The Dravet Syndrome Foundation (DSF) is promoting awareness of the new global health statistics codes now in effect for Dravet syndrome. Known as “ICD-10” codes, the designations could bring about improved patient outcomes and scientific knowledge of this severe type of epilepsy.
The DSF is encouraging those living with the disorder to help spread word of the designations by informing their providers. In coming weeks, the DSF will be mailing Dravet community members packages that will include business cards with the new codes.
“Dravet syndrome is a unique disorder that has a characteristic presentation of symptoms requiring medical interventions, and Dravet syndrome also has important medical contraindications that would not be attributed to a nonspecific diagnostic code like ‘other epilepsy,’” the DSF states on its website.
The code designation specifically for Dravet, which was created last fall, was due to efforts by the DSF and its medical advisory board, comprised of Dravet specialists. Before that, the disease was lumped in with a broad group of epileptic conditions with different causes and treatment strategies, under the code G40.8.
What are known as International Statistical Classification of Diseases and Related Health Problems (ICD) are designated by the National Center for Health Statistics. The new codes are designed to be used by healthcare professionals when caring for a Dravet patient.
The three new ICD-10 codes are: G40.83 for Dravet syndrome; G40.833 for Dravet syndrome, intractable, with status epilepticus; and G40.834 for Dravet syndrome, intractable, without status epilepticus. Status epilepticus, common in Dravet, refers to epileptic episodes in which either an individual seizure lasts longer than five minutes, or many seizures occur close together without the patient recovering between them.
The dedicated codes are expected to make it easier for specialists in the field to conduct research, determine prevalence, morbidity and mortality rates, and recruit patients for clinical trials. They also will help scientists and clinicians track treatment outcomes and establish protocols for standard care.
“Having a unique code for a rare disease like Dravet syndrome is particularly important for increasing understanding of the medical course and best treatment approaches for patient,” the DSF states.
The ICD is the cornerstone for the identification of health trends and statistics globally, and the international standard for reporting diseases and health conditions. Diseases and conditions are listed in a way that allows for easy storage, retrieval, and analysis of health information for evidence-based decision making. Health information can be shared and compared among clinical settings, regions and countries.
The ICD-10 codes are called that because they refer to classification codes listed in the 10th revision of the ICD, a medical classification maintained by the World Health Organization and distributed internationally. About 27 countries use ICD-10 to document patients’ medical conditions for epidemiology, research, and health insurance billing and reimbursement. By definition, epidemiology is the scientific and systematic study, driven by data, of the frequency, pattern, causes, and risk factors of health-related states and events in specified populations.
Twice a year — in March and September — federal officials, industry leaders and advocates meet in Baltimore to consider additions and revisions to ICD-10.
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