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

Australia: Potential adoption of ICD-11: Pre-consultation for decision makers

Post #349 Shortlink: https://wp.me/pKrrB-4Nr

After 11 years in development, the World Health Organization (WHO) released an advance “preview” version of ICD-11 in June 2018 to enable member states and other stakeholders to evaluate the new edition and start the process of planning for potential adoption and implementation.

This “preview” release was replaced with a slightly revised version in December 2018. In April 2019, another release was posted: ICD-11 for Mortality and Morbidity Statistics (Version : 04 / 2019)*

In May, this year, the WHO intends to present the ICD-11 MMS for endorsement at the 72nd World Health Assembly (Geneva, May 22–28, 2019).

If endorsed, the WHA’s endorsement would not take effect until January 2022. After this date, member states can begin using the new edition for reporting. It is anticipated that early implementers will take several years to prepare their countries for transition from ICD-10 to ICD-11.

Delaying the effective endorsement date to January 2022 also allows the WHO additional time for review and revision of implementation and end-user support materials, for preparation of ICD-11’s specialty versions and derivative publications, and to clear a backlog of unprocessed proposals.

England’s NHS Digital has yet to publish a timeline for evaluation and potential implementation of ICD-11.

*Note that the Blue ICD-11 MMS “Version for preparing implementation” does not include the same level of detail that the Orange “Maintenance Platform” contains.

 

Australia: Potential adoption of ICD-11: Pre-consultation for decision makers

The Australian Institute of Health and Welfare (AIHW) is conducting a review of ICD-11 to inform and assist decision-makers about the new edition and its potential for adoption in Australia.

Flyer

Extracts:

The World Health Organization’s International Classification of Diseases, Tenth Revision (ICD-10) is used to standardise the way we report causes of death across the world. Australia uses ICD-10 for coding mortality (cause of death) and ICD-10-AM for coding of diseases and related health problems in hospitals (morbidity). The WHO’s Eleventh Revision of ICD (ICD-11) brings the reporting of mortality and morbidity into one classification.

Countries have been given a version of ICD-11 to start looking at how it might be implemented for reporting. The WHO anticipates that ICD-11 will be presented to the World Health Assembly (the decision-making group of WHO) in May 2019 which will pave the way for countries to begin the adoption of ICD-11.

ICD-11 Review for Australia

The Australian Institute of Health and Welfare (AIHW) is conducting a review of ICD-11 to inform and assist decision-makers about ICD-11 and its potential for adoption in Australia.

The AIHW is designated as the Australian Collaborating Centre (ACC) for the WHO’s Family of International Classifications. The membership of the ACC is Australian and New Zealand organisations that have an interest and experience in working with health classifications. The work of the ACC has contributed to the development of ICD-11.

Contribute to the Review

If you have comments about the potential adoption of ICD-11 in Australia please contact the AIHW project team: Email: who-fic-acc@aihw.gov.au

 

Pre-Consultation document

Extracts:

ICD-11 was released by the WHO in an advanced ‘preview’ version in June 2018 and is expected to be formally presented to the Seventy-second World Health Assembly in May 2019 for official endorsement by Member States.

If endorsed, ICD-11 will then be available for implementation by Member States and there is an expectation by the WHO that its Member States will take steps to begin using ICD-11 in some capacity, whether that be exclusively for mortality purposes or for more broader application in morbidity systems and beyond.

The Australian Institute of Health and Welfare (AIHW) is conducting a review of ICD-11 to inform and assist decision-makers about ICD-11 and its potential for adoption in Australia.

The aim of stakeholder consultation is to identify all issues relevant to a potential adoption of ICD-11 so that, if and when, Australia decides to adopt ICD-11 it can start to ready its relevant systems, processes and people for implementation in some capacity.

A decision to adopt and implement ICD-11 would require a detailed understanding of the stakeholders impacted, the resources needed, the time frames required, and the impact on existing workforces.

The WHO has ceased to update ICD-10 and this will, over time, result in ICD-10 and ICD-10-AM becoming out of date. However, a decision to adopt ICD-11 for use in Australia has not yet been made. A lot of research and consultation will need to be undertaken before such a decision could be made and this may take several years. In addition, it is anticipated that several years lead time will be required for implementation of ICD-11 once a decision is made to implement.

 

See full document for stakeholder questions for decision-makers.

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?

 

World Health Organization finally releases next edition of the International Classification of Diseases (ICD-11)

Post #339 Shortlink: https://wp.me/pKrrB-4nC

(Key links from this post are also available on the ICD-11 2018 tab page.)

After 11 years in development and four extensions to the timeline, the World Health Organization (WHO) finally released a version of ICD-11 on June 18th.

Advanced preview

The WHO is presenting this June release as an “advance preview” to enable countries to start planning for implementation, prepare national translations and begin training health professionals.

ICD-11 MMS is scheduled for presentation 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 — if they are ready.

The WHO has bought itself a further three and half years in which to complete the preparation of implementation and support materials and finalize companion publications and other derivatives.

Dr Christopher Chute, chair of ICD-11’s Medical and Scientific Advisory Committee (MSAC), predicts that early implementers may require around five years to prepare their countries’ health systems for transition. Member states using a “clinical modification” of ICD are likely to take longer to develop, test and roll out a country specific adaptation.

There is no mandatory implementation date — member states will migrate to ICD-11 at their own pace and according to their countries’ specific timelines, requirements and resources.

Global adoption will likely be a patchy and prolonged process and for a period of time, WHO will be accepting data recorded using both ICD-10 and the new ICD-11 code sets.

No countries have announced implementation schedules. NHS Digital says:

NHS Digital – ICD-11 Launch

“…No decision has been made for the implementation of ICD-11 in England, however NHS Digital plan to undertake further testing of the latest release and supporting products that will inform a future decision.”

In the meantime, the mandatory classification and terminology systems for use in the NHS are ICD-10* and SNOMED CT UK Edition**.

*NHS currently mandating ICD-10 Version: 2015.
**Read Codes (CTV-2 and CTV-3) are retired. SNOMED CT became the mandatory terminology system for use in NHS primary care in April 2018. Secondary Care, Acute Care, Mental Health, Community systems, Dentistry and other systems used in the direct management of care of an individual are scheduled to adopt SNOMED CT as the mandatory clinical terminology before 1 April 2020.

Key links

ICD-11 launch News Release

Launch information and short videos: ICD-11: Classifying disease to map the way we live and die

A dedicated website for ICD-11 information has been launched: https://icd.who.int

ICD-11 Beta Draft becomes ICD-11 Maintenance Platform

The orange ICD-11 Beta drafting platform is renamed to the “ICD-11 Maintenance Platform” and will remain in the public domain as a “work in progress” between stable releases.

The content on the orange platform will change as the substantial backlog of earlier proposals and new proposals submitted since the June 2018 release are processed.

An approved proposal for an addition or other change won’t immediately be reflected in the released version of the ICD-11 MMS but carried forward for eventual incorporation into a later release, according to the update cycle for that particular class of change.

There is a current backlog of over 1000 proposals waiting to be processed. New comments and proposals will continue to be accepted (see Annex 3.7 of the Reference Guide for maintenance and update schedules and guidance on submitting new proposals).

(If you were registered with the Beta drafting platform for access to the Comments function and Proposals Mechanism your account will work for the Maintenance Platform and you will be able to access historical comments and proposals.)

The maintenance and update of ICD-11 will be advised by the Classifications and Statistics Advisory Commitee (CSAC); the Medical and Scientific Advisory Committee (MSAC); the Mortality Reference Group; the Morbidity Reference Group; and the Functioning and Disability Reference Group.

It is currently unclear in which year the first update cycle is anticipated to start, i.e., whether the next stable version would be released in January 2020, or in a later year.

The ICD Revision Topic Advisory Groups and sub working groups ceased operations in October 2016 and the Joint Task Force is expected to be stood down later this year.

The ICD-11 Maintenance Platform displays both the Foundation Component and the combined Mortality and Morbidity Statistics linearization:

https://icd.who.int/dev11/f/en#/

The ICD-11 for Mortality and Morbidity Statistics (ICD-11 MMS) 2018 version is on a new blue platform:

https://icd.who.int/browse11/l-m/en

This platform currently displays only the MMS Linearization codes, not the Foundation Component which contains all the ICD entities. As released in June 2018, the content is planned to remain stable until January 2019, in preparation for presentation at the May 2019 World Health Assembly.

There is a coding tool here:

ICD-11 Coding Tool Mortality and Morbidity Statistics (MMS) 2018:

https://icd.who.int/ct11_2018/icd11_mms/en/release#/

The ICD-11 Reference Guide (the equivalent of ICD-10’s Volume 2) is here:

https://icd.who.int/browse11/content/refguide.ICD11_en/html/index.html

(At the time of publication, there is no PDF version of the Reference Guide only an html version.)

What hasn’t been released yet?

Not all disorder “Descriptions” texts and other “Content Model” parameters have been populated and the full ICD-11 implementation package isn’t completed.

An updated ICD Revision information page states: “A suite of tools and functionality facilitate implementation and use of ICD-11.” But not all the tools and other materials listed under the Implementation Support tab are currently available.

The list also mentions “Specialty versions” but none of these are available; for example, the ICD-11 Clinical descriptions and diagnostic guidelines for Mental and Behavioural Disorders (the equivalent to ICD-10’s “Blue Book”) hasn’t been released yet.

This companion publication provides expanded clinical descriptions, differential diagnoses, diagnostic guidelines and codes for the categories in Chapter 06: Mental, behavioural and neurodevelopmental disorders including: “Essential (Required) Features, Boundaries with Other Disorders and Normality, and Additional Features sections. Additional sections (e.g., Culture-Related Features).”

Practitioners who have signed up to the Global Clinical Practice Network have had the opportunity to review and comment on drafts of the full clinical description and diagnostic guideline texts but drafts have not been available for public stakeholder review.

It’s not known whether this specialty mental disorder publication is planned to be released later this year or if the content cannot be finalized until after the ICD-11 MMS code sets have been ratified, in May 2019.

ICD-11 PHC: the revision of the 1996 publication: Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version (aka “ICD-10 PHC”) has not been released, either.

Drafts of the full texts for the disorder descriptions, as currently proposed for the 27 mental disorders for inclusion in ICD-11 PHC, are not available for public stakeholder scrutiny. There is no publicly available timeline for the finalization and release of ICD-11 PHC nor is it clear whether any additional field trials are in progress or have been recommended. NB: This publication will not be mandatory for use by WHO member states and it does not override the ICD-10 and ICD-11 code sets.

Additional materials

Brief Report from the Director-General: World Health Organization, EXECUTIVE BOARD EB143/13, 143rd session April 9, 2018, Provisional agenda item 5.2: International Statistical Classification of Diseases and Related Health Problems: update on the eleventh revision: http://apps.who.int/gb/ebwha/pdf_files/EB143/B143_13-en.pdf

Presentation Slides: ICD 11th revision, Member State Information Session Geneva, May 14, 2018, Dr John Grove, Director, Department of Information, Evidence, and Research, WHO and Dr Robert Jakob, Team Lead, Classifications, Terminologies and Standards, WHO https://dxrevisionwatch.files.wordpress.com/2018/05/icd11.pdf

Audio file from WHO Press Conference: June 14, 2018, Release of ICD-11 – the 11th revision of the International Classification of Disease, Dr Shekhar Saxena, Director, Department for Mental Health and Substance Abuse, WHO, Dr Robert Jakob, Team Lead, Classifications, Terminologies and Standards, WHO

Mp3 audio file [39:25 min]:

 

Presentation by Dr Michael First: Differences Between ICD-11 Classification of Mental & Behavioural Disorders and DSM-5. Nasjonal kompetansetjeneste ROP, Published July 20, 2018 [32:38 mins]

https://rop.no/roptv/hva-er-forskjellene-mellom-psykiske-lidelser-i-icd-11-og-dsm-5/

ICD-11 Beta draft: Rationale for Proposal for Deletion of proposed new category: Bodily distress disorder

Post #328 Shortlink: http://wp.me/pKrrB-4dc

View on ICD-11 Proposal Mechanism: https://tinyurl.com/submissionDeleteBDD

(Registration with the Beta draft required in order to view proposals via the Beta draft Proposal Mechanism.)

PDF: ICD-11 Bodily distress disorder submission

Proposal submitted by Suzy Chapman (Dx Revision Watch) via ICD-11 Beta draft Proposal Mechanism

Submitted: March 1, 2017 (Remains unprocessed)

The author has no affiliations or conflicts of interest to declare.

Rationale for Proposal for Deletion of the Entity: Bodily distress disorder

1: The acronym “BDD” is already in use to indicate Body Dysmorphic Disorder [1].

2: With limited field studies, there is currently no substantial body of evidence for the validity, reliability, utility, prevalence, safety and acceptability of the S3DWG’s proposed disorder construct. However, the focus of this rationale is the proposed nomenclature.

The Somatic Distress and Dissociative Disorders Working Group (S3DWG) proposes to name its construct, “bodily distress disorder (BDD)” – a term that is already used by researchers and in the field interchangeably with the disorder term, “bodily distress syndrome (BDS).”

“Bodily distress syndrome” is a conceptually divergent disorder construct: differently defined and characterized, with different criteria that are already operationalized in Denmark and beyond, in research and clinical settings, and which potentially include a different patient set to that described in the S3DWG’s proposal [2].

As defined for the ICD-11 core version, the S3DWG’s “bodily distress disorder” construct has stronger conceptual and characterization alignment with DSM-5 “somatic symptom disorder (SSD)” than with Fink et al. (2010) “bodily distress syndrome” [3][4].

It is noted that “Somatic symptom disorder” is listed under Synonyms for the BDD entry in the ICD-11 Beta draft.

The defining feature of both the S3DWG’s “bodily distress disorder” and DSM-5 “somatic symptom disorder” is the removal of the distinction between “medically explained” and “medically unexplained” somatic complaints. Rather than define the disorder on the basis of the absence of a known medical cause, instead, specific psychological features are required in order to fulfill the criteria.

The S3DWG’s BDD is characterized by “the presence of bodily symptoms that are distressing to the individual and excessive attention directed toward the symptoms which may be manifest by repeated contact with health care providers.”

“Excessive attention is not alleviated by appropriate clinical examination and investigations and appropriate reassurance.”

“If a medical condition is causing or contributing to the symptoms, the degree of attention is clearly excessive in relation to its nature and progression.”

“Bodily symptoms and associated distress are persistent, being present on most days for at least several months and are associated with significant impairment in personal, family, social, educational, occupational or other important areas of functioning.”

The S3DWG’s “bodily distress disorder” may involve a single unspecified somatic symptom or multiple unspecified symptoms that may vary over time, in association with the disorder’s other defining features.

For DSM-5 “somatic symptom disorder,” the centrality of medically unexplained symptoms in order to meet the criteria is similarly de-emphasized and replaced by psychological responses to distressing, persistent symptoms: “excessive thoughts, behaviours and feelings” or “excessive preoccupation” with the bodily symptom or associated health concerns [5].

As with BDD, for SSD, the symptoms may or may not be associated with another medical condition. Some patients with general medical diagnoses, such as cancer, cardiovascular disease or diabetes, or patients diagnosed with the so-called “functional somatic syndromes” may qualify for a diagnosis of SSD if they are perceived as experiencing disproportionate and excessive thoughts and feelings or using maladaptive coping strategies in response to their illness, despite the reassurance of their clinicians [6].

As with the S3DWG’s defining of BDD, for SSD, there is no requirement for a specific number of complaints from among specified symptom groups to meet the criteria: so no symptoms counts or symptom clusters from body systems required for either.

To meet the SSD criteria: at least one symptom of at least six months duration and at least one of three psychological criteria are required: disproportionate thoughts about the seriousness of the symptom(s); or a high level of health anxiety; or devoting excessive time and energy to symptoms or health concerns; and for the symptoms to be significantly distressing or disruptive to daily life.

Though they differ somewhat in the characterization of their severity specifiers, the S3DWG’s defining of BDD and DSM-5 SSD may be considered essentially similar in conceptualization: no distinction between “medically explained” and “medically unexplained”; a much simplified criteria set to those defining the somatoform disorders, based on “excessive” or “disproportionate” psychological responses to persistent distressing symptoms, and with significant impairment or disruption to functioning.

Whereas, for the Fink et al. (2010) “bodily distress syndrome (BDS),” psychological or behavioural characteristics are not part of the criteria: symptom patterns or clusters from organ/body systems (cardiopulmonary; gastrointestinal; musculoskeletal or general symptoms) are central [2]. The diagnosis is exclusively made on the basis of the somatic symptoms, their complexity and duration, with moderate to severe impairment of daily life. There is a “Moderate: single organ” type and a “Severe: multi-organ” type.

The Fink et al. (2010) BDS construct is considered by its authors to have the ability to capture the somatoform disorders, neurasthenia, “functional symptoms” and the so-called “functional somatic syndromes” under a single, unifying disorder construct which subsumes CFS, ME, fibromyalgia and IBS (which are discretely classified within other chapters of ICD-10), noncardiac chest pain, chronic pain disorder, MCS and some others [7][8][9].

(The various so-called specialty “functional somatic syndromes” are considered by the authors to be an artifact of medical specialization and manifestations of a similar, underlying disorder with a common, hypothesized aetiology.)

Contrast this with the S3DWG’s BDD construct, which makes no assumptions about aetiology and does not exclude symptoms associated with general medical conditions; whereas, for Fink et al. BDS, “If the symptoms are better explained by another disease, they cannot be labelled BDS.”

That DSM-5 SSD and Fink et al. (2010) BDS are differently conceptualized, with different criteria sets, potentially capturing different patient populations has been acknowledged by SSD work group chair, Joel E Dimsdale, and by Fink, Henningsen and Creed [10][11]. In the literature, however, one observes frequent instances where the term “bodily distress disorder” has been used when what is actually being discussed within the paper or editorial is the Fink et al. (2010) “bodily distress syndrome (BDS)” disorder construct.

For example, “bodily distress disorder” is used interchangeably with “bodily distress syndrome” in the editorial (Creed et al. 2010): Is there a better term than “medically unexplained symptoms”? [1].

In this (Rief and Isaac 2014) editorial: The future of somatoform disorders: somatic symptom disorder, bodily distress disorder or functional syndromes? the authors are using the term, “bodily distress disorder” while clearly discussing the Fink et al. (2010) BDS construct [12].

The S3DWG’s proposed term is seen, here, as “Bodily distress disorder (Fink and Schroder 2010)” in Slide #3 of the symposium presentation: An introduction to “medically unexplained” persistent physical symptoms. (Professor Trudie Chalder, Department of Psychological Medicine, King’s Health Partners, 2014) [13].

This recent paper: Medium- and long-term prognostic validity of competing classification proposals for the former somatoform disorders (Schumacher et al. 2017) compares prognostic validity of DSM-5 “somatic symptom disorder (SSD)” with “bodily distress disorder (BDD)” and “polysymptomatic distress disorder (PSDD)” and discusses their potential as alternatives to SSD for the replacement of the somatoform disorders for the forthcoming ICD-11 [14].

The authors state, “the current draft of the WHO group is based on the BDD proposal.” But the authors have confirmed that for their study, they had operationalized “Bodily distress disorder based on Fink et al. 2007” [15].

In the (Fink et al. 2007) paper: Symptoms and syndromes of bodily distress: an exploratory study of 978 internal medical, neurological, and primary care patients, the authors conclude: “We identified a general, distinct, bodily distress syndrome or disorder that seems to encompass the various functional syndromes advanced by different medical specialties as well as somatization disorder and related diagnoses of the psychiatric classification.”

There are other examples in the literature and in the field. But these suffice to demonstrate that the term, “bodily distress disorder” is already used synonymously with disorder term “bodily distress syndrome (BDS)” and that researchers/clinicians, including Fink et al., do not differentiate between the two.

If researchers/clinicians do not differentiate between “bodily distress syndrome” and “bodily distress disorder” (and in some cases, one observes the conflations, “bodily distress syndrome or disorder” and “bodily distress syndrome/disorder”), has the S3DWG considered the difficulties and implications for maintaining the discrete identity of its proposed disorder, once ICD-11 is in the hands of its end users – clinicians, allied health professionals and coders; or considered the implications for patients and the particular vulnerability of those diagnosed with one of the so-called, “functional somatic syndromes”; or the implications for data reporting and analysis?

The S3DWG presented its emerging proposals for subsuming most of the ICD-10 somatoform disorder categories between F45.0 – F45.9, and F48.0 Neurasthenia, under a new single category which it proposes to call “bodily distress disorder (BDD)” in 2012 [3] and again in 2016 [4].

Thus far, the S3DWG has published no rationale for its recommendation to repurpose a disorder term already strongly associated with the Fink et al. (2010) disorder construct.

Neither has the group discussed nor acknowledged within its papers the implications for confusion and conflation between its own SSD- like “BDD” construct and the Fink et al. “bodily distress syndrome (BDS).”

Nor has the group’s output discussed the potential difficulties and implications for maintaining construct integrity within and beyond ICD-11.

There is no justification for introducing a new disorder category into ICD-11 that has greater conceptual alignment with the DSM-5 SSD construct but is proposed to be assigned a disorder name that is closely associated with a divergent (and operationalized) construct/criteria set, that is already in use in research and clinical settings.

This is unsafe and unsound classificatory practice.

This proposed disorder name should be rejected by the Project Lead for the revision of the Mental or behavioural disorders chapter and by the Joint Task Force that is overseeing the finalization of ICD-11 MMS.

If the S3DWG is unprepared or unwilling to reconsider and recommend an alternative disorder name then I submit that the current proposal to replace the somatoform disorders with a single “bodily distress disorder” category should be abandoned.

ICD-11 should proceed with the ICD-10 status quo, or retire or deprecate the somatoform disorder categories for the next edition.

It is perhaps germane that in 2010, three years prior to the finalization of DSM-5, Creed et al. had advanced: “Somatic symptom disorder is not a term that is likely to be embraced enthusiastically by doctors or patients; it has an uncertain core concept, dubious wide acceptability across cultures and does not promote multidisciplinary treatment. In our discussion, the terms which fit most closely the criteria we have set out above were the following: bodily distress (or stress) syndrome/ disorder, psychosomatic or psychophysical disorder, functional (somatic) syndrome or disorder.” [1]

The authors conclude that “bodily distress disorder” best fitted their “Criteria to judge the value of alternative terms for ‘medically unexplained symptoms.'”

It would appear that the term “bodily distress disorder” can mean anything anyone chooses it to mean – which might be admissible for Humpty Dumpty but unsound classificatory practice for ICD-11 [16].

References:

1 Creed F, Guthrie E, Fink P, Henningsen P, Rief W, Sharpe M, White P. Is there a better term than “medically unexplained symptoms”? J Psychosom Res. 2010 Jan;68(1):5-8. doi:10.1016/j.jpsychores.2009.09.004. [PMID: 20004295]

2 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]

3 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]

4 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]

5 American Psychiatric Association. (2013). Somatic Symptom and Related Disorders. In Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: Author.

6 Frances A, Chapman S. DSM-5 somatic symptom disorder mislabels medical illness as mental disorder. Aust N Z J Psychiatry. 2013 May;47(5):483-4. [PMID: 23653063]

7 Lam TP, Goldberg DP, Dowell AC, Fortes S, Mbatia JK, Minhas FA, Klinkman MS. Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. Fam Pract. 2013 Feb;30(1):76-87. doi: 10.1093/fampra/cms037. Epub 2012 Jul 28. [PMID: 22843638]

8 Ivbijaro G, Goldberg D. Bodily distress syndrome (BDS): the evolution from medically unexplained symptoms (MUS). Ment Health Fam Med. 2013 Jun;10(2):63-4. [PMID: 24427171]

9 Goldberg DP, Reed GM, Robles R, Bobes J, Iglesias C, Fortes S, de Jesus Mari J, Lam TP, Minhas F, Razzaque B et al. Multiple somatic symptoms in primary care: A field study for ICD-11 PHC, WHO’s revised classification of mental disorders in primary care settings. J Psychosom Res. 2016 Dec;91:48-54. doi:10.1016/j.jpsychores.2016.10.002. Epub 2016 Oct 4. [PMID: 27894462]

10 Medically Unexplained Symptoms, Somatisation and Bodily Distress: Developing Better Clinical Services, Francis Creed, Peter Henningsen, Per Fink (Eds), Cambridge University Press, 2011.

11 Frances Creed and Per Fink. Presentations, Research Clinic for Functional Disorders Symposium, Aarhus University Hospital, May 15, 2014.

12 Rief W, Isaac M. The future of somatoform disorders: somatic symptom disorder, bodily distress disorder or functional syndromes? Curr Opin Psychiatry September 2014 – Volume 27 – Issue 5 – p315–319. [PMID: 25023885]

13 Chalder, T. An introduction to “medically unexplained” persistent physical symptoms. Presentation, Department of Psychological Medicine, King’s Health Partners, 2014. [Accessed 27 February 2017]

14 Schumacher S, Rief W, Klaus K, Brähler E, Mewes R. Medium- and long-term prognostic validity of competing classification proposals for the former somatoform disorders. Psychol Med. 2017 Feb 9:1-14. doi: 10.1017/S0033291717000149. [PMID: 28179046]

15 Fink P, Toft T, Hansen MS, Ornbol E, Olesen F. Symptoms and syndromes of bodily distress: an exploratory study of 978 internal medical, neurological, and primary care patients. Psychosom Med. 2007 Jan;69(1):30-9. [PMID: 17244846]

16 Carroll L. Alice’s Adventures in Wonderland. 1885. Macmillan.

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