ICD-10 Directory Changes – What is the impact on Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorder (HSD)

Posted December 17, 2019

In the summer of 2019 it was announced that there were changes to codes in the ICD-10 directory. We wanted to update our community with what that means going forward. 

The ICD is owned by the World Health Organisation (WHO). The 5th edition of ICD-10 was published by the WHO in 2016. Many countries use the ICD directory; and some have modified it to better meet their needs. The WHO describes the ICD directory as: The global health information standard for mortality and morbidity statistics, increasingly used in clinical care and research to define diseases and study disease patterns, as well as manage health care, monitor outcomes and allocate resources.You can read more about the WHO ICD directory here.

Additional ICD-10 codes were considered in 2016, approved by the WHO in 2017, and are being implemented in 2019/20. In EDS (code 7960) the directory has been expanded from just EDS to now include ‘undifferentiated’ (79.60), ‘classical’ (79.61) ‘hypermobile’ (79.62), ‘vascular’ (79.63), and ‘other’ (79.69). When the ICD-10 directory used in your country is updated, we understand that these codes will be available.

We are very pleased that progress was made at the time of the last review, but given the 2017 International Classification, we would like to see future editions of the ICD reflect the wider EDS family.

Given the timelines described above it can be seen why there is no specific code for HSD at this time in ICD-10. In 2018, the WHO released a version of the ICD-11 directory that will replace ICD-10. This was developed in 2016/17. It was approved by the World Health Assembly in May this year, and ICD-11 will apply from 2022. 

Reviewing the information provided by the WHO we have learned that the committees that undertook the work on the revision of ICD-10 to become the ICD-11 have closed. Moving forward there is a Classification and Statistics Advisory Committee (CSAC) that advises the WHO on the maintenance and development of ICD-11.

The Society is working with experts in the International Consortium to see when we can submit an application for specific coding for HSD. We believe it will require a submission to the CSAC or an appointed sub-committee, and for them to consider and then inform the WHO of their recommendations. 

At present, under ‘Musculoskeletal Conditions’ in the ICD-10 directory there are codes for hypermobility syndrome (code M35.7); the related musculoskeletal concerns (e.g. M20 – M25); the different types of pain experienced by our community (M25); and muscle and soft tissue injuries (M60 – M79). There are also codes for the related conditions that are not musculoskeletal but seen in HSD and EDS; for example, PoTS (I49.8)  fatigue (R53), and disorders of the digestive system (K53 – K64). 

The Society understands that healthcare professionals and organisations can use these different codes to document the nature of concerns that arise.

We hope this information is helpful to our community in understanding the current situation and the way forward.

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