICD-11, the WHO Department of Mental Health and Substance Abuse has developed the “Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders” (an equivalent publication to ICD-10’s “Blue Book”).

The CDDG provides expanded clinical descriptions, essential (required) features, boundaries with other disorders and normality, differential diagnoses, additional features, culture-related features and codes for all mental and behavioural disorders commonly encountered in clinical psychiatry; it is intended for mental health professionals and for general clinical, educational and service use.

WHO has said it plans to release the CDDG “as soon as possible” after WHA’s adoption of ICD-11. But it remains unclear whether the CDDG has been finalized or if it will be released this month, later this year or next year. See this post Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders for more information.

Whilst clinicians have been able to register to review and provide feedback, no draft texts for the CDDG have been made available for public stakeholder scrutiny and comment and I have not had access, for example, to the most recent draft for the clinical descriptions and diagnostic guidelines for ICD-11’s Bodily distress disorder.

 

ICD-11 and the ICD-11 PHC:

Also under development is the WHO’s ICD-11 PHC — a clinical guideline written in simpler language to assist non-mental health specialists, especially primary care practitioners and non medically trained health workers, and also intended for use in low resource settings and low- to middle-income countries, with the diagnosis and management of common mental disorders. It comprises 27 mental disorders and contains no other disorders or diseases. Like the ICD-10 PHC (1996), this revised diagnostic and management guideline will not be a mandatory classification for member states.

For the mandatory core ICD-11 classification, WHO is going forward with the SSD-like Bodily distress disorder (BDD).

But the ICD-11 PHC is proposed to include a disorder category called “Bodily Stress Syndrome (BSS)” that has been adapted from the Fink et al (2010) Bodily distress syndrome (BDS). See Comparison of SSD, BDD, BDS, BSS in classification systems, July 2018.

Under exclusions and differential diagnoses for BSS, certain psychiatric and general medical diagnoses have to be excluded but CFS, ME; IBS; and FM appear not to be specified as exclusions. See this post Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders for more information.

It’s not known when this guideline is expected to be finalized and made available for download. The ICD-11 PHC has not been developed on a publicly accessible platform and draft texts are not available for public stakeholder review and comment. This non mandatory 27 mental disorder guideline needs close scrutiny.

 

ICPC-3:

The WONCA developed and WHO endorsed, International Classification of Primary Care (ICPC-2) is under revision for ICPC-3.

ICPC-2 is available in 34 countries; used in primary care in 27 countries and is mandatory in 6 EU countries, eg the Netherlands. The content of ICPC-3 will be linked to relevant classifications, such as ICD-10, ICD-11, ICF, ICHI, DSM-5, clinical terminologies such as SNOMED-CT, but also to previous versions of ICPC.

The draft content for ICPC-3 is not being developed on a publicly accessible platform and it’s unclear whether any form of stakeholder review will be undertaken or at what point.

Caveat: This ICPC-3 roadmap on an ICPC-3 Working Group platform may have been revised since it was posted: ICPC-3 Roadmap Milestones August 28, 2018.

Dr Marianne Rosendal (Aarhus University), who has published with Prof Per Fink, is the European representative on WONCA’s International Classification Committee and a member of the revision committee for ICPC-2, as is the U.S.’s, Dr Michael Klinkman. ICPC-2 meeting summary documents dating from 2010/2011 indicate that Dr Rosendal has discussed the potential for inclusion of a Bodily distress syndrome or similar disorder concept in the ICPC-3. Prof Per Fink is likely to be lobbying hard for its inclusion. The development of ICPC-3 will need very close monitoring.

 

Resources:

Comparison of Classification and Terminology Systems, Chapman & Dimmock, July 2018

Comparison of SSD, BDD, BDS, BSS in classification systems, Chapman & Dimmock, July 2018

Post: ICD-11 implementation package, June 06, 2019

Post: World Health Assembly adopts ICD-11: When will member states start using the new edition? June 17, 2019

Post: Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders, June 28, 2019

Insights into the Next Revision: Like Texas, Everything is Bigger in ICD-11, Kathy Giannangelo, RHIA, CCS, CPHIMS, FHIMA, Texas Health Information Management Association

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Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders

Post #354 Shortlink: https://wp.me/pKrrB-4IQ

The ICD-10 “Blue Book” and “Green Book”

In the World Health Organization’s ICD-10 Tabular List there are no disease or disorder descriptions, criteria or diagnostic guidelines in any chapters other than the brief description texts for disorders coded within Chapter V Mental and behavioural disorders.

The WHO describes these brief description texts as suitable for use by coders or clerical workers and to serve as a reference point for compatibility with other classifications. These brief texts are not recommended for use by mental health professionals.

Two companion publications were developed for use with ICD-10’s Chapter V which expand on these brief texts and provide clinical descriptions and diagnostic guidelines. These publications are available as license free downloads:

The ICD-10 Classification of Mental and Behavioural Disorders: Clinical descriptions and diagnostic guidelines (aka the “Blue Book”):​

https://www.who.int/classifications/icd/en/bluebook.pdf

intended for mental health professionals for general clinical, educational and service use.​

 

The ICD-10 Diagnostic criteria for research (aka the “Green Book”):​

https://www.who.int/classifications/icd/en/GRNBOOK.pdf

produced for research purposes and designed to be used in conjunction with the Clinical descriptions and diagnostic guidelines “Blue Book.”

 

A survey of nearly 5,000 psychiatrists in 44 countries sponsored by the WHO and the World Psychiatric Association found that 70% of respondents mostly used the ICD-10 classification system in their daily clinical work compared to 23% of practitioners primarily using the American Psychiatric Association’s DSM-IV [1].

 

ICD-11 and the CDDG

For ICD-11, the WHO Department of Mental Health and Substance Abuse has developed the “Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders.”

The CDDG provides expanded clinical descriptions, essential (required) features, boundaries with other disorders and normality, differential diagnoses, additional features, culture-related features and codes for all mental and behavioural disorders commonly encountered in clinical psychiatry; it is intended for mental health professionals and for general clinical, educational and service use.

The CDDG does not provide diagnostic criteria. The essential features are less rigid than DSM-5’s criteria sets and allow practitioners more flexibility to use clinical discretion when making a diagnosis.

 

CDDG review process

The CDDG review process has been undertaken via the Global Clinical Practice Network.

Qualified clinicians who signed up to participate in the CDDG guideline review process have been able to review and provide feedback on the draft content. No draft texts have been made available for public stakeholder scrutiny and comment and I have not had access, for example, to the most recent draft for the clinical descriptions and diagnostic guidelines for ICD-11’s Bodily distress disorder.

This paper in the February 2019 edition of World Psychiatry (Innovations and changes in the ICD-11 classification of mental, behavioural and neurodevelopmental disorders) describes major changes to the structure of the ICD‐11 classification of mental disorders as compared to ICD‐10; discusses new categories added for ICD‐11 and presents rationales for their inclusion; and describes important changes that have been made in each ICD‐11 disorder grouping [2].

What the paper does not give is a firm release date for the CDDG — stating only that the WHO will publish the CDDG as soon as possible following approval of the overall system by the World Health Assembly (WHA).

Member states approved the draft resolution to adopt ICD-11 at the 72nd World Health Assembly, in May 2019. Endorsement takes effect from January 01, 2022, which is the earliest date from which member states can begin reporting data using the new ICD-11 code sets.

Extract from Innovations and changes in the ICD-11 classification of mental, behavioural and neurodevelopmental disorders:

Disorders of bodily distress and bodily experience

ICD‐11 disorders of bodily distress and bodily experience encompass two disorders: bodily distress disorder and body integrity dysphoria. ICD‐11 bodily distress disorder replaces ICD‐10 somatoform disorders and also includes the concept of ICD‐10 neurasthenia. ICD‐10 hypochondriasis is not included and instead is reassigned to the OCRD [Ed: Obsessive‐compulsive and related disorders] grouping.

Bodily distress disorder is characterized by the presence of bodily symptoms that are distressing to the individual and an excessive attention directed toward the symptoms, which may be manifest by repeated contact with health care providers69. The disorder is conceptualized as existing on a continuum of severity and can be qualified accordingly (mildmoderate or severe) depending on the impact on functioning. Importantly, bodily distress disorder is defined according to the presence of essential features, such as distress and excessive thoughts and behaviours, rather than on the basis of absent medical explanations for bothersome symptoms, as in ICD‐10 somatoform disorders.

*Embedded links to the ICD-11 Orange Maintenance Platform disorder descriptions are not included in the paper.

DSM-5’s Somatic symptom disorder is listed under Synonyms to ICD-11’s Bodily distress disorder and indexed to 6C20.Z Bodily distress disorder, unspecified.

The CDDG is expected to be published as a licence free download. When the WHO has released the CDDG, I will update this post.

 

This Letter to the Editor published in the June 2019 edition of World Psychiatry (Public stakeholders’ comments on ICD-11 chapters related to mental and sexual health) summarizes common themes of the submissions for the mental disorder categories that generated the greatest response [3].

Extract:

A majority of submissions regarding bodily distress disorder were critical, but were often made by the same individuals (N=8). Criticism mainly focused on conceptualization (48%; κ=0.64) and the disorder name (43%; κ=0.91). Use of a diagnostic term that is closely associated with the differently conceptualized bodily distress syndrome5 was seen as problematic. One criticism was that the definition relies too heavily on the subjective clinical decision that patients’ attention directed towards bodily symptoms is “excessive”. A number of comments (17%; κ=0.62) expressed concern that this would lead to patients being classified as mentally disordered and preclude them from receiving appropriate biologically-oriented care. Some contributors submitted proposals for changes to the definition (30%; κ=0.89). Others opposed inclusion of the disorder altogether (26%; κ=0.88), while no submission (κ=1) expressed support for inclusion. The WHO decided to retain bodily distress disorder as a diagnostic category6 and addressed concerns by requiring in the CDDG the presence of additional features, such as significant functional impairment.

 

Note: “Use of a diagnostic term that is closely associated with the differently conceptualized bodily distress syndrome5 was seen as problematic.”

Whilst it is welcomed that this specific concern has been acknowledged within this Letter to the Editor, I have drawn to the authors’ attention that WHO/ICD Revision has repeatedly failed to respond to requests to provide a rationale for its re-purposing of a diagnostic term that is already strongly associated with the Fink et al (2010) Bodily distress syndrome*, despite provision of examples from the literature clearly demonstrating that these two terms have been used interchangeably by researchers and practitioners, since 2007 [4].

The potential for confusion and conflation of these differently conceptualized disorder constructs was acknowledged by the WHO’s Dr Geoffrey Reed, in 2015. However, there has been no discussion of this potential in any of the S3DWG working group’s progress reports and field trial evaluations. If the WHO is not willing to reconsider and remedy this problem, there is the expectation that a rationale for going forward with the Bodily distress disorder term is provided for clinical and public stakeholders.

*Operationalized in Denmark and beyond, BDS is differently conceptualized to ICD-11’s BDD diagnostic construct: BDS has very different criteria/essential features, based on physical symptom patterns or clusters from organ systems; psychobehavioural responses to symptoms do not form part of the BDS criteria; BDS requires the symptoms to be “medically unexplained”; is inclusive of a different patient population to ICD-11’s BDD, and crucially, is considered by its authors to capture myalgic encephalomyelitis, chronic fatigue syndrome, IBS and fibromyalgia patients under a single, unifying BDS diagnosis.

As an unprocessed proposal is currently under review with the CSAC/MSAC committees I have requested that earlier submissions, which were marked as rejected in February 2019 with no adequate rationale for dismissing the concerns raised within them, are reconsidered and that the WHO responds to three specific concerns:

a) its re-purposing of a disorder term already in use interchangeably for a differently conceptualized disorder construct;

b) the potential difficulties of maintaining disorder construct integrity within and beyond ICD-11 and the implications for clinical utility, data reporting and statistical analysis;

c) the requirement for adding exclusions under BDD for Concept Title 8E49 Postviral fatigue syndrome and its inclusion terms, to mitigate confusion/conflation with the Fink et al (2007, 2010) Bodily distress syndrome.

 

Bodily distress disorder in SNOMED CT

The SNOMED CT Concept term SCTID: 723916001: Bodily distress disorder was added to the July 2017 release of the SNOMED CT International Edition.

SNOMED International’s classification leads confirmed that the term had been added by the team working on the SNOMED CT and ICD-11 MMS Mapping Project as “an exact match for the ICD-11 term, Bodily distress disorder.”

In ICD-11, Bodily distress disorder has specifiers for three degrees of severity: Mild BDD; Moderate BDD; and Severe BDD, which are each assigned a unique code and a discrete description/characterization text.

It was submitted that including the three ICD-11 BDD severities might help clinicians and coders distinguish between the SNOMED CT/ICD-11 Bodily distress disorder concept term and the similarly named, but differently conceptualized, Bodily distress syndrome (Fink et al 2010), which has two severities.

A request for addition of the three BDD severities was submitted and approved in early 2018 and Mild BDD; Moderate BDD; and Severe BDD were added as three discretely coded for Children concepts for the July 2018 release of the International Edition and subsequently absorbed into the various national editions.

 

ICD-11 PHC

The ICD-11 CDDG should not be confused with the ICD-11 PHC.

Since 2012, I have been reporting on the parallel development of the ICD-11 Primary Health Care (PHC) Guidelines for Diagnosis and Management of Mental Disorders (ICD-11 PHC).

The ICD-11 PHC is a revision of the Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version. 1996.

ICD-11 PHC is a clinical tool written in simpler language to assist non-mental health specialists in primary care settings and non medically trained health workers, and also intended for use in low resource settings and in low- to middle-income countries.

It comprises 27 mental disorders considered to be most clinically relevant in primary care and low resource settings. (It is a misnomer to refer to the ICD-11 PHC as the “Primary Care version of ICD-11” since it contains just 27 mental disorders and no general medical diseases or conditions.)

It is important to note that like the ICD-10 PHC, this revised diagnostic and management guideline won’t be mandatory for use by member states, although the WHO hopes this revised edition will have greater clinical utility than the ICD-10 PHC (1996).

The WHO intends to make the ICD-11 PHC publication, once completed, free to download by anyone. There is currently no date available for its projected finalization or release.

The revision is the responsibility of the WHO Department of Mental Health and Substance Abuse advised by an external advisory group — the Primary Care Consultation Group (PCCG) which is chaired by Prof Sir David Goldberg*; Vice-chairs: Dr Michael Klinkman and WHO’s, Dr Geoffrey Reed.

*Prof Sir David Goldberg also chaired the working group for the development of ICD-10 PHC (1996). Dr Michael Klinkman is a GP who represents WONCA (World Organization of Family Doctors) and current convenor of WONCA’s International Classification Committee (WICC) that is responsible for the development and update of the WHO endorsed, ICPC-2 (International Classification of Primary Care).

The full draft texts for the 27 mental disorder categories proposed for inclusion in the ICD-11 PHC have not been made available for public scrutiny, but a number of progress papers, field trial evaluations and presentations have been published since 2010 [5-8].

25 of the 27 mental disorder categories proposed for inclusion in the ICD-11 PHC have equivalence with mental disorder classes within the core ICD-11’s Chapter 06.

ICD-11 PHC is proposed to include a disorder category called “Bodily stress syndrome (BSS)” which replaces ICD-10 PHC’s “F45 Unexplained somatic complaints/medically unexplained symptoms” and “F48 Neurasthenia” categories.

This proposed “Bodily stress syndrome (BSS)” diagnosis has been adapted from the Fink et al (2010) Bodily distress syndrome (BDS). “Bodily stress syndrome (BSS)” does not have direct equivalence to a diagnostic construct in the core ICD-11.

The ICD-11 PHC’s “Bodily stress syndrome (BSS)” requires at least 3 persistent, medically unexplained symptoms, over time, of cardio-respiratory, gastrointestinal, musculoskeletal, or general symptoms of tiredness and exhaustion, that result in significant distress or impairment.

Under exclusions and differential diagnoses for BSS, certain psychiatric and general medical diagnoses have to be excluded but CFS, ME; IBS; and FM appear not to be specified as exclusions. So this (non mandatory) 27 mental disorder guideline needs very close scrutiny.

For the mandatory core ICD-11 classification, the WHO is going forward with the differently conceptualized, Bodily distress disorder (BDD), which has close alignment with DSM-5’s Somatic symptom disorder.*

*See: Comparison of SSD, BDD, BDS, BSS in classification systems, Chapman & Dimmock, July 2018.

 

If ICD-11 PHC goes forward with its proposed BSS category, there will be all these diagnostic constructs in play:

Somatic symptom disorder (DSM-5; under Synonyms to BDD in the core ICD-11)
Bodily distress disorder (core ICD-11; SNOMED CT)
Bodily stress syndrome (ICD-11 PHC guideline for 27 mental disorders)
Bodily distress syndrome (Fink et al 2010, operationalized in Denmark and beyond)

plus the existing ICD-10 and SNOMED CT Somatoform disorders categories and their equivalents in ICPC-2.

 

References:

1 Reed GM, Correia J, Esparza P, Saxena S, Maj M (2011). The WPA-WHO global survey of psychiatrists’ attitudes towards mental disorders classification. World Psychiatry, 10, 118–131. https://onlinelibrary.wiley.com/doi/full/10.1002/j.2051-5545.2011.tb00034.x

2 Reed GM, First MB, Kogan CS, et al. Innovations and changes in the ICD-11 classification of mental, behavioural and neurodevelopmental disorders. World Psychiatry, 2019;18(1):3–19. doi:10.1002/wps.20611
Html: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6313247/
PDF: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6313247/pdf/WPS-18-3.pdf

3 Fuss J, Lemay K, Stein DJ, Briken P, Jakob R, Reed GM and Kogan CS. (2019). Public stakeholders’ comments on ICD‐11 chapters related to mental and sexual health. World Psychiatry, 18: 233-235. https://onlinelibrary.wiley.com/doi/full/10.1002/wps.20635

4 Chapman S. Proposal and rationale for Deletion of the Entity Bodily distress disorder. Proposal submitted via ICD-11 Beta draft Proposal Mechanism, March 02, 2017.

5 T P Lam, D P Goldberg, A C Dowell, S Fortes, J K Mbatia, F A Minhas, M S Klinkman. Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study, Family Practice, Volume 30, Issue 1, February 2013, Pages 76–87, https://doi.org/10.1093/fampra/cms037

6 MASTER PROTOCOL Depression, Anxiety and Somatic Symptoms in Global Primary Care Settings: A Field Study for the ICD-11-PHC Version 2 for WHO Research Ethics Review Committee.
http://www.psychiatryresearchtrust.co.uk/protocols/WorldHealth14.pdf

7 Fortes, Sandra, Ziebold, Carolina, Reed, Geoffrey M, Robles-Garcia, Rebeca, Campos, Monica R, Reisdorfer, Emilene, Prado, Ricardo, Goldberg, David, Gask, Linda, & Mari, Jair J.. (2019). Studying ICD-11 Primary Health Care bodily stress syndrome in Brazil: do many functional disorders represent just one syndrome? Brazilian Journal of Psychiatry, 41(1), 15-21. Epub October 11, 2018.
Html: https://dx.doi.org/10.1590/1516-4446-2018-0003
PDF: http://www.scielo.br/pdf/rbp/v41n1/1516-4446-rbp-1516444620180003.pdf

8 Presentation: Rosendale, M (2017). MUS becomes Bodily Stress Syndrome in the ICD-11 for primary care

 

Resources:

Comparison of Classification and Terminology Systems, Chapman & Dimmock, July 2018

Comparison of SSD, BDD, BDS, BSS in classification systems, Chapman & Dimmock, July 2018

ICD-11: Recently processed proposals for Postviral fatigue syndrome, ME, CFS; Fatigue; and Bodily distress disorder

Post #350 Shortlink: https://wp.me/pKrrB-4Nz

ICD-11 endorsement

Next month, the World Health Organization (WHO) intends to present a stable version of ICD-11 to the 72nd World Health Assembly for member state endorsement.

The WHO Executive Board will submit a Resolution for adoption of what it describes as a “preparation for implementation” version of the ICD-11 Mortality and Morbidity Statistics (ICD-11 MMS).

 

#WHA72 Geneva May 22–28, 2019 

Website: SEVENTY-SECOND WORLD HEALTH ASSEMBLY

Two key documents:

Provisional Agenda Item 12.7 (A72/29): ICD-11 Report by the Director-General

(A72/29 Add.1): Draft Resolution for adoption of ICD-11

 

If adopted, endorsement would not come into effect until 1 January 2022.

After that date, member states can begin reporting data using the ICD-11 code sets when their countries have prepared their health systems for transition and implemented the new edition.

There is no mandatory date by which member states must migrate to the new edition and for a period of time, data will be collected and aggregated using both ICD-10 and ICD-11. It’s anticipated that even the earliest implementers will take several years to prepare their countries for transition.

 

Update and revision

Once endorsed, ICD-11 will be subject to an annual update and revision process, as ICD-10 has been.

Minor changes to content can be considered for incorporation on an annual basis. Major changes would be considered for incorporation on a 5 yearly update cycle.

Responsibility for reviewing and processing proposals now lies with the Medical Scientific Advisory Committee (MSAC) and the Classifications and Statistics Advisory Commitee (CSAC), which takes over from the ICD-10 Update and Revision Committee (URC). These committees are working through a backlog of proposals.

The ICD-11 Proposal Mechanism platform will remain online and open to stakeholders for new comments and new submissions for changes, additions and improvements. Submissions for changes will also be received from member states via the WHO-FIC Network.

[See ICD-11 Reference Guide: 3.8 Annex: ICD-11 Updating and Maintenance for information on the ICD-11 update and revision cycle and protocol for submission of new proposals.]

 

Recently processed proposals

Between February and April, this year, a number of proposals were processed.

These include proposals for Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic fatigue syndrome; proposals for Fatigue (was Malaise and fatigue in ICD-10); and proposals for Bodily distress disorder.

Proposals submitted before March 30, 2017 were supposed to have been reviewed before the end of 2017 for consideration for potential inclusion in the initial release of the ICD-11 MMS — but many of these weren’t processed, despite having met the submission deadline.

Proposals relating to Postviral fatigue syndrome and its inclusion terms were in any case put on hold while an evidence review was undertaken. This review was not completed until late 2018.

This batch of recently processed proposals includes proposals submitted by Suzy Chapman (since 2014); by Suzy Chapman and Mary Dimmock (March 2017); and by Lily Chu MD on behalf of the IACFS/ME (March 2017).

The proposal submitted by the WHO’s Dr Tarun Dua, in November 2017, to delete Postviral fatigue syndrome from the Diseases of the nervous system chapter and reclassify ME/CFS [sic] in the Symptoms, signs chapter as a child under Symptoms, signs or clinical findings of the musculoskeletal system was processed in November 2018.

The WHO rightly rejected Dr Dua’s proposal, in a decision supported by the MSAC and CSAC Committees.

 

Status of processed proposals at April 15, 2019:

In order to access the ICD-11 Proposal Mechanism registration with the platform is required and the platform is clunky to navigate.

For ease of access, I have created a table which sets out the outcome of these processed proposals for Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic fatigue syndrome; Fatigue; and Bodily distress disorder.

(If you already have v1 or v2 of this document, please replace with v3 below, as this document has been updated to include the approval of an exclusion for PVFS under Fatigue.)

Download PDF Table: Recently processed ICD-11 proposals v3

Extract:

 

 

ICD-11 for Mortality and Morbidity Statistics (Version : 04 / 2019) version for preparing for implementation as it currently stands:

08 Diseases of the nervous system

8E49 Postviral fatigue syndrome

Update on SNOMED CT and Bodily distress disorder

Post #341 Shortlink: https://wp.me/pKrrB-4pG

Update on SNOMED CT terminology system and inclusion of Bodily distress disorder

The July 2017 Release for SNOMED CT International Edition included an undefined Bodily distress disorder term, assigned as a subtype under Parent: Functional disorder.

SNOMED CT does not regulate which concepts should or should not be used in clinical records, but makes concepts available within its system in response to submissions for potential inclusion.

It was possible that the World Health Organization (WHO) had requested the addition of the Bodily distress disorder term for alignment between SNOMED CT and new ICD-11 concept terms [1].

But given the concerns about Bodily distress disorder (BDD) and Bodily distress syndrome (BDS), it was important to establish what the SNOMED International terminology managers understood by the term “BDD” and to also establish who had submitted the request for its addition.

Download a copy of the full update

PDF: Statement on SNOMED CT and Bodily distress disorder


1 Bodily distress disorder, ICD-11 MMS Release June 2018

2 SNOMED CT International Edition Release for July 2018 was published on the public SNOMED CT browser on July 31, 2018

Comparison of SSD, BDD, BDS, BSS in classification systems

Post #338 Shortlink: https://wp.me/pKrrB-4ni

The World Health Organization (WHO) released the next edition of the International Classification of Diseases (ICD-11) on June 18.

WHO news release.

ICD-11 for Mortality and Morbidity Statistics (ICD-11 MMS) version 2018 is an “advance preview” that will allow countries to plan for implementation, prepare translations and begin training health professionals.

No countries will be ready to transition from ICD-10 to ICD-11 for several years. The new edition is scheduled to be presented at the World Health Assembly (WHA) in May 2019 for adoption by Member States, but WHA endorsement won’t come into effect until January 1, 2022.

After that date, Member States can begin using the new edition for data reporting but there is no mandatory implementation date and for a period of time, the WHO will be collecting data recorded using both ICD-10 and the new ICD-11 code sets.

I’ll be posting key links and information on the release of this “advance preview” in future posts. In the meantime, here’s the current schedule:

 

Bodily distress disorder

For the main edition of ICD-11, most of ICD-10’s Somatoform disorders and Neurasthenia have been replaced with a single new diagnostic category called Bodily distress disorder [1].

The Bodily distress disorder term was added to the ICD-11 drafting platform in early 2012 and has been the only disorder construct under consideration for the main edition of ICD-11 [2][3].

 

SSD? BDD? BDS? BSS?

We are still seeing a good deal of confusion between ICD-11’s defining of Bodily distress disorder (BDD) and Per Fink’s Bodily distress syndrome (BDS) disorder construct [4][5].

To assist stakeholders in navigating the complexities of nomenclature and classification, Dx Revision Watch and Mary Dimmock have prepared a document comparing the key features of:

DSM-5’s Somatic symptom disorder (SSD)

ICD-11’s Bodily distress disorder (BDD)

Fink et al. (2010) Bodily distress syndrome (BSD)

Bodily stress syndrome (BSS), as proposed for the ICD-11 PHC

 

You can download a copy of the comparison table and notes, here:

Comparison of SSD, BDD, BDS, BSS in classification systems

Version 1 | July 2018

Download PDF

https://dxrevisionwatch.files.wordpress.com/2018/07/comparison-of-ssd-bdd-bds-bss-in-classification-systems-v1.pdf

 

References:

1 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]

2 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]

3 ICD-11 for Mortality and Morbidity Statistics (ICD-11 MMS) 2018 Release, Version for preparing implementation. Accessed July 20, 2018 https://icd.who.int/browse11/l-m/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f767044268

4 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]

5 Syndromes of bodily distress or functional somatic syndromes – Where are we heading. Lecture on the occasion of receiving the Alison Creed award 2017, Fink, Per. Journal of Psychosomatic Research, Volume 97, 127 – 130
https://www.jpsychores.com/article/S0022-3999(17)30445-2/fulltext
Lecture slides: http://www.eapm2017.com/images/site/abstracts/PLENARY_Prof_FINK.pdf

Why is this proposal for the G93.3 legacy terms for ICD-11 so important?

Post #336 Shortlink: http://wp.me/pKrrB-4hc

A copy of this post in PDF format is available here

1 Why is this proposal for ICD-11 so important?

1.1 The International Statistical Classification of Diseases and Related Health Problems (ICD) is the standard diagnostic classification of diseases for use in epidemiology, health management, clinical practice and reimbursement. ICD-10 has been translated into 43 languages and is used by WHO member states in over 100 countries.

It provides a common language for reporting and monitoring the incidence and prevalence of diseases and other health problems. This allows for global comparison and data sharing in a consistent, standardized way between hospitals, regions and countries and over periods of time.

ICD is used to report and summarize an episode of care after the event. Data recorded on many types of medical information and other records, including death certificates, provides the basis for analyses of national mortality and morbidity statistics by WHO member states, which are used to inform decision-makers and commissioners and to monitor health related spending.

Users include physicians, nurses, allied health care providers, researchers, health information managers and technology workers, coders, policy-makers and insurers [1].

1 World Health Organization

ICD-11 is an electronic product designed to be used in computerized health information systems and will link to other globally used clinical terminology systems, like SNOMED CT.

Inappropriate classification of the G93.3 “legacy” categories for ICD-11 will negatively influence perceptions of the disease and the clinical care that patients receive throughout the world ‒ with implications for service commissioning, the types of medical investigations and treatments that clinicians are prepared to consider and medical insurers prepared to fund, the provision of welfare benefits, social care, disability adaptations, education and workplace accommodations.

It is crucial that international organizations, their clinical and research allies and patient and advocate stakeholders take some time to review our proposal, register with the Beta draft and submit a considered response. Over 45 stakeholder organizations have already commented in support.

1.2 After four years of uncertainty, it’s important that the G93.3 “legacy” terms are included and appropriately classified for the initial 2018 release of ICD-11

Although revision of ICD-10 has been underway since 2007, the work group with responsibility for the G93.3 categories has yet to reach consensus over how these terms should be classified for the new edition. Since early 2013, there have been no proposals in the public version of the ICD-11 Beta draft for stakeholders to review, input into or comment on.

The terms were finally restored to the Beta draft on March 26, but with this caveat: “While the optimal place in the classification is still being identified, the entity has been put back to its original place in ICD.”

Evidently, the work group has not yet reached consensus (or if it has, has not reached consensus with the WHO classification experts and Joint Task Force, to which it reports).

1.3 Why is the timing so critical?

In order to present an initial version of ICD-11 to the World Health Assembly in May 2018, the classification will need to be finalized by the end of this year. For proposals to be considered for inclusion in the 2018 release, they were required to be submitted by a March 30 deadline.

That leaves us with this situation:

  • virtually no information about what the work group might be considering;
  • having missed the March 30 deadline, no indication of whether any proposals that might be released by the work group between now and the end of the year would be included in the initial 2018 release or rolled forward for consideration for inclusion in the 2019 release;
  • if no consensus has been reached before the end of the year, whether the classification would go forward with the “placeholder” listing or whether the terms would be omitted from the initial 2018 release.

Given the uncertainties, it was crucial we submit an alternative option. Stakeholders need to submit comments as soon as possible as it’s not clear whether there is a cut off point for consideration of comments on proposals that met the March 30 deadline.

1.4 Classification is important for protection against misdiagnosis and medical mismanagement

Prior to July 2015 (in the case of SNOMED CT) and prior to April 2016 (in the case of the UK Read Codes CTV3 primary care terminology system) both terminology systems had CFS, ME and their synonym terms dual classified under mental health disorders.

The WHO’s unmodified ICD-10 does not include CFS in the Tabular List, only in the Index. But in the Tabular List, ICD-10 includes several other coded terms which have been misapplied to CFS and ME patients, notably, the various ICD-10 Somatoform disorders categories and Fatigue syndrome, which is coded to Neurasthenia.

Misapplication of these codes has been used to deny patients access to appropriate medical care, to secondary referrals, investigations, emergency treatment, benefits, social care and disability services and in some cases, used to section patients for psychiatric treatment against their will.

Families are still being referred to social services and child protection agencies. Children and young people continue to be removed  from parental care because an existing diagnosis of CFS or ME has been contested or because they have been wrongly diagnosed with “Pervasive refusal syndrome” or as “school refusers,” or their parents accused of “Factitious disorder imposed on another.”

The Somatoform disorders, Neurasthenia and Fatigue syndrome are being replaced for ICD-11 with a new, single “Bodily distress disorder (BDD)” category which is close to the DSM-5 “Somatic symptom disorder (SSD).” BDD poses the same threat to CFS and ME patients as DSM-5’s SSD.

The Netherlands and Germany have witnessed the roll-out of guidelines and services for “MUS” and for “functional somatic syndromes.”

Already in use in Denmark, in clinics and research, Per Fink seeks to colonize Europe with the “Bodily distress syndrome” diagnostic construct, which subsumes and replaces CFS, ME, IBS and FM.

Last year, the Ministry of Science and Research, Hamburg, Germany, provided funding for EURONET-SOMA (European Network to improve diagnosis, treatment and health care for patients with persistent somatic symptoms) comprising a panel of 29 researchers from Denmark, the Netherlands, Sweden, Norway, Latvia, Belgium, United Kingdom, Germany and Russia, to develop a joint research agenda and work towards a common understanding of the terminology, conceptualization and management of “persistent somatic symptoms” and for interdisciplinary agreement on a consistent diagnostic classification.

In the UK, “Medically unexplained symptoms (MUS)” and “Persistent physical symptoms (PPS)” services are proliferating. Funding is being made available for integrated IAPT (Improving Access to Psychological Therapies) services delivering CBT and other therapies for “MUS”; in some cases, bids are being invited specifically for developing IAPT CBT or CBT/GET for CFS patients. One NHS Trust had invited Per Fink and his colleagues over to the UK to train up local GPs in the TERM model.

In at least one part of the country, a specialised CFS service has been decommissioned in order to save money and put out to tender for a combined IAPT type service for CFS and chronic pain.

A new “Joint Commissioning Panel for Mental Health Guidance for commissioners of services for people with medically unexplained symptoms” guideline was published in February, in which CFS and ME are included as “functional somatic syndromes” [2].

2 Guidance for commissioners of services for people with medically unexplained symptoms February 2017

The push to commission “MUS” services is relentless. UK patients have reported having their CFS, ME diagnoses challenged by their practitioners and re-diagnosed with “MUS” or with a mental health disorder.

Patients need protection: the G93.3 “legacy” terms must be appropriately classified for ICD-11; safeguarded with reciprocal exclusions for “Fatigue” and “Bodily distress disorder” and not secondary parented under inappropriate chapters or parent classes
.

Extract from ICD-11 Beta Proposal Q & A Suzy Chapman, April 2017 version 2

Key links

For a summary of our proposal and links for submitting comment via the Beta draft see: A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two

A PDF Q & A for our proposal can be downloaded here

A copy of this post in PDF format is available here

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