New: Online ICD-10 Version for 2010

October 21, 2011 by

New: Online ICD-10 Version for 2010

Post #106 Shortlink: http://wp.me/pKrrB-1jm

The information in this report refers only to the existing international WHO ICD-10 and not to the forthcoming ICD-11 or to any country specific, clinical modification of ICD-10.

New: Online ICD-10 Version for 2010

I reported some months ago that according to documentation from WHO-FIC meeting materials, it was understood that a version of ICD-10 for 2010 was planned to be published online by WHO, Geneva, earlier this year.

This would replace the ICD-10 online version for 2007 and incorporate all the annual updates to ICD-10 from 2007 to 2010.

This is now up online.

A searchable version of ICD-10 for 2010 is available at this URL:

http://apps.who.int/classifications/icd10/browse/2010/en

International Statistical Classification of Diseases and Related Health Problems 10th Revision

It is presented on a platform similar to the platform being used for the ICD-11 Alpha Draft, that is, a list of ICD-10 Chapters on the left side of the screen, arranged with hierarchical parent > child categories, with the category codings set out on the right side of the screen.

This is the URL for ICD Title term G93.3 Postviral fatigue syndrome:

http://apps.who.int/classifications/icd10/browse/2010/en#/G93.3

If “Chronic fatigue syndrome” is entered into the Search box, a drop down reads:

“Syndrome – fatigue – chronic – G93.3”

(Which is the way it is set out in Volume 3 The Alphabetical Index.)

Mouse hover over the orange square on the left of the dark blue drop down and the “Alt text” reads:

“Found in Index”

There is a User Guide for ICD-10 Version: 2010 but the platform is not difficult to navigate, just select a chapter and click on the little grey arrows to display parent class and Title term categories and their child categories – you can’t break anything:

http://apps.who.int/classifications/icd10/browse/Help

Those of us with websites that have URLs pointing to specific ICD-10 version for 2007 categories will need to adjust URLs for the new platform, as code specific URLs are pointing only to the ICD-10 Version: 2010 opening page, for example:

what displayed in ICD-10 version for 2007 at this path:

http://apps.who.int/classifications/apps/icd/icd10online/?gg90.htm+g933

would need updating to:

http://apps.who.int/classifications/icd10/browse/2010/en#/G93.3

and the Chapter V entry for the F40-48 categories:

http://www.who.int/classifications/apps/icd/icd10online/?gf40.htm+f480

would need updating to:

http://apps.who.int/classifications/icd10/browse/2010/en#/F40-F48

or

http://apps.who.int/classifications/icd10/browse/2010/en#/F45.0

to point to F45 Somatoform Disorders

or

http://apps.who.int/classifications/icd10/browse/2010/en#/F48.0

to point to F48.0 Neurasthenia.

Compiled by Suzy Chapman


Filed under Clinical Modification, iCAT, ICD-10, ICD-10-CM, ICD-11, ICD-11 Alpha Draft, ICD-11 Beta Draft, Somatoform Disorders, WHO (World Health Organization)

Minutes of May 10-11 2011 CFSAC meeting (Discussion of coding of CFS for ICD-10-CM)

October 18, 2011 by

Minutes of May 10-11 2011 CFSAC meeting (Discussion of coding of CFS for ICD-10-CM)

Post #100 Shortlink: http://wp.me/pKrrB-1gv

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS). These include:

• factors affecting access and care for persons with CFS;

• the science and definition of CFS; and

• broader public health, clinical, research and educational issues related to CFS.

Administrative and management support for CFSAC activities is provided by the Office of the Assistant Secretary for Health (OASH). However, staffing will continue to be provided primarily from the Office on Women’s Health, which is part of OASH.

Dr. Nancy C. Lee, Deputy Assistant Secretary for Health – Women’s Health, is the Designated Federal Officer for CFSAC.

The Spring meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) was held on May 10-11, 2011 in Room 800, Hubert H. Humphrey Building, 200 Independence Ave, S.W., Washington, D.C.

The Fall meeting has been announced for Tuesday, November 8 and Wednesday, November 9 but will be located in a different venue. The November meeting will be hosted at the Holiday Inn Capitol, Columbia Room, 550 C Street, SW., Washington, D.C. See next post for Federal Notice. At the time of publication, no agenda for the Fall meeting has been issued.

Minutes Day One and Two Spring 2011 meeting from this page: Minutes May 10-11 CFSAC

Presentations Day One and Two: Presentations and Meeting Materials

Public and Written Testimonies here: Public Testimonies

Recommendations approved from Spring meeting: Recommendations CFSAC May 10-11

Videocasts of the entire two day proceedings can be viewed here: Videocasts Day One and Two

Current Roster     CFSAC Charter

 

Discussion of ICD-10-CM and DSM-5 at the May CFSAC meeting

Of particular interest to the scope of this site was the Agenda item on Day One at 1:15 p.m.

Discussion of International Classification of Diseases-Clinical Modification (ICD-CM) concerns
Committee Members

Dr Wanda Jones, outgoing Designated Federal Officer for CFSAC, had invited a representative from the National Center for Health Statistics to attend the meeting, though no-one had been available for that date.

Instead, Dr Jones presented Committee members with a four page document ICD-related questions from CFSAC for May 2011 meeting as background information.

The document, which can be downloaded in PDF format here, set out responses to the following questions:

What are the key steps in development of the ICD-10-CM?
How does the ICD-CM (whatever version, -9, -10, etc.) align with past and current versions of the -CM and with the WHO’s current and past versions?
How is the ICD-CM used in policy-related decision making?
What difference does coding designation make? How do we get providers to use a particular code–is it an issue of education, of outreach, or what? If codes related to CFS are in several different places, doesn’t that affect the count? And finally, if the codes change, do we lose the numbers from the prior coding systems?
How does ICD coding relate to DSM coding (or does it)?
Partial List of Organizations Consulted and/or Reviewing ICD-10-CM During Development and Ongoing Maintenance of ICD-10-CM

 

CFSAC Recommendations – May 10-11, 2011

Following a 45 minute discussion of the forthcoming partial code freeze, the implications for CFS and ME patients of current proposals for ICD-10-CM and in the context of draft proposals by the DSM-5 Work Group for “Somatic Symptoms Disorders”, a new Recommendation was proposed by Dr Lenny Jason, seconded by Dr Nancy Klimas, and voted unanimously in favour of by the Committee.

The specific recommendation articulated by the Committee in respect of the agenda item above was:

1. CFSAC rejects current proposals to code CFS in Chapter 18 of ICD-10-CM under R53.82: Chronic fatigue, unspecified > Chronic fatigue syndrome NOS. CFSAC continues to recommend that CFS should be classified in ICD-10-CM in Chapter 6 under “diseases of the nervous system” at G93.3, in line with ICD-10 and ICD-10-CA (the Canadian Clinical Modification), and in accordance with the Committee’s recommendations of August 2005. CFSAC considers CFS to be a multi-system disease and rejects any proposals to classify CFS as a psychiatric condition in US disease classification systems. (Note: no disease classification system under HHS’ control proposes to move or to include CFS in or among psychiatric conditions.)

Information on the ICD-9-CM Coordination and Maintenance Committee September 2011 meeting referred to by Dr Jones, in the Minutes, can be found on this page.

Information of the International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) draft due for implementation in October 2013 can be found on this page.

Video of this section of the meeting can be viewed here at Videocast Day One at 4hrs 27 mins in from start of broadcast.

I should like to thank Dr Lenny Jason, whose term as a CFSAC Committee member ends following the November meeting, for informing the Committee around current proposals for the forthcoming ICD-10-CM, on the classification of PVFS, ME and CFS in ICD-10 and on the development of ICD-11 and for also raising with the Committee concerns around DSM-5, an issue that had not previously been discussed in any depth at a CFSAC meeting.

Extract (Pages 26-29) Minutes May 10-11 CFSAC

DISCUSSION OF INTERNATIONAL CLASSIFICATION OF DISEASES – CLINICAL MODIFICATION (ICD-CM) CONCERNS

Dr. Christopher Snell

• Brought the meeting to order. Noted they would have a discussion of the ICD-related questions and the proposed reclassification of chronic fatigue syndrome.

• Advised there was a page in the members’ notebooks tabbed after the State of the Knowledge summary which noted key steps in the development of the ICD 10 CM, so a clinical modification of the World Health Organization’s (WHO) ICD 10. It would replace ICD 9.

• Stated his understanding of the issues:

o Disconnect between the way the U.S. uses the classification and the rest of the world.
o The way CFS is classified under the ICD system has implications for both reporting of incidents, morbidity and mortality.
o Used by outside agencies to categorize the illness for purposes of inclusion or exclusion. Opened the floor for discussion.

Dr. Wanda Jones

• Clarified that the committee requested that the National Center for Health Statistics have someone to talk to them about the international classification of diseases, about the process, about how the U.S. adapts the WHO index, ( the ICD) for use and about opportunities for dialogue.

• Noted that a meeting was set a year ago for May 10 and 11 in Baltimore that engaged resources of CMS, parts of the federal government focused on health IT and the entire ICD team from the National Center for Health Statistics (NCHS).

• Noted that as a result no one was available for the CFSAC meeting.

Page 27 of 41

• In lieu of their attendance, she developed some questions that the NCHS, ICD team responded to.

• Tried to clarify the questions so they would have a good understanding of the key processes and the key inflection points differentiating the WHO process from the U.S. ICD-CM, the clinical modification process.

• Raised additional questions regarding how alignment from prior versions is maintained and how ICD coding is used in decision-making.

• Noted also the relationship between the coding and the diagnostic and statistical manual (DSM). Stated that the information was provided by the NCHS and is meant to generate discussion.

• Stated that the ICD-CM process is a public process with regularly scheduled public meetings. Noted that there is an opportunity to comment as part of that process and to engage.

• Confirmed that the NCHS stated that there has been no public presence from the CFS community at the meetings.

• Noted that this was the process for people interested in CFS coding to become involved. Confirmed that there was a lock procedure that is soon to be executed for the ICD 10 CM.

• Noted it had been in development for a decade and the United States’ move to electronic records means it has to temporarily lock the codes. The electronic health records software would not be ready if they keep changing them.

• Noted that information about coding changes would continue to be collected, taken under advisement and the NCHS would continue the process of evaluating.

• Stated that once it is in public use then that lock will release and there would be an opportunity on a periodic basis for updating.

Dr. Leonard Jason

• Stated that the committees are developing ICD 10 CM and it intends to retain CFS in R codes (R53.82) and this means that the symptoms, signs, abnormal results of clinical or other investigative procedures are ill-defined conditions.

• Stated that R-codes means it’s an ill-defined condition regarding which no diagnosis is classifiable elsewhere. Explained that if it cannot be diagnosed elsewhere in ICD 10 it goes into a R-code.

• The intention in ICD 11 is to put CFS with two other conditions (post viral fatigue syndrome and benign myalgic encephalomyalitus) under a G-code, being G93.3 or diseases of the nervous system. Noted that coding CFS under the R-code in the proposed ICD 10 CM would place it out of line with the International ICD 10 used in over 100 countries.

• Discussed the problems and implications of the U.S. coding of CFS as compared with how other countries are coding it.

Page 28 of 41

It would exclude it from the R53 malaise and fatigue codes, which would imply that CFS does not have a viral etiology.

• Brought forward a motion to be considered:

CFSAC rejects current proposals to code CFS in Chapter 18 of ICD 10 CM under R53.82 chronic fatigue syndrome unspecified, chronic fatigue syndrome NOS (not otherwise specified). CFSAC continues to recommend that CFS should be classified in the ICD 10 CM in Chapter 6 under diseases of the nervous system at G93.3 in line with international ICD 10 in ICD 10 CA which is the Canadian clinical modification and in accordance with the committee’s recommendation which we made in August of 2005. CFSAC considers CFS to be a multi-system disease and rejects any proposals to classify CFS as a psychiatric condition in U.S. disease classification systems.

• Noted that ME and CFS patients could be potentially vulnerable to the current DSM 5 proposals because those proposals are highly subjective and difficult to quantify.

• Noted that retaining the CFS in the R-codes in the IDC 10 CM differentiates the U.S. from other countries but it renders CFS and ME patients more vulnerable to some of the DSM 5 proposals, notably chronic complex symptom disorder [sic].  [Ed: Complex Somatic Symptom Disorder]

Dr. Klimas asked for clarification, and Dr. Jason said that in 2013 they would move from DSM 4 to DSM 5. As it stands they would be collapsing somatization disorder, undifferentiated somatoform disorder, hypochondriasis and some presentations of panic disorder [sic] [Ed: pain disorder]  into complex somatic symptom disorder. Dr. Klimas clarified that his concern was that the CFS ICD 9 codes would put the non post viral patients into this somatoform cluster. Dr. Jason indicated that this was so.

Dr. Klimas seconded the motion. Mr. Krafchick agreed and stated that the ramifications of the classification would be disastrous for patients, because it would limit disability payments to two years. Dr. Jones clarified that for now the clock was ticking, however once the codes were released, they could be revised, it’s just the implementation of the electronic system which is causing it to be locked at a particular point in time. While CFSAC has shared concerns with NCHS, there is an official process for engaging with them on their discussions regarding the codes. The US was interested in morbidity, in case claims. It is important that providers know how to best categorize things, and provide guidance on which codes to consider based on the science for the disease being evaluated.

Mr. Krafchick stated that the issue was that the criteria for the codes was etiology/trigger based. Dr. Jones clarified that it would still remain in the clinician’s judgment, however if they could not identify where the trajectory developed toward CFS, then it would wind up in the R codes. Dr. Jones clarified also that the NCHS does not view the R category as a somatoform disorder. Mr. Krafchick and Dr. Snell indicated they understood this but it would still represent vulnerability for patients when classifying.

Dr. Jason restated his recommendation.

Page 29 of 41

Dr. Marshall stated his concern that there was an attendant risk with this, but that they were between a rock and a hard place. He agreed CFS/ME being classified as a somatoform disorder was inappropriate, but at the same time that the recommendation says it’s a complex multi-system disease, it categorizes it within a single nervous system disease silo. This might affect future research funding opportunities with people saying they don’t fund neurological research. He expressed the view that they should advocate for classification in a multi-system disease category rather than putting it in a nervous system disease category for future, though this category did not exist now. It would be a good thing for patients short term, but it could be a long term risk.

Dr. Snell said that given the amount of current funding, this wasn’t a risk. Dr. Marshall said that using reverse translational research as had been advocated during the meeting might increase the role of this categorization, and could be restrictive in funding.

Dr. Jones asked whether the recommendation being put forward was the same as the May 2010 recommendation, and Dr. Jason said that his was dramatically different. Mr. Krafchick underscored how the insurance companies use these ICD codes. If it was classified in something that could be psychiatric it will be psychiatric, so they can deny coverage.

Dr. Levine asked about co-morbid disorders and how these are weighted. Dr. Jones responded that she did not think that there was a weighting. It would get listed like a death certificate, a cause of death and then a secondary, sometimes a third. She stated it was the judgment of the clinician how it was listed.

Dr. Klimas expressed the view that coding was also problematic because clinicians code to get paid. There already exists a bias against coding CFS as CFS because the codes could not be used for billing. She stated that they would make a conscious decision not to code CFS as CFS. She indicated that neurology was a fine place for it to be categorized, and at least this would assist people who may be looking for patient data, as it wouldn’t be ignored.

Dr. Snell asked for a vote of all those in favor regarding Dr. Jason’s motion. The motion passed unanimously.

Dr. Jones noted that she would share this recommendation with the NCHS but repeated that unless someone moved forward to intervene in the official processes in the public record it may not move forward or have an effect.

Dr. Jones noted that the next ICD meeting is September 14 – 15, 2011 with public comments due July 15. Noted this will be put on the CFSAC website. She noted she would check the rules to see if a member of the CFSAC or the Chair would be able to give public testimony at another advisory committee meeting. Mr. Krafchick said that if it were possible to send someone as a member of the committee, it would make a great deal of sense and be very important. Dr. Jones said they would figure out how this could happen. Ms. Holderman asked whether this notice, and any future notices where they might want to intervene, could be placed on the CDC website. She stated this cross listing would be useful.

Page 30 of 41

Dr. Jones said that from her experience with the fast evolving HIV coding, there was a dialogue so that coding kept up. She expected there would be some connection, however not as comprehensive or active as that disease.

Dr. Mary Schweitzer, a member of the public, stated that the NCHS did come to CFSAC in 2005 and Dr. Reeves at the time was specific and said that CFS needed to be in R53 due to his own method of diagnosis. She suggested that this showed an obvious connection between the CFS side of CDC and NCHS at the time.

[Extract from Minutes, CFSAC Day One: May 10, 2011 ends]

Filed under American Psychiatric Association (APA), CFSAC meetings, Clinical Modification, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, ICD-10, ICD-10-CM, ICD-11 Alpha Draft, Somatic Symptom Disorder, Somatoform Disorders

Important notice from DSM-5 Development website (further extension to comment period)

July 15, 2011 by

Important notice from DSM-5 Development website (further extension to comment period)

Post #98 Shortlink: http://wp.me/pKrrB-1eW

DSM-5 Development

http://www.dsm5.org/Pages/Default.aspx

Friday, July 15th: We are experiencing some site difficulties and our system is unable to accept comments today. As this is the final day of our open comment period, we encourage you to submit your comments to dsm5@psych.org. We will make sure your comments, if posted by midnight, July 18th, are directed to the appropriate DSM work group(s) for their review. We apologize for the inconvenience and appreciate your contributions to this important diagnostic revision.

Filed under American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-V, Functional Somatic Syndrome (FSS), Joel Dimsdale, MUS, Somatic Symptom Disorder, Somatoform Disorders

Three days left before the second DSM-5 stakeholder review period closes

July 13, 2011 by

Three days left before the second DSM-5 stakeholder review period closes

Post #97 Shortlink: http://wp.me/pKrrB-1eA

On June 16, the American Psychiatric Association (APA) announced an extension to its second public stakeholder review of draft proposals for categories and criteria for the next edition of the Diagnostic and Statistical Manual of Mental Disorders, which will be known as “DSM-5”.

The closing date for submissions is now Friday, July 15.

There are just three more days left in which to submit letters of concern in response to potentially damaging proposals being put forward by the Work Group for “Somatic Symptom Disorders” – the DSM-5 committee charged with the revision of existing DSM-IV “Somatoform Disorders” categories. 

Today, patient advocate, Caroline Davis, has sent me a copy of her letter for inclusion on this site. Ms Davis tells me she has made her submission available for other patients to use.

If you haven’t already submitted a comment, please do, however brief. You’ll find  information on making submissions in this post: http://tinyurl.com/DSM-5-register-to-comment.

Proposed criteria and two key documents are posted here: http://wp.me/pKrrB-13z.

For examples of other letters of concern, you’ll find copies of this year’s submissions, including the Coalition4ME/CFS’s resource materials and template letter, collated here: http://wp.me/PKrrB-19a. These include letters of concern from international patient organizations, professional stakeholders, patients, patient advocates and professional bodies.

If you have already submitted but have other points to make, please submit a second response. 

If you know an informed professional please alert them today to the implications for patients with ME, CFS, IBS, FM, CI, CS, Gulf War illness and other illnesses that are bundled under the “Functional Somatic Syndromes” and “Medically Unexplained” umbrellas.

If the Work Group’s current proposals are approved, these illnesses will be sitting ducks for an additional mental health diagnosis of a “Somatic Symptom Disorder”.

If you haven’t yet registered your concerns, please get a letter in before the feedback period closes on July 15!

Submission by patient advocate, Caroline Davis

J 00 Complex Somatic Symptom Disorder

I would like to express my deep concern about the proposed new category of Complex Somatic Symptom Disorder (CSSD) in DSM-5 scheduled for release in 2013.

CSSD proposes to add a mental health diagnosis to any condition where the sufferer has been ill for more than six months, and has developed ‘excessive’ concern about his or her health.

Since most good employers have a sick leave scheme which pays full or most-of-full pay for six months, this timeframe coincides most unhealthily with:

a) The individual’s realisation that their illness might not resolve, and/or might possibly be a disability and

b) A concerted effort to research their condition and seek more tests and treatments in order to get well and

c) The looming possibility of job loss, financial penury and the imminent need to make insurance or disability claims.

A patient in such a situation is likely to fall slap-bang within the CSSD criteria of:

(2) Disproportionate and persistent concerns about the medical seriousness of one’s symptoms and

(3) Excessive time and energy devoted to these symptoms or health concerns

The effect is to automatically deliver a diagnosis for an Axis I psychiatric disorder, simply for finding out what is causing one’s symptoms after such a long time of being ill, and wanting to do the best one can in order to get well and save one’s job and prospects for the future.

There is no empirical data to support the existence of ‘CSSD’. I believe that it is neither clinically safe nor morally right to force through un-researched, untried, untested (and possibly entirely inaccurate) diagnostic criteria for an entirely un-researched, untested (and possibly false) psychiatric condition. As your paper itself says, CSSD is merely ‘a construct’. There is no empirical evidence to support this ‘construct’ but plenty of circumstantial and factual evidence for why this ‘construct’ has been proposed and is being pushed forward with such unseemly speed.

Most patients are sick, but not stupid. We were managers, scientists, teachers, medical people, civil servants and business people in our former lives, and we still have functioning brains. We can see that names on the DSM committee considering CSSD include those in the pay of insurance companies and Governments (including the UK medical establishment). We also know that the implications of DSM-5 will extend to the next version of WHO.

There are those on your committee who wish only to do the bidding of their financial paymasters, and they are doing this by creating diagnoses such as ‘CSSD’ which will allow insurance companies and Government agencies to deny the claims of the genuinely sick and disabled. I urge the rest of the committee members not to allow them to do this, and to remain faithful to the objectives of WHO classifications as an excellent source of unbiased medical knowledge for the guidance of medical practitioners across the world.

Please do not let the DSM – and by implication the WHO classifications – become the vehicle of Governments and insurance companies to get their financial needs met.

I urge the committee to see past the claim that: a ‘diagnosis of CSSD could be applied to any patient with any diagnosis’. In clinical practice, as well as in your own discussions, it is already clear that this ‘diagnosis’ would be applied far more readily to patients already vilified for having conditions for which there is no objective medical test, eg: IBS, ME/CFS, FM, Gulf War Syndrome, interstitial cystitis, long-term pain and others. I urge the committee to examine the level of medical research funding dedicated to these conditions: they will find that funding for biomedical research has been restricted to bare, minimal levels for the past thirty years, which goes a long way toward explaining why there are no differential medical tests for these conditions yet. The solution is more and better biomedical research, not to create a new ‘bucket’ classification to financially manage-away these conditions.

I urge the committee to consider the consequences of moving too fast to approve a classification which is likely to be immediately pejorative to patients. The inclusion of ‘CSSD’ as a possibility for diagnosis will tap into the already hysterical media and ‘biopsychosocial’ research claims and pronouncements about these misunderstood and underestimated conditions.

The consequences – unintended by those whose moral conscience on DSM-5 is clear, and jauntily dismissed by those for whom recognition of these conditions would be financially and politically injurious – are likely to be catastrophic. They include: sceptical medical practitioners who will increasingly believe that it is OK not to test and treat, nor to provide appropriate care, nor to support disability benefit claims; and insurance companies who continue to charge huge premiums and would (with CSSD in place) be free to dismiss valid claims for some of the sickest people they serve.

Not only is this not an appropriate route to management or cure for such patients, but the consequences will quickly spiral into poverty, physical distress and in some cases preventable death.

Even if a patient should subsequently recover, the stigma of a mental health diagnosis is likely to legislate against the possibility of future employment and full reconstruction of a career at pre-illness levels. Thus it would have a direct economic effect on both the individual and the economy.

How much is CSSD really about the management of sickness and disability in patients by doctors and health service professionals, and how much is it the product of financial machinations by insurance companies and Governments seeking to minimise liability for medical care and disability?

While there is such a dearth of properly-conducted research (by non-partisan medical scientists) into the medical validity, applicability and usefulness of CSSD as a diagnosis; and while the likelihood of rushing into including it is likely to have such potentially dire consequences for patients (and, through effects on reputation and liability, also for medical practitioners) I request and appeal for CSSD to be omitted from the DSM-5.

Yours sincerely

Caroline Davis

Patient, advocate

  

Second DSM-5 public review of draft criteria

The closing date for comments in the second DSM-5 public review has been extended to July 15.

Register to submit feedback via the DSM-5 Development website here: http://tinyurl.com/Somatic-Symptom-Disorders

Once registered, log in with username and password and go to page: http://tinyurl.com/DSM-5-CSSD

Copies of this year’s submissions are being collated here: http://wp.me/PKrrB-19a

Filed under American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-V, Francis Creed, Functional Somatic Syndrome (FSS), ICD-11, Somatic Symptom Disorder, Somatoform Disorders

Update on ICD-11 development: July 3, 2011

July 3, 2011 by

Update on ICD-11 development: July 3, 2011

Post #96 Shortlink: http://wp.me/pKrrB-1eb

The information in this mailing relates only to ICD-11, the forthcoming revision of ICD-10 that is scheduled for pilot implementation in 2015. It does not apply to the forthcoming US specific Clinical Modification of ICD-10, known as “ICD-10-CM”, scheduled for implementation in October 2013, or to Clinical Modifications of ICD-10 already in use.

Caveat (updated 18 September 2011): The screenshots below were a “snapshot” of the ICD-11 Alpha Browser as it had stood on May 17 and 19, 2011. The ICD-11 Alpha Browser is a work in progress and is updated by ICD Revision personnel on a daily basis. Information visible in the Alpha Browser is incomplete, will have changed since May 17, may be in a state of flux and may contain errors and omissions; the codes and temporary “Sorting labels” assigned to ICD parent classes and categories are subject to change as work on the draft progresses and as chapters are reorganized. Note that the screenshots below no longer reflect what can be seen in the draft, as it currently stands in September 2011.

Not all ICD-11 category terms and the data associated with them (which is in the process of being populated according to 13 common ICD-11 Content Model fields, that include Definitions, Inclusions, Exclusions, Causal Mechanisms and other parameters that will be used to describe ICD-11 entities) display in this version of the Alpha Browser platform. A separate, more layered electronic drafting platform is being used by the various ICD Revision Topic Advisory Group (TAG) managers and their workgroup members, accessible only to ICD Revision TAG personnel via a password protected log in. The multi author electronic platform which the Revision TAGs are working on displays Content Model fields that are not currently viewable by the public, though for some ICD categories, Definitions are now displaying in the public version, as the development of some chapters of the ICD-11 Alpha Browser is more advanced than others.

In the next month or two, ICD-11 Revision is planning to release a new drafting platform which will be accessible by the public and for which professionals and the public will be able to register online to submit comment. This new platform was originally scheduled for mid May, then July, but ICD Revision is slipping its targets. When the new platform is released, there will be an official channel of communication but the commenting process will not be like that of the DSM stakeholder review. For an idea of what is being planned for stakeholder involvement during the alpha and beta development stages, see the presentation slides in these two Dx Revision Watch posts from April 19, 2011:

ICD Revision Process Alpha Evaluation Meeting 11 – 14 April 2011: The Way Forward?

Shortlink Post #70: http://wp.me/pKrrB-ZN

ICD Revision Process Alpha Evaluation Meeting documents and PowerPoint slide presentations

Shortlink Post #71: http://wp.me/pKrrB-10i

In the meantime, the version of the Alpha Draft currently visible to the public comes with WHO caveats and should not be relied upon and it does not reflect the screenshots below, as they had stood in May, this year. As soon as the new public platform is released, I will update, at the moment there is insufficient information to reliably determine proposals and I am seeing misreporting and outdated information being discussed on some forums.

For example, in June to November 2010, the iCAT Alpha Draft recorded a change in hierarchy for PVFS because its parent class “G93 Other disorders of brain” is removed, with ICD Title “Gj92 Chronic fatigue syndrome” listed as a child category of parent class, “GN Other disorders of the nervous system” (see this post for screenshots as they stood at that date).

But by May 2011, the “Sorting labels” had been revised and the public version of the alpha draft displayed “06L Other disorders of the nervous system” > “06L00 Chronic fatigue syndrome”. However, the 06L00 code has subsequently been reassigned to parent class “Disorders of autonomic nervous system”, and parent class, “[G93] Other disorders of brain” (an ICD-10 legacy parent class which had previously been proposed to be removed or retired) has since reappeared as a parent class at “06L02”.

“Chronic fatigue syndrome” is currently listed not at, or under “06L00”, or under parent class “06L02” [formerly parent class G93, under which had sat PVFS and (B)ME and a number of other child classes to G93], but is currently assigned the Sorting label “23A113.00” under:

23 Special tabulation lists for mortality and morbidity
  > 23A Tabulation list for mortality
     >> 23A113 Selected cause is Remainder of the nervous system in Condensed and selected Infant and  child mortality lists
         >>> 23A113.00 Chronic fatigue syndrome

(for which no rationale or “Discussion Note” is evident in the public version), together with a long list of other Chapter 6 categories listed under Special tabulation lists for mortality and morbidity.

I would advise against attempting to determine ICD-11 proposals based on the status of the information as it currently displays, the ambiguities, the lack of visible “Discussion Notes” which explain changes (which had been visible in the iCAT platform, last year) and given that input and organization of data on the multi editor platform is subject to daily revision by numerous ICD Revision personnel, is therefore in a state of flux and may contain technical errors and omissions due to software glitches and human error in data entry and operation of a complex electronic platform.

I wrote to WHO’s Sarah Cottler in September 2011 requesting clarifications. No response was received.

Click here for ICD Caveats

 

Screenshot from ICD11 Alpha  retrieved May 17 – 11.02 UTC    Chapter 6 Diseases of the nervous system: Foundation Tab selected

ICD11 Alpha Chapter 6

    »  http://apps.who.int/classifications/icd11/browse/f/en#/@_@who_3_int_1_icd_2_G93_3_3

Screenshot from ICD11 Alpha  retrieved May 19 – 11.02 UTC    Chapter 6: Linearizations Tab > Morbidity selected

    »  http://apps.who.int/classifications/icd11/browse/l-m/en#/@_@who_3_int_1_icd_2_G93_3_3

 

Slipping Timeline

In May, I reported that the revision of ICD-10 and development of ICD-11 is running about a year behind targets for the population of content and software development and that the ICD-11 Timeline for Alpha and Beta drafting has been adjusted [1]. In order to meet its revised schedule, the technical work on ICD-11 will need to be completed by 2013, the year the APA’s DSM-5 is slated for publication. 

Drafting platforms

In November 2010, the iCAT platform through which ICD-11 was being drafted was taken out of the public domain. In May, this year, an ICD-11 Alpha browser was released for public viewing [2], with a number of caveats [3].

This most recently published Alpha platform does not include many of the “Content Model” parameters, for example, no draft “Definitions” are included and neither are the  “Discussion Notes” and “Change Histories” that had been viewable in the iCAT, as it stood last June to November. You can see screenshots of the June to November 2010 version of the iCAT in this post [4].

For screenshots from the most recent Alpha Browser for:

Chapter 6: Diseases of the nervous system > 06L Other disorders of the nervous system > 06L00 Chronic fatigue syndrome

see this post [5] or pull up the Alpha Browser pages, here [6].

As you’ll see, ICD-10 Chapter VI (6) is undergoing reorganization and the parent class “G93 Other disorders of brain” under which “Postviral fatigue syndrome”, “Benign myalgic encephalomyelitis” and many other ICD-10 categories had sat is proposed to be removed. A change of hierarchy between “Postviral fatigue syndrome” and “Chronic fatigue sydrome” is recorded in a “Change History” note.

Reorganization of Chapter 6 Diseases of the nervous system

Chapter 6 categories for ICD-11 are currently assigned the codes 06A thru 06L02. It is not known what codes will eventually be assigned to the categories within ICD-11 Chapter 6. As you’ll see from the screenshots, “06L00 Chronic fatigue syndrome” is proposed to be classified under “06L Other disorders of the nervous system”, with “Benign myalgic encephalomyelitis” specified as an Inclusion term to “06L00 Chronic fatigue syndrome”.

Relationships between Inclusion terms are not specified within ICD-10, but they will be specified within ICD-11.

Go here for ICD-11 Chapter 5 “Neurotic, stress-related and somatoform disorders” > Somatoform Disorders and Neurasthenia:

http://apps.who.int/classifications/icd11/browse/f/en#/@_@who_3_int_1_icd_2_F45

http://apps.who.int/classifications/icd11/browse/f/en#/@_@who_3_int_1_icd_2_F48_3_0

Go here for ICD-11 Chapter 18 “Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified” > Malaise and fatigue:

http://apps.who.int/classifications/icd11/browse/l-m/en#/@_@who_3_int_1_icd_2_R53

 

The Revision Steering Group (RSG) and the various ICD Revision Topic Advisory Groups (TAGs) and their external reviewers for content and proposals are using a more layered version of the platform on which they are undertaking the ongoing drafting process; their platform is currently accessible only to WHO, ICD Revision and IT technicians.

The public version of the ICD-11 Alpha Browser, which is being updated daily, is currently open for public viewing only – not for commenting on. But in July, ICD Revision is planning to open up the Alpha Browser for one year for public commenting and consultations.

Extracts from: http://www.who.int/classifications/icd/revision/en/index.html

ICD-11 Timeline

Compiled from the most recent Timelines [1] [7]:

• May 2011: Alpha Browser opened up for public viewing [Reached]

• July 2011: Alpha Browser opened up for public commenting

+1 year for Commentaries and consultations

• May 2012: Beta version opened up to public and Field Trials Version

+2 years for Field trials

• 2014: Final version for public viewing

• May 2015: Presentation of the final version for World Health Assembly (WHA) Approval

Stakeholder participation

The WHO will be engaging with stakeholders who express an interest in participating in the ICD revision process.

Individuals may register to:

Make comments

Make proposals to change ICD categories

Participate in field trials

Assist in translating

The drafting browsers will be open all year round, subject to continuous daily updates and open to all interested stakeholders – Health Care Providers, Information Managers etc. Proposals and feedback will be subject to structured peer review by the Topic Advisory Groups.

For more information on how stakeholder participation is being projected see presentation slides in these reports on my site [8] [9].

Registering for participation

It’s currently unclear which classes of stakeholder might be called upon to participate, and to what extent, during the Alpha drafting stage.

The Stakeholder Registration Form [10] currently appears geared for participation by medical and allied health professionals and administrators. Irrespective of whether the “Yes” or “No” field for the question “Are you a health care professional?” is selected, one is presented with the same options:

Register to become involved

http://www.who.int/classifications/icd/revision/en/index.html

WHO wants to know if you are interested in being involved in the ICD Revision. We will contact you as certain features are opened to the public.

What is your clinical profession?

Medicine

Psychology

Nursing

Counselling

Social Work

Health Information Manager

Coder

Which of the following describes your highest educational attainment? Pre-University; University Degree; Non-doctoral post graduate degree (e.g. Master’s;) Doctoral degree (PhD, post bachelor’s MD, or similar)

Are you interested in participating in:

Making proposals

Peer-reviewing

Field trials

I will check the form again, once the Alpha draft has been opened up for public comment, currently scheduled for July. It is anticipated that an Alpha browser using different software from that currently in use may be released in July. I will update when the browser is opened up for public comment.

The ICD-11 “Content Model”

The WHO’s, Dr Bedhiran Üstün, describes ICD-10 as a “laundry list”. One of the most significant differences between ICD-10 and the forthcoming ICD-11 will be the “Content Model”.

Content Model

http://www.who.int/classifications/icd/revision/contentmodel/en/index.html

The content model is a structured framework that captures the knowledge that underpins the definition of an ICD entity.

• Represents ICD entities in a standard way

• Allows computerization

• Each ICD entity can be seen from different dimensions or “parameters”. E.g. there are currently 13 defined main parameters in the content model to describe a category in ICD (see below).

• A parameter is expressed using standard terminologies known as “value sets”

Content Model Parameters

ICD Entity Title

Classification Properties

Textual Definitions

Terms

Body System/Structure Description

Temporal Properties

Severity of Subtypes Properties

Manifestation Properties

Causal Properties

Functioning Properties

Specific Condition Properties

Treatment Properties

Diagnostic Criteria

For more information on the application of the “Content Model” see document [11].

Definitions

There are no definitions inlcuded in any volume of ICD-10 for  “Postviral fatigue syndrome”, “Benign myalgic encephalomyelitis” or “Chronic fatigue syndrome”. WHO has never set out what it understands by these terms nor has it specified what ICD-10 understands the relationships between these three terms to be (see page: https://dxrevisionwatch.wordpress.com/icd-11-me-cfs/) but there will be definitions in ICD-11 and the relationships between Inclusion terms will be specified.

Definitions

http://www.who.int/classifications/icd/revision/def/en/index.html

• All ICD entities will have definitions: key descriptions of the meaning of the category in human readable terms – to guide users

• Limited definition in Print Version – 100 words

• Detailed definitions ONLINE

• Definitions will be compatible with:

– the Content Model

– Diagnostic Criteria

– across the whole classification and the versions

Versions of ICD-11 are planned for multiple settings:

Primary Care

Clinical Services

Research

Specialty Adaptations of ICD-11 are being planned for:

Children and Youth

Oncology

Mental Health

Neurology

Musculoskeletal

Dermatology

Dentistry

————————————–

Sources, references and further reading:

ICD-11 Revision on main WHO website

http://www.who.int/classifications/icd/revision/en/

1] ICD-11 Revised Timeline

http://www.who.int/classifications/icd/revision/timeline/en/index.html

2] ICD-11 Alpha Browser Platform

http://apps.who.int/classifications/icd11/browse/f/en

3] ICD-11 Alpha Browser Caveats

http://www.who.int/classifications/icd/revision/caveat/en/index.html

4] Article: iCAT collaborative authoring platform, June to November 2010, screenshots and notes

https://dxrevisionwatch.wordpress.com/2010/06/07/pvfs-me-cfs-and-the-icd-11-alpha-draft-and-icat-collaborative-authoring-platform/

5] Article: ICD-11 Alpha Browser Platform, screenshots and notes for Chapter 6: Diseases of the nervous system > 06L Other disorders of the nervous system > 06L00 Chronic fatigue syndrome

https://dxrevisionwatch.wordpress.com/2011/05/19/icd-11-alpha-drafting-platform-launched-17-may-public-version/

6] ICD-11 Alpha Browser Platform: ICD-11 entity “06L00 Chronic fatigue syndrome”

Foundation:

http://apps.who.int/classifications/icd11/browse/f/en#/@_@who_3_int_1_icd_2_G93_3_3

Linearizations Morbidity:

http://apps.who.int/classifications/icd11/browse/l-m/en#/@_@who_3_int_1_icd_2_G93_3_3

7] ICD-11 Timeline: PowerPoint presentation (in PDF format)

http://unstats.un.org/unsd/class/intercop/expertgroup/2011/AC234-P32.PDF

8] Article: ICD Revision Process Alpha Evaluation Meeting documents and PowerPoint slide presentations

https://dxrevisionwatch.wordpress.com/2011/04/19/icd-revision-process-alpha-evaluation-meeting-presentations/

9] Article: ICD-11 Revision Steering Group struggling to meet targets for release of Beta Draft platform in May

https://dxrevisionwatch.wordpress.com/2011/04/11/icd-11-struggling-to-meet-targets-for-release-of-beta-draft-in-may/

10] Register for participation in ICD-11 Alpha drafting process

http://www.who.int/classifications/icd/revision/en/

Stakeholder Registration form

https://spreadsheets.google.com/spreadsheet/viewform?formkey=dDVabnF1RFpTQkVnVEN2TXhVRm55MGc6MQ

[11] ICD-11 Content Model Reference Guide version January 2011

http://sites.google.com/site/icd11revision/home/documents

https://dxrevisionwatch.com/wp-content/uploads/2011/02/content20model20reference20guide20january2020111.doc

Filed under iCAT, ICD-11, ICD-11 Alpha Draft, ICD-11 Beta Draft, ICD-11 consultation, ICD-11 revision docs, Somatoform Disorders, WHO (World Health Organization)

Minutes: Chronic Fatigue Syndrome Advisory Committee (CFSAC) Spring meeting: May 10 – 11

July 2, 2011 by

Minutes: Chronic Fatigue Syndrome Advisory Committee (CFSAC) Spring meeting: May 10 – 11

Post #95 Shortlink: http://wp.me/pKrrB-1dP

“The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS). These include:

  • factors affecting access and care for persons with CFS;
  • the science and definition of CFS; and
  • broader public health, clinical, research and educational issues related to CFS.

“Administrative and management support for CFSAC activities is provided by the Office of the Assistant Secretary for Health (OASH). However, staffing will continue to be provided primarily from the Office on Women’s Health, which is part of OASH.”

 

The twentieth meeting of CFSAC Committee was held in Washington, DC, over two days in May.

Minutes for the proceedings on Day One (May 10) are now published on the CFSAC website. I will update this post when Minutes for Day Two (May 11) and the Recommendations resulting out of this meeting are also published.

Chronic Fatigue Syndrome Advisory Committee (CFSAC)

Meeting May 10-11, 2011

Documents

CFSAC website  

Agenda CFSAC Meeting May 10 – 11  

Presentations and Public Testimonies

Videocasts Day One and Two

Meeting background documents

Recommendations [not yet published]

Minutes Day One (May 10)

Minutes Day Two (May 10) [not yet published]

Open in PDF format: CFSAC Minutes 10 May 2011

43 Pages in PDF format

The Twentieth Meeting of THE CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE US DEPARTMENT OF HEALTH AND HUMAN SERVICES

Hubert H. Humphrey Building, Room 712E, 200 Independence Avenue, SW

Washington, DC 20101

Tuesday, May 10, 2011 – 9:00 am to 5:00 pm

Discussion of concerns around the long-standing proposals for the coding of Chronic Fatigue Syndrome in the forthcoming US specific “Clinical Modification” of ICD-10, known as “ICD-10-CM”, had been tabled on the agenda at 1.15pm on Day One of  the meeting. 

ICD-10-CM has been under development for many years. A public comment period ran from December 1997 through February 1998.

In 2001, the CDC were recommending that Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic Fatigue Syndrome should all be classified within Chapter 6 Diseases of the nervous system at G93.3, in line with the international ICD-10, from which ICD-10-CM was being adapted for US use.

By 2007, the proposal was (and still stands) that Postviral fatigue syndrome and Benign myalgic encephalomyelitis would be classified in Chapter 6 at G93.3, but that Chronic Fatigue Syndrome would be retained in the R codes (which will be Chapter 18 in ICD-10-CM) and coded under R53 Malaise and fatigue > R53.82 Chronic fatigue, unspecified” > chronic fatigue syndrome NOS, Excludes1: postviral fatigue syndrome (G93.3).

The history of the coding of PVFS, (B)ME and Chronic fatigue syndrome in ICD to 2001 is set out in this CDC document: http://www.co-cure.org/ICD_code.pdf

At the May 10 CFSAC meeting, around 50 minutes was given over to discussion of this agenda item which resulted in a motion proposing a new Recommendation to HHS that was unanimously voted in favour of by the committee.

 

As I have a particular interest in this issue, I have interspersed this section of the Minutes with notes addressing a number of errors and misunderstandings. My comments are inserted in blue, bold.

As these notes are inserted into official Minutes I give no permission to re-publish as both the formatting and the integrity of an official document will be lost – so permission to link to this post only.

Discussion of International Classification of Diseases-Clinical Modification (ICD-CM)

Page 27:

LUNCH

The Chronic Fatigue Syndrome Advisory Committee recessed for lunch for one hour.

Discussion of International Classification of Diseases-Clinical Modification (ICD-CM) concerns

DISCUSSION OF INTERNATIONAL CLASSIFICATION OF DISEASES – CLINICAL MODIFICATION (ICD-CM) CONCERNS

Dr. Christopher Snell

Brought the meeting to order. Noted they would have a discussion of the ICD-related questions and the proposed reclassification of chronic fatigue syndrome.

Chronic fatigue syndrome is not being “reclassified” as such for ICD-10-CM, but being proposed to be retained in the R codes, as a legacy of ICD-9-CM, rather than follow international ICD-10.

Advised there was a page in the members’ notebooks tabbed after the State of the Knowledge summary which noted key steps in the development of the ICD 10 CM, so a clinical modification of the World Health Organization’s (WHO) ICD 10. It would replace ICD 9.

Stated his understanding of the issues:

o Disconnect between the way the U.S. uses the classification and the rest of the world.

o The way CFS is classified under the ICD system has implications for both reporting of incidents, morbidity and mortality.

o Used by outside agencies to categorize the illness for purposes of inclusion or exclusion.

Opened the floor for discussion.

Dr. Wanda Jones

Clarified that the committee requested that the National Center for Health Statistics have someone to talk to them about the international classification of diseases, about the process, about how the U.S. adapts the WHO index, the ICD for use and about opportunities for dialogue.

Noted that a meeting was set a year ago for May 10 and 11 in Baltimore that engaged resources for the CMS, parts of the federal government focused on health IT and the entire ICD team from the National Center for Health Statistics (NCHS). Noted that as a result no one was available for the CFSAC meeting.

In lieu of their attendance, she developed some questions that the NCHS, ICD team responded to.

PDF of Dr Jones’ background document here: ICD-related questions from CFSAC for May 2011 meeting
http://www.hhs.gov/advcomcfs/meetings/presentations/icd_ques201105mtng.pdf

Tried to clarify the questions so they would have a good understanding of the key processes and the key inflection points differentiating the WHO process from the U.S. ICD-CM, the clinical modification process.

Raised additional questions regarding how alignment from prior versions is maintained and how ICD coding is used in decision-making. Noted also the relationship between the coding and the diagnostic and statistical manual (DSM).

Stated that the information was provided by the NCHS and is meant to generate discussion.

Stated that the ICD-CM process is a public process with regularly scheduled public meetings. Noted that there is an opportunity to comment as part of that process and to engage. Confirmed that the NCHS stated that there has been no public presence from the CFS community at the meetings. Noted that this was the process for people interested in CFS coding to become involved.

Confirmed that there was a lock procedure that is soon to be executed for the ICD 10 CM. Noted it had been in development for a decade and the United States’ move to electronic records means it has to temporarily lock the codes. The electronic health records software would not be ready if they keep changing them.

Noted that information about coding changes would continue to be collected, taken under advisement and the NCHS would continue the process of evaluating. Stated that once it is in public use then that lock will release and there would be an opportunity on a periodic basis for updating.

Dr. Leonard Jason

Stated that the committees are developing ICD 10 CM and it intends to retain CFS in R codes (R53.82) and this means that the symptoms, signs, abnormal results of clinical or other investigative procedures are ill-defined conditions.

Stated that R-codes means it’s an ill-defined condition regarding which no diagnosis is classifiable elsewhere. Explained that if it cannot be diagnosed elsewhere in ICD 10 it goes into a R-code.

The intention in ICD 11 is to put CFS with two other conditions (post viral fatigue syndrome and benign myalgic encephalomyalitus [sic]) under a G-code, being G93.3 or diseases of the nervous system.

For ICD-11, the proposal is to classify all three terms within Chapter 6 Diseases of the nervous system but these categories may not retain the familiar “G93.3” code.

For ICD-11, the parent class “G93 Other disorders of brain” is proposed to be removed (this will affect many categories classified under or indexed to a code that is currently a child to the G93 parent class in ICD-10).

For ICD-11, categories within Chapter 6 Diseases of the nervous system are being reorganised and different codes have been assigned to Chapter 6 categories to those used in ICD-10. “Chronic fatigue syndrome” is proposed to be an ICD Title code and is currently assigned the code “06L00” in the ICD-11 Alpha Draft, under new parent class “06L Other disorders of the nervous system”.

For ICD-11, “Benign myalgic encephalomyelitis” is specified as an Inclusion term to “06L00 Chronic fatigue syndrome”. A change of hierarchy is recorded in the iCAT Alpha drafting platform for “Postviral fatigue syndrome” and “Chronic fatigue syndrome”.

See Dx Revision Watch report: ICD-11 Alpha Drafting platform launched 17 May (public version) for screenshots from the latest version of the ICD-11 Alpha Draft: http://wp.me/pKrrB-16N

Noted that coding CFS under the R-code in the proposed ICD 10 CM would place it out of line with the International ICD 10 used in over 100 countries. Discussed the problems and implications of the U.S. coding of CFS as compared with how other countries are coding it. It would exclude it from the R53 malaise and fatigue codes, which would imply that CFS does not have a viral etiology.

That last sentence does not make sense. Retaining CFS under the R codes would exclude it from the Chapter 6, G93.3 classification.

Proposals for ICD-10-CM have “chronic fatigue syndrome NOS (R53.82)” specified as an Exclusion to “G93.3 Postviral fatigue syndrome > Benign myalgic encephalomyelitis”.

Proposals for ICD-10-CM have “Postviral fatigue syndrome (G93.3)” specified as an Exclusion to the “R53 Malaise and fatigue > R53.82 Chronic fatigue, unspecified” > Chronic fatigue syndrome NOS codes.

Brought forward a motion to be considered:

CFSAC rejects current proposals to code CFS in Chapter 18 of ICD 10 CM under R53.82 chronic fatigue syndrome unspecified, chronic fatigue syndrome NOS (not otherwise specified). CFSAC continues to recommend that CFS should be classified in the ICD 10 CM in Chapter 6 under diseases of the nervous system at G93.3 in line with international ICD 10 in ICD 10 CA which is the Canadian clinical modification and in accordance with the committee’s recommendation which we made in August of 2005. CFSAC considers CFS to be a multi-system disease and rejects any proposals to classify CFS as a psychiatric condition in U.S. disease classification systems.

Previous CFSAC recommendations for ICD-10-CM had read:

May 2010 CFSAC recommendation: CFSAC rejects proposals to classify CFS as a psychiatric condition in U.S. disease classification systems. CFS is a multi-system disease and should be retained in its current classification structure, which is within the “Signs and Symptoms” chapter of the International Classification of Diseases 9-Clinical Modification (ICD 9-CM).

August 2005 CFSAC recommendation: Recommendation 10: We would encourage the classification of CFS as a “Nervous System Disease,” as worded in the ICD-10 G93.3.

Noted that ME and CFS patients could be potentially vulnerable to the current DSM 5 proposals because those proposals are highly subjective and difficult to quantify. Noted that retaining the CFS in the R-codes in the IDC 10 CM differentiates the U.S. from other countries but it renders CFS and ME patients more vulnerable to some of the DSM 5 proposals, notably chronic complex symptom disorder [sic].

Should be “Complex Somatic Symptom Disorder”, not as above.

Dr. Klimas asked for clarification, and Dr. Jason said that in 2013 they would move from DSM 4 to DSM 5. As it stands they would be collapsing somatization disorder, undifferentiated somatoform disorder, hypochondriasis and some presentations of panic disorder into complex somatic symptom disorder. Dr. Klimas clarified that his concern was that the CFS ICD 9 codes would put the non post viral patients into this somatoform cluster. Dr. Jason indicated that this was so.

Should be “pain disorder” not “panic disorder”.

Dr. Klimas seconded the motion.

Mr. Krafchick agreed and stated that the ramifications of the classification would be disastrous for patients, because it would limit disability payments to two years. Dr. Jones clarified that for now the clock was ticking, however once the codes were released, they could be revised, it’s just the implementation of the electronic system which is causing it to be locked at a particular point in time. While CFSAC has shared concerns with NCHS, there is an official process for engaging with them on their discussions regarding the codes. The US was interested in morbidity, in case claims. It is important that providers know how to best categorize things, and provide guidance on which codes to consider based on the science for the disease being evaluated.

Mr. Krafchick stated that the issue was that the criteria for the codes was etiology/trigger based. Dr. Jones clarified that it would still remain in the clinician’s judgment, however if they could not identify where the trajectory developed toward CFS, then it would wind up in the R codes. Dr. Jones clarified also that the NCHS does not view the R category as a somatoform disorder. Mr. Krafchick and Dr. Snell indicated they understood this but it would still represent vulnerability for patients when classifying.

(The justification given by CDC for not mirroring ICD-10 is this: If the clinician feels there is enough evidence to attribute the patient’s illness to a viral illness, they can code at G93.3; if not, they can code at R53.82 Chronic fatigue syndrome NOS. Testing for a viral illness is not required to assign a code, the coding would be based on the clinician’s judgment.)

Dr. Jason restated his recommendation.

Dr. Marshall stated his concern that there was an attendant risk with this, but that they were between a rock and a hard place. He agreed CFS/ME being classified as a somatoform disorder was inappropriate, but at the same time that the recommendation says it’s a complex multi-system disease, it categorizes it within a single nervous system disease silo. This might affect future research funding opportunities with people saying they don’t fund neurological research. He expressed the view that they should advocate for classification in a multi-system disease category rather than putting it in a nervous system disease category for future, though this category did not exist now. It would be a good thing for patients short term, but it could be a long term risk.

Dr. Snell said that given the amount of current funding, this wasn’t a risk. Dr. Marshall said that using reverse translational research as had been advocated during the meeting might increase the role of this categorization, and could be restrictive in funding.

Dr. Jones asked whether the recommendation being put forward was the same as the May 2010 recommendation, and Dr. Jason said that his was dramatically different. Mr. Krafchick underscored how the insurance companies use these ICD codes. If it was classified in something that could be psychiatric it will be psychiatric, so they can deny coverage.

Dr. Levine asked about co-morbid disorders and how these are weighted. Dr. Jones responded that she did not think that there was a weighting. It would get listed like a death certificate, a cause of death and then a secondary, sometimes a third. She stated it was the judgment of the clinician how it was listed.

Dr. Klimas expressed the view that coding was also problematic because clinicians code to get paid. There already exists a bias against coding CFS as CFS because the codes could not be used for billing. She stated that they would make a conscious decision not to code CFS as CFS. She indicated that neurology was a fine place for it to be categorized, and at least this would assist people who may be looking for patient data, as it wouldn’t be ignored.

Dr. Snell asked for a vote of all those in favor regarding Dr. Jason’s motion. The motion passed unanimously.

Dr. Jones noted that she would share this recommendation with the NCHS but repeated that unless someone moved forward to intervene in the official processes in the public record it may not move forward or have an effect.

Dr. Jones noted that the next ICD meeting is September 14 – 15, 2011 with public comments due July 15. Noted this will be put on the CFSAC website.

A link has been placed on the CFSAC site for the CDC page for information on meetings of the ICD-9-CM Coordination and Maintenance Committee  

She noted she would check the rules to see if a member of the CFSAC or the Chair would be able to give public testimony at another advisory committee meeting. Mr. Krafchick said that if it were possible to send someone as a member of the committee, it would make a great deal of sense and be very important. Dr. Jones said they would figure out how this could happen. Ms. Holderman asked whether this notice, and any future notices where they might want to intervene, could be placed on the CDC website. She stated this cross listing would be useful.

Dr. Jones said that from her experience with the fast evolving HIV coding, there was a dialogue so that coding kept up. She expected there would be some connection, however not as comprehensive or active as that disease.

Dr. Mary Schweitzer, a member of the public, stated that the NCHS did come to CFSAC in 2005 and Dr. Reeves at the time was specific and said that CFS needed to be in R53 due to his own method of diagnosis. She suggested that this showed an obvious connection between the CFS side of CDC and NCHS at the time.

[Discussion of this agenda item ends.]

As these are my notes inserted into an extract from official Minutes, no permission to republish. The Shortlink to this post is http://wp.me/pKrrB-1dP. The PDF of the Minutes for Day One (May 10) is here: CFSAC Minutes 10 May 2011

Related material:

[1] Post: CFS orphaned in the “R” codes in US specific ICD-10-CM: http://wp.me/pKrrB-V4

[2] International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM). Note: The 2011 release of ICD-10-CM is now available and replaces the December 2010 release:
http://www.cdc.gov/nchs/icd/icd10cm.htm

[3] Post: US “Clinical Modification” ICD-10-CM. Article clarifying possible confusion between ICD-10, ICD-11 and the forthcoming US Clinical Modification, ICD-10-CM: http://wp.me/pKrrB-Ka

[4] Chronic Fatigue Syndrome Advisory Committee (CFSAC). The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Minutes of meetings, Recommendations and meeting videocasts:
http://www.hhs.gov/advcomcfs/meetings/index.html

Filed under CFSAC meetings, Clinical Modification, Criticism of DSM-V, DSM-5, DSM revision process, DSM-5 draft proposals, Functional Somatic Syndrome (FSS), ICD-10, ICD-10-CM, ICD-11, ICD-11 Alpha Draft, MUS, Somatic Symptom Disorder, Somatoform Disorders

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