Share this code with all of your medical professionals!

These are important – read why here:

5p- syndrome ICD-10 Code:  Q93.1 ICD-10 code Q93.1 falls under the category Q93: Chromosomal abnormalities, not elsewhere classified.Having an ICD-10 code will help our patients get access to services, medicines and attention more easily. As a 5p- syndrome family member or caregiver, you need to make your clinician aware and ask them to add this diagnosis code to the medical record.

What is an ICD-10 code?

ICD stands for The International Statistical Classification of Diseases and Related Health Problems. ICD codes help document a patient’s medical condition and provide information about the disease, diagnosis, all symptoms and related procedures. Each specific injury, disease, or condition within an ICD system has its own code. ICD codes are important for health insurance reimbursement, tracking the number of patients with a certain disease or condition, and  research. Also, a SYNGAP1 ICD code helps doctors, insurance companies, and other providers take our patients’ disease seriously. Only about 500 of the known 7,000 rare diseases have an ICD code so far.The ICD system is governed jointly by the World Health Organization (WHO), the Centers for Medicare and Medicaid Services (CMS), and the Centers for Disease Control and Prevention (CDC). First introduced in 1948 and updated on a regular basis, it is now in its 10th edition.

Why is this so important?

Without an ICD9 code, our patients would have to accumulated codes for their symptoms: hypotonia, developmental delay, etc. Those codes are adequate for insurance billing and to obtain some services, but they don’t provide a way to accurately track or learn from 5p- syndrome patients and their experiences across healthcare systems. There hasn’t been a way to indicate in a medical record in any measurable way, “This patient has 5p- syndrome.”

Having a unique ICD code for 5p- syndrome will provide valuable insights into the actual number and demographics of patients, the range and severity of their symptoms, the types of treatments, testing, and services they are receiving, and the impact that interventions are having. The code could help simplify and streamline the insurance approval process for patients, making it easier to receive the most appropriate and beneficial care. 

And further, being able to report accurately on the high costs associated in caring for 5p- syndrome patients could motivate and foster more research, quickening the development of new therapies and treatments. Once tangible numbers are available, the urgency we feel as the 5p- syndrome community will spread.

“How can I help?”

We ask families and caregivers to ask their healthcare providers to include the ICD9 code for 5p- syndrome. Ask every doctor, specialist, therapist, and hospital to add the code Q93.1 to patient records and insurance claims. Let’s get this code into the medical record of every 5p- syndrome patient!

Why is this only in the US? There are 5p- syndrome patients everywhere.

Good question. ICD codes are published by the WHO and then adopted by countries. ICD-10 was first endorsed by the WHO in 1990, but no adopted in the US until 2015. New diseases are created and codes needed each year, so after adopting ICD-10, individual countries do updates annually. Q93.1 is a US update to our version of the ICD-10 codes. We encourage advocates in other countries to use this example as a way to request the same code in your country.

The way we get one code worldwide is by working with the WHO on including 5p- syndrome in ICD-11. WHO ICD-11 Maintenance Platform. The ICD-11 Code for 5p- syndrome is QA35.0.

‍What is an ICD code?

ICD stands for The International Statistical Classification of Diseases and Related Health Problems. ICD codes help document a patient’s medical condition and provide information about the disease, diagnosis, all symptoms and related procedures. Each specific injury, disease, or condition within an ICD system has its own code. ICD codes are important for health insurance reimbursement, tracking the number of patients with a certain disease or condition, and  research. Also, a SYNGAP1 ICD code helps doctors, insurance companies, and other providers take our patients’ disease seriously. Only about 500 of the known 7,000 rare diseases have an ICD code so far.

How does an ICD code help 5p- syndrome patients? 

Without an ICD code for 5p- syndrome, the ICD systems and industry databases typically just see our patients as suffering from epilepsy and/or intellectual disability. This view overlooks the many different symptoms and challenges that SYNGAP1 entails. For example, if a request is put in for a person with 5p- syndrome to have a sleep study without a 5p- syndrome ICD code, an insurance company may say that neither epilepsy nor intellectual disability help justify a sleep test for a 5p- syndrome patient. As a result, they may reject the request. However, with a 5p- syndrome ICD code, the insurer will be able to look up the disease and immediately know 5p- syndrome includes clear sleep issues and that they should approve the request. 

The history of ICD codes

Since 1946, the World Health Organization (WHO) has been in charge of ICD codes, and they publish new ICD versions as needed to keep the system up to date and effective. To get a sense of how often new ICD version are published, here is a useful image:

Currently, a new ICD version is published every 10-25 years. As shown above, the US is typically delayed in their adoption of the latest version. The US’s transition to ICD-10 (the version in use today) took the longest (23 years), and the US was the last member of the World Health Assembly (WHA) to implement this new version. We expect the US to again be delayed in their implementation of ICD-11, especially because ICD-10 only went into effect here 6 years ago.

How ICD-11 differs from ICD-10

ICD-11 is not simply an edited form of ICD-10; it is an entirely different system/version. For example, ICD-10 includes 14,400 codes for injuries, diseases and causes of death, while ICD-11 includes 55,000 of these codes. However, ICD-10 codes are not simply a subset of ICD-11 codes. ICD-10 has 11 groupings for disorders while ICD-11 has 21 groupings. There are also completely new chapter structures, diagnosis categories, and diagnosis criteria. It’s the first fully electronic version with new browsing, mapping and proposal tools. Overall, ICD-11 is more specific, sophisticated, advanced, and technologically friendly. 

Why our ICD-10 code doesn’t just transfer over to ICD-11‍

In 1992, WHO published their version of ICD-10. Each country could then incorporate ICD-10 into their country at their own pace. Also, each country could make certain adjustments or amendments as necessary to the published ICD-10 version in order to fit their country’s specific needs. So, the version WHO publishes acts like a template for countries. Part of why the US took so long to transition into using ICD-10 was that it had to be edited to fit the complexity of the US medical system. Also, insurance companies, hospitals, and healthcare providers resisted the transition due to the extra work and expenses it entailed. It’s estimated that a large institution (400+ beds) would acquire up to $5 millino in costs to transition from ICD-9 to ICD-10.  . 

Another important point to remember, as mentioned previously, is that ICD-11 is not simply an edited/updated form of ICD-10. It is an entirely different version with significantly more/different categories, sub-categories, and codes and it is more specific and technically advanced.

In other words:

  • The US code for 5p- syndrome in ICD-10 means nothing in other countries.

  • The ICD-10 code will not automatically transfer to ICD-11. 

References

Topaz M, Shafran-Topaz L, Bowles KH. ICD-9 to ICD-10: EVOLUTION, revolution, and current debates in the United States. Perspectives in health information management. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3692324/. Published April 1, 2013. Accessed August 16, 2021. 

Wagner B. Moving to icd-11. KIWI. https://kiwi-tek.com/resources/medical-coding-blog/moving-to-icd-11/. Published February 11, 2020. Accessed August 16, 2021. 

SJ. What are icd-10 codes? Medium. https://blog.getbetter.co/what-are-icd-10-codes-529a00d24a3c. Published January 24, 2019. Accessed August 16, 2021. 

Michael Bihari MD. Learn about insurance codes to avoid billing errors. Verywell Health. https://www.verywellhealth.com/learn-about-insurance-codes-to-avoid-billing-errors-1738628. Published June 6, 2021. Accessed August 16, 2021. 

Caux-Harry R. It is coming: Icd-11 released. 3M Inside Angle. https://insideangle.3m.com/his/blog-post/it-is-coming-icd-11-released/. Published July 10, 2018. Accessed August 16, 2021. 

Gaebel W, Stricker J, Kerst A. Changes from Icd-10 to Icd-11 and future directions in PSYCHIATRIC CLASSIFICATION. Dialogues in clinical neuroscience. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7365296/. Published March 2020. Accessed August 16, 2021. 

Production of icd-11: The overall revision process. https://www.who.int/classifications/icd/ICDRevision.pdf. Accessed August 16, 2021.