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

Draft Resolution for recommendation of adoption and endorsement of ICD-11 at May 2019 World Health Assembly

Post #351 Shortlink: https://wp.me/pKrrB-4OJ

An update on World Health Organization (WHO) Executive Board and World Health Assembly (WHA) business:

The 144th Session (EB144) of the World Health Organization Executive Board took place in Geneva between 24 January — 1 February 2019.

Executive Board 144th Session website

“The Executive Board is composed of 34 individuals technically qualified in the field of health, each one designated by a Member State elected to do so by the World Health Assembly. Member States are elected for three-year terms.

“The Board meets at least twice a year; the main meeting is normally in January, with a second shorter meeting in May, immediately after the Health Assembly. The main functions of the Executive Board are to give effect to the decisions and policies of the Health Assembly, to advise it and generally to facilitate its work.”

These January Executive Board meetings generate a considerable number of documents. Documentation is available from this page EB144 Meeting Documents.

Key document for Recommendation for Adoption of ICD-11 at WHA72:

World Health Organization, EXECUTIVE BOARD 144th Session

Provisional agenda item 5.9

EB144/22 12 December 2018

Eleventh revision of the International Classification of Diseases

Report by the Director-General

On p10 (Item 53), the Executive Board was invited to consider a draft resolution.

Below is the document containing the text of the draft resolution with proposed amendments from Member States inserted in bold text:

World Health Organization, EXECUTIVE BOARD 144th Session

Agenda item 5.9

EB144/CONF./9 31 January 2019

Eleventh revision of the International Classification of Diseases

Draft resolution proposed by the Secretariat with amendments from Member States

World Health Assembly

The 72nd World Health Assembly takes place this month, in Geneva, from 20 — 28 May 2019.

“The World Health Assembly is the decision-making body of WHO. It is attended by delegations from all WHO Member States and focuses on a specific health agenda prepared by the Executive Board. The main functions of the World Health Assembly are to determine the policies of the Organization, appoint the Director-General, supervise financial policies, and review and approve the proposed programme budget. The Health Assembly is held annually in Geneva, Switzerland.”

72nd World Health Assembly (WHA72)

Documentation page for WHA72

Two key documents for Recommendation for Adoption of ICD-11 at WHA72:

WHO SEVENTY-SECOND WORLD HEALTH ASSEMBLY

Provisional agenda item 12.7 

A72/29 4 April 2019

Eleventh revision of the International Classification of Diseases

Report by the Director-General

Extract:

“1. The Executive Board at its 144th session considered an earlier version of this report,¹ containing a draft resolution.² The Board noted the report but agreed to suspend consideration of the draft resolution so that informal consultations could be held during the intersessional period prior to the Seventy-second World Health Assembly. A separate report will be submitted to provide details of the outcome of the consultations.³”


1 Document EB144/22.
2 See the summary records of the Executive Board at its 144th session, eleventh meeting and twelfth meeting, section 1.
3 Document A72/29 Add.1.

and the revised Draft Resolution on ICD-11:

Provisional agenda item 12.7 

A72/29 Add.111 April 2019

Extract:

“1. In line with the course of action agreed by the Executive Board at its 144th session in January 2019,¹ the Secretariat convened informal consultations during the intersessional period in respect of a draft resolution on the eleventh revision of the International Classification of Diseases. The consultations took place in Geneva on 22 February, 7 March and 21 March 2019. The three sessions enabled the draft resolution to be revised.”


1 Document A72/29.

Should any additional documents relating to the presentation of ICD-11 for recommendation for adoption be posted on the WHA72 documents page I will update this post.

The most recent release of the ICD-11 MMS version for preparation for implementation, Coding tool, Reference Guide and additional materials can be viewed here:

ICD-11 for Mortality and Morbidity Statistics (Version : 04 / 2019)

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

 

Information session on ICD-11 slides

Document EB144/22 (Report by the Director-General) included a link for slides from a presentation given by Dr Robert Jakob, Team Leader, WHO, Geneva, Classifications, Terminologies and Standards:

Presentation slides (Dr Robert Jakob, November 2018):

Information session on ICD-11

I have been unable to find a transcript or video for this presentation. The slides include an overview of the structure of ICD-11, timelines for preparation for adoption, overview of proposed draft resolution, implementation package, post-endorsement maintenance and update process etc.

Slide 20/31:

Slide #22 notes outcomes of several CSAC and MSAC reviews and decisions, including the decision in November 2018 to retain the ICD-10 G93.3 entities (Postviral fatigue syndrome; Benign myalgic encephalomyelitis; Chronic fatigue syndrome) in the Diseases of the nervous system chapter [1][2]:

Slide 22/31:

References:

1 ICD-11 proposal submitted by Dr Tarun Dua on November 06, 2017; Processed on November 19, 2018

2 WHO’s rejection of Dr Tarun Dua’s proposal of November 06, 2017

3 For status of proposals for PVFS, BME and CFS see Post #350: ICD-11: Recently processed proposals for Postviral fatigue syndrome, ME, CFS; Fatigue; and Bodily distress disorder

and PDF: Recently processed ICD-11 proposals v3

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

NICE CFS/ME consultation draft 29 September – 24 November 2006 Comments from stakeholders

Post #347 Shortlink: https://wp.me/pKrrB-4KP

Archived material

Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management

Clinical guideline [CG53] Published date: August 2007

 

NICE CFS/ME consultation draft 29 September – 24 November 2006 Comments from stakeholders

 

Stakeholder List: Stakeholders_CFSME

Comments on NICE version (in alphabetical order of stakeholder 575 pp): nice-version-table-of-comments2

Comments on NICE version  (in alphabetical order of stakeholder 220 pp): NICEversion-tableofcomments

General comments from stakeholders (in alphabetical order of stakeholder 224 pp): General-tableofcomments

Comments on Chapter 1 (in alphabetical order of stakeholder 152 pp): Chapter1-tableofcomments

Comments on Chapter 2 (in alphabetical order of stakeholder 34 pp): Chapter2-tableofcomments

Comments on Chapter 3 (in alphabetical order of stakeholder 18 pp): Chapter3-tableofcomments

Comments on Chapter 4 (in alphabetical order of stakeholder 28 pp): Chapter4-tableofcomments

Comments on Chapter 5 (in alphabetical order of stakeholder 103 pp): Chapter5-tableofcomments

Comments on Chapter 6 (in alphabetical order of stakeholder 171 pp): Chapter6-tableofcomments

Comments on Chapter 7 (in alphabetical order of stakeholder 25 pp): Chapter7-tableofcomments

Comments on the Appendices (in alphabetical order of stakeholder 13 pp): Appendices-tableofcomments

 

These files and additional materials from the development process for the CG53 2007 can be found on the NICE History pages for the 2007 guideline:

https://www.nice.org.uk/guidance/cg53/history

 

A selection of points the Barts CF Service made during the NICE Guidelines for CFS/ME extracted by Tom Kindlon in 2007 can be found at this post on ME agenda site:

https://meagenda.wordpress.com/2007/09/06/a-selection-of-points-the-barts-cf-service-made-during-the-nice-guidelines-for-cfs-me-tom-kindlon/

 

Comparison of Classification and Terminology Systems

Post #340 Shortlink: https://wp.me/pKrrB-4oG

We continue to see some confusion amongst ME and CFS patients, advocates and commentators around classification systems — what they are used for, whether they are mandatory for WHO member states, which terms are included in which systems and which countries use which versions.

In May, Suzy Chapman (DxRevisionWatch.com) and Mary Dimmock prepared a document to assist stakeholders in navigating the complexities of the disease classification and terminology systems.

 

Comparison of Classification and Terminology Systems

The purpose of this document is to summarize the key classification and terminology systems that are used internationally to capture information about disorders and diseases for the purposes of global mortality and morbidity tracking. These systems are also used for medical records, including EMRs (electronic medical records), in primary and secondary care.

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The most recent version of this document can be downloaded here Version 3 | July 2018

 

Document revision history:

Comparison of Classification and Terminology Systems Version 1

May 2018


 

Comparison of Classification and Terminology Systems Version 2

June 2018 – Updated to reflect release of an advance preview version of ICD-11 on June 18, 2018.


 

Comparison of Classification and Terminology Systems Version 3

July 2018 – Revised for clarity.

In Versions 1 and 2, we stated that the ICPC-2 Danish extension [1] included the term, Bodily distress syndrome. The document in reference [2] clarifies that whilst not included in the Danish extension, a diagnosis of functional disorder or a diagnosis of bodily distress syndrome can be coded for using the ICPC-2 P75 Somatoform forstyrrelse (Somatoform disorder) term.

1 ICPC-2 Danish extension
2 Funktionelle lidelser (Functional Disorders), Clinical guideline for general practice, Danish College of General Practitioners, 2013 (English translation, 2016). Page 8: What is the patient’s illness called?

 

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