Request for Feedback on Lipedema ICD-10-CM Codes for NCHS

I am preparing a submission for the addition of specific lipedema codes for publication on Oct. 1 2021 to The National Center for Health Statistics (NCHS). Specific lipedema codes are needed for identification, tracking, and research. There are two due dates for feedback: June 12, 2020 and then September 2020. Please contact us if you have any thoughts on this matter.

In general the submission is no more than two pages, with a concise overview of the disease/condition, rationale for the request, and research to back up the need for the new codes. Currently (June 2020) there is no specific ICD-10-CM code for lipedema. If you know anyone who might be interested please forward this to them.

If you search for lipedema in the ICD-10-CM index you find:

Lipedema – see Edema

Edema

legs R60.0

legs R60.0 due to venous obstruction I87.1

legs R60.0 hereditary Q82.0

In June 2020, R60.0, a sign and symptom code, and Q82.0, a congenital disease code are used by different practitioners depending on their training and perception of lipedema.

The congenital code: Q82.0 is also used for Lymphedema (acquired) – see also Elephantiasis. This is a separate condition.

Some clinicians consider adiposis dolorosa, E88.2 to be synonymous with lipedema [Herbst, et al]. However this code lacks the specificity of the clearly defined stages of lipedema (1-3). Also, it’s not in the ICD-10-CM Index and, from my research, the code currently least-used for lipedema.

Our request would be to add the ICD-10 lipedema codes currently used by Germany to the 2022 ICD-10-CM (published Oct 1 2021). These expand on the E88.2- code above and provide the specificity need for tracking, research and management of lipedema. The German codes spell lipedema as lipoedema. We would use the American spelling.

E88.28 Other or unspecified lipedema [this code is often used for Stage 4 known as lipo-lymphedema, a serious progression of the disease.

Questions for You: Are the ICD-10 codes used in Germany sufficient? Should we request any change for the USA codes? Would we be better requesting a single lipedema code to not confuse many clinicians not familiar with the stages?

I also want to make the best argument why the current lipedema codes are inaccurate and insufficient. In our submission we will include a concise explanation of what lipedema is and how it differs from edema, Dercums, lymphedema and why the new codes are needed for tracking and research.

There appears to be some confusion concerning lipolymphedema and STAGE 4. The German ICD-10 codes do not specify a lipedema STAGE 4 code, but rather E88.28: other or unspecified lipedema. Should the United States request a separate, specific code for lipolymphedema (E88.23)?

STAGE 4: Development of lipolymphedema—a condition where both lipedema and lymphedema are present in the body—with large overhangs of tissue on legs and/or arms. [https://www.lipedema.org/staging]

Lymphedema occurs at any stage, especially Stage 3, called lipo-lymphedema. Liposuction for Lipedema (Persistent Fat) in the US Improves Quality of Life (Cobos L et al., 2019).

Do you consider code I89.0: Lymphedema (acquired), praecox, Lymphedema (acquired), secondary as synonymous/sufficient for lipo-lipedema? Should we request lipo-lipedema be added to the code description and ICD-10-CM Index?

If you wish to be part of this review process, please send us an email via the contact form and I will send you the complete ICD-10-CM lipedema code submission due June 12, 2020. It will be about three pages.

Thank you for your consideration.

Jeffrey Restuccio, CPC, COC) [certified medical coder, auditor, and reimbursement expert]

(901) 517-1705