CFSAC November 2011 meeting: videos, presentations and coding of CFS in ICD-10-CM

CFSAC November 2011 meeting: videos, presentations and Day One Agenda item:

International Classification of Diseases – Clinical Modification (ICD-CM): Presentation by Donna Pickett, RHIA, MPH, National Center for Health Statistics (NCHS)

Post #118 Shortlink: http://wp.me/pKrrB-1xk

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).

The two day fall meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) took place on Tuesday, November 8 and Wednesday, November 9, 2011 at a new venue – the Holiday Inn Capitol, Columbia Room, 550 C Street, SW, Washington, DC.

No live video streaming

In May 2009, a precedent was set for the entire proceedings of CFSAC meetings to be streamed as real-time video with videocasts and auto subtitling posted online a few days after the meetings have closed.

Prior to the November meeting, CFSAC Committee Support Team had clarified that the commitment to providing real-time video streaming could not be met (later said to be due to budgetary constraints) and that a phone link would be provided instead – an option not available to those of us outside the US – and that a high quality video of the two day proceedings would be posted within a week. In the event, videos for Day One and Day Two of the meeting were not posted within this timeframe.

International Classification of Diseases  – Clinical Modification (ICD-CM):
Presentation by Donna Pickett, RHIA, MPH, National Center for Health Statistics (NCHS)

The Agenda items that have the most relevance for Dx Revision Watch site are the presentation on Day One by Donna Pickett (NCHS) and the Committee’s formulation on Day Two of a revised CFSAC Recommendation to HHS on the coding of CFS in the forthcoming ICD-10-CM.

The video for that section of the meeting wasn’t published on YouTube until November 17, just one day prior to the closing date for submission of comments on the proposals for the coding of CFS in ICD-10-CM put forward by the Coalition4ME/CFS for NCHS consideration and an alternative option presented by NCHS at the September 14, 2011 meeting of the ICD-9-CM Coordination and Maintenance Committee [1].

This meant that many of those compiling comment for submission before the November 18 deadline who had not attended the CFSAC meeting in person were unable to use Ms Pickett’s presentation to inform their submissions as they were not aware that the videos for Day One had been published or would have already submitted their comments.

Ms Pickett’s presentation slides can be viewed here in PDF format: PowerPoint Slides

The video of Ms Pickett’s presentation can be viewed below or on YouTube:

Uploaded by WomensHealthgov on 17 Nov 2011
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, Day 1, November 8, 2011. 9am to 11:15am. Opening Remarks, International Classification of Diseases-Clinical Modification (ICD-CM), and Public

During her presentation, Ms Pickett had outlined the two proposals under consideration (Option 1 and Option 2) but the slide for the NCHS’s suggestion (Option 2) omits the suggested Excludes.

Note also that the presentation slides did not set out that NCHS has suggested the inclusion term “Chronic fatigue syndrome NOS” under a suggested subcode, “G93.32 Chronic fatigue syndrome”. 

I consider Option 2 (NCHS) to be problematic for a number of reasons and I was unable to support the NCHS’s suggestion. I could not support:

• the suggested revision of the existing ICD Title term “G93.3 Postviral fatigue syndrome” to “G93.3 Postviral and other chronic fatigue syndromes”;

• the inclusion of term “Chronic fatigue syndrome NOS” included under “G93.32 Chronic fatigue syndrome”;

• the specification of class 2 exclusions, that is, “Excludes2” rather than “Excludes1”.

If consideration were being given to the creation of separate subcodes or child categories to a revised parent G93.3 class, then I would prefer to see three discrete subcodes under G93.3, one for each term, in the order: G93.31 Postviral fatigue syndrome; G93.32 Myalgic encephalomyelitis (Benign); G93.33 Chronic fatigue syndrome under an alternative term to the suggested parent term, “G93.3 Postviral and other chronic fatigue syndromes”.

Given that I consider NCHS Option 2 to be problematic and given that no alternatives appear to be currently under consideration by NCHS, I submitted a comment supporting Option 1 (Coalition4ME/CFS), with two caveats:

a) That any excludes specified are Excludes1 not Excludes2

b) That consideration is given by NCHS to specifying two exclusion terms beneath G93.3

Excludes1 chronic fatigue, unspecified (R53.82)
                 neurasthenia (F48.8) 

I have reviewed the September ICD-9-CM Coordination and Maintenance Committee meeting audio [5] and do not consider there had been adequate discussion at the meeting of the implications for the inclusion of a “Chronic fatigue syndrome NOS (Not Otherwise Specified)” coded to a suggested subcode “G93.32 Chronic fatigue syndrome”.

The implications for this suggestion do not appear to have been discussed publicly at the November CFSAC meeting nor were the potential implications for the use of “Excludes2” class excludes raised during public discussion.

New CFSAC November 2011 Meeting Recommendation

The Minutes for the November CFSAC meeting and the approved Recommendations formulated at that meeting are not yet published on the CFSAC site. [Update @ March 27, 2012: Minutes are available here ]

At the May 2011 meeting, following discussion of the ICD-10-CM CFS coding issue and concerns for the current proposals of the DSM-5 Somatic Symptom Disorders work group, the following Recommendation had been proposed by Dr Lenny Jason and voted unanimously in favour of by CFSAC committee:

 http://www.hhs.gov/advcomcfs/recommendations/05112011.html 

The CFSAC May 2011 Recommendation:

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.)

Following committee discussions at the November meeting, this May 2011 Recommendation was reviewed and expanded on to reflect the developments at the September 14 meeting of the ICD-9-CM Coordination and Maintenance Committee and CFSAC committee’s views on the two Options that have been proposed and are under consideration.

CFSAC committee member and disability attorney, Steven Krafchick, read out a motion for a new Recommendation which was proposed and voted unanimously in favour of:

The CFSAC November 2011 Recommendation:

CFSAC considers CFS to be a multi-system disease and rejects any proposal to classify CFS as a psychiatric condition in the US disease classification systems.

CFSAC rejects the current classification of CFS in Chapter 18 of ICD-10-CM under R53.82 – chronic fatigue,  unspecified > chronic fatigue syndrome Not Otherwise Specified.

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 (the World Health Organization) and ICD-10-CA (the Canadian Clinical Modification), and in accordance with the Committee’s recommendations of August 2005 and May 2011.

CFSAC rejects the National Center for Health Statistics Option 2 and recommends that CFS remain in the same code and the same subcode as [benign] myalgic encephalomyelitis because CFS includes both viral and non-viral triggers.

CFSAC recommends that an “Excludes1” be added to G93.3 for chronic fatigue – R53.82 and neurasthenia – F48.0.* CFSAC recommends that these changes be made in ICD-10-CM prior to its roll out in 2013.

*Ed: Note: CFSAC committee has been advised that the discrete code for Neurasthenia in ICD-10-CM Chapter 5 is F48.8 not F48.0, as had been read out at the meeting. I am informed that the new Recommendation is being amended.

Watch a video clip for the Recommendation, here:

Uploaded by coalition4mecfs on 17 Nov 2011
CFSAC Committee Recommendation on the ICD-10 -11/9/2011

Watch discussion of Recommendation and vote here: [1 hr 12 mins from start]

CFSAC November 9, 2011, 1:30 pm – 4:30 pm

Uploaded by WomensHealthgov on 18 Nov 2011
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, Day 2, November 9, 2011. 1:30pm to 4:30pm. Public Comment and Committee Discussion to Finalize Recommendations

Request for clarification 

During her presentation to CFSAC, in response to a query from the floor, Ms Pickett had clarified that the comments being received by NCHS were not being reviewed until after the closing date for submissions (November 18) and that a decision about the proposals would be made in December. At the time of publication, no decision has been made public and it is not known whether any decision has been arrived at.

On December 18, I emailed Ms Pickett and asked if she could advise me by what date a decision is expected to have been made following review and consideration of the comments on proposals for the coding and chapter placement of Chronic fatigue syndrome for ICD-10-CM that were received by her office between September 14 and November 18.

On the CDC website it states that:

“The ICD-9-CM Coordination and Maintenance Committee’s role is advisory. All final decisions are made by the Director of NCHS and the Administrator of CMS. Final decisions are made at the end of the year and become effective October 1 of the following year.”

I also asked Ms Pickett if she would clarify if this meant that any decision arrived at by the Coordination and Maintenance Committee is advisory only and whether a final decision would be made by the Director of NCHS and Administrator of CMS; if this is the case, by what date would their decision expect to be made and by what means would a decision be made public.

I will update when I have a response from Ms Pickett and/or when any decision has been reached and announced.

Key documents from the November CFSAC meeting

CFSAC Meetings Page

November 8-9, 2011 CFSAC Meeting Agenda

Presentations

Videos of proceedings

Day One: Tuesday, November 8, 2011

CFSAC November 8, 2011; 9:00 – 11:15 am |  Presentation by Donna Pickett, NCHS  Presentation slides 
CFSAC November 8, 2011; 11:30 am – 1:00 pm |
CFSAC November 8, 2011, 2 pm – 4 pm |
CFSAC November 8, 2011, 4 pm – 5 pm |

Day Two: Wednesday, November 9, 2011

CFSAC November 9, 2011, 9 am – 10:30 am | 
CFSAC November 9, 2011, 10:45 am – 1:15 pm |
CFSAC November 9, 2011, 1:30 pm – 4:30 pm |  Discussion of wording of Recommendation at 1hr 12mins

Presentations

Tuesday, November 8, 2011

Donna Pickett, CDC  International Classification of Diseases – Clinical Modification (PDF– 91.8 KB)

Future Interdisciplinary Research for ME/CFS that Require a Variety of Scientific Disciplines (PDF –  1,008 KB)

Wednesday, November 9, 2011

International Classification of Functioning, Disability and Health: Application and Relevance to Chronic Fatigue Syndrome (PDF – 1 MB)
CDC Report for CFSAC – CFS Activities Since May 2011 (PDF – 208 KB)
Minimum Data Elements for Research Reports on CFS (PDF – 1,016 KB)
NIH Report for CFSAC (PDF – 241 KB)

Public Testimony 

See this CFSAC page for list of Public Testimony and PDFs of testimonies for

Day One: Tuesday, November 8, 2011
Day Two: Wednesday, November 9, 2011

See this CFSAC page for PDFs of Written Testimony Received Prior to the Meeting Date.

Marly Silverman’s Public Testimony on behalf of the Coalition4ME/CFS on the issue of the proposed coding of CFS in the forthcoming US specific ICD-10-CM:

http://www.hhs.gov/advcomcfs/meetings/presentations/publictestimony_201111_sillverman.pdf

The two proposals

The Coalition4ME/CFS had submitted a proposal to NCHS, prior to the September meeting, requesting that Chronic fatigue syndrome be deleted as an inclusion term under code R53.82 Other malaise and fatigue (Chapter 18 Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified) and that the term be added as an inclusion term under code G93.3 Postviral fatigue syndrome (Chapter 6 Disorders of the nervous system).

The Coalition 4 ME/CFS had also requested that their proposal be considered for October 1, 2012 so that the change occurs prior to the October 1, 2013 implementation date of ICD-10-CM even though the condition is not a new disease.

Ed: Note: Option 1 (Proposal by the Coalition4ME/CFS) does not display the term Benign myalgic encephalomyelitis under G93.3 Postviral fatigue syndrome. This is because no change to the placement of this term was being requested by the Coalition4ME/CFS, that is, there was no proposal to Add, Delete or Revise the term Benign myalgic encephalomyelitis other than a request that consideration be given to placing the ICD-10 descriptor “Benign” at the end of the term, as “Myalgic encephalomyelitis (Benign)”.

[Image source: Page 11, Diagnosis Agenda: ICD-9-CM Coordination and Maintenance Committee Meeting September 14, 2011  http://www.cdc.gov/nchs/data/icd9/TopicpacketforSept2011a.pdf ]

Ed: Note: At the September 14, 2011 ICD-9-CM Coordination and Maintenance Committee meeting, there had been some brief discussion of whether class 1 excludes (Excludes1) were more appropriate than class 2 excludes (Excludes2). Clarification of the difference between the terms follows:

Source: ICD-10-CM TABULAR LIST of DISEASES and INJURIES, Instructional Notations 

Excludes Notes

The ICD-10-CM has two types of excludes notes. Each note has a different definition for use but they are both similar in that they indicate that codes excluded from each other are independent of each other.

Excludes1

A type 1 Excludes note is a pure excludes. It means “NOT CODED HERE!” An Excludes1 note indicates that the code excluded should never be used at the same time as the code above the Excludes1 note. An Excludes1 is for used for when two conditions cannot occur together, such as a congenital form versus an acquired form of the same condition.

Excludes2

A type 2 excludes note represents “Not included here”. An excludes2 note indicates that the condition excluded is not part of the condition it is excluded from but a patient may have both conditions at the same time. When an Excludes2 note appears under a code it is acceptable to use both the code and the excluded code together.

References

[1] Meeting materials September 14, 2011 meeting of the ICD-9-CM Coordination and Maintenance Committee 

[2] Coding CFS in ICD-10-CM: CFSAC and the Coalition4ME/CFS initiative

[3] Extracts from Diagnosis Agenda: ICD-9-CM Coordination and Maintenance Committee Meeting September 14, 2011 (Coding of CFS in ICD-10-CM)     [Post sets out proposals: Option 1 from Coalition4ME/CFS and Option 2 from NCHS, which are also set about below.]

[4] Extracts: ICD-9-CM Coordination and Maintenance Committee Meeting Summary of Diagnosis Presentations September 14, 2011 (CFS Coding)

[5] Audio of September 14 NCHS ICD-9-CM meeting http://www.cms.gov/ICD9ProviderDiagnosticCodes/Downloads/091411_Meeting_Audio.zip

[Note this audio downloads as a large Zipped file.  The section for discussions on CFS coding starts at 2 hours 27 minutes in from start and ends at 3 hours 02 minutes.]