Query purpose:
The Cognition and Central Nervous System Disability (v1) definition is part of a group of eight definitions (seven domain-specific and one overall) to identify emergency department visits by people with disabilities using a set of criteria based on diagnostic codes, including ICD-9, ICD-10, SNOMED codes, and keywords representing patient reason for visit. These definitions can be used to disaggregate monitored health outcomes by disability status and type and will ultimately help improve emergency and ongoing surveillance efforts. We encourage National Syndromic Surveillance Program (NSSP) Community of Practice (CoP) members to work with disability organizations and members of the disability community within their jurisdictions when using the definitions, interpreting results, and developing recommendations based on these findings. This definition was tested and intended to run on the “CC and DD parsed free text” field in ESSENCE.
How it was developed:
The Association of State and Territorial Health Officials (ASTHO) worked collaboratively with CDC and the Council of State and Territorial Epidemiologists (CSTE)-led NSSP CoP to create diagnostic code-based definitions to identify emergency department visits from people with disabilities through a stakeholder-informed process. ASTHO, with support from Thought Bridge LLC, collected stakeholder feedback through a two-step process to inform the development of diagnostic code- and chief complaint-based definitions for disability to be used in NSSP. This two-step process included key informant interviews (KIIs) followed by five scientific panel sessions to inform definition development and broader dissemination efforts to promote uptake of the definitions. See Overall Disability (v1) Definition Fact Sheet & Technical Brief for a full description of definition development methods.
We used the following developed definitions from the CCW to develop the Cognition and Central Nervous System domain. If only ICD-10 was available in a definition, we used the prior version for ICD-9:
- Epilepsy
- Stroke/Transient Ischemic Attack
- Traumatic Brain Injury and Nonpsychotic Mental Disorders due to Brain Damage
- Alzheimer's Disease
- Non-Alzheimer's Dementia
- Parkinson's Disease and Secondary Parkinsonism
Using this initial set of codes, we abstracted relevant ICD-10 codes following inclusion criteria. An initial set of codes provided by CDC for identifying persons with intellectual or developmental disability coded for conditions, such as epilepsy and seizures in their code set. Since these codes fit more closely in this domain, rather than IDD, we included them here. Most of these codes overlap with the CCW definitions for epilepsy. Two codes not included in the existing mental health disorders domain, include nonpsychotic mental disorders due to brain damage, and other specified nonpsychotic mental disorders following organic brain damage. They are included here as sequelae of cognitive and nervous system disorders.
Keywords were developed from feedback following the third and fourth scientific panels, and from keywords included in the Washington Group Short Set related to cognition. Following state and local pilot testing, we excluded additional terms and excluded specific ICD-10 codes that were leading to false positive results.
Plain language syntax Description:
This definition has some limitations, including some false positives that remain (though infrequently).
Additionally, there are at least five limitations common to the Disability Overall (v1) definition and all seven disability domain-specific definitions. First, identifying people with disabilities as a demographic using diagnostic codes follows a medical model of disability, and does not capture the social or identity-based aspects of disability preferred by many disability advocates. However, NSSP-ESSENCE is limited by the information routinely collected in the medical record such as diagnostic codes and notes captured as “chief complaint” to document presenting medical and relevant information for the visit. Future efforts to also include self- or other-report of functional disability collected as a demographic at the point of care may inform refinements to these definitions. Second, diagnostic codes do not map directly to functional limitations and a person may have more than one disability type, yet only discuss certain chief complaints during an ED visit. However, we can assume that certain conditions can be reasonably expected to produce functional limitations (e.g., someone with muscular dystrophy could reasonably be categorized as having a mobility disability). Third, coding practices can vary by region, hospital, and provider. Fourth, this method depends on factors outside the provider’s control (billing considerations; EMR systems such as Epic or Cerner may have limits on how many dx codes can be listed under a visit). As a definition that is dependent on secondary diagnosis codes for detection not necessarily captured by the chief complaint, the ability to identify a person with a disability is influenced by the number of diagnosis codes a facility submits for syndromic surveillance. Therefore, this definition may be better able to identify people with disabilities in better resourced facilities, while data from lower cost EMR systems may be more likely to underrepresent the disability community. Fifth, many people with disabilities will be missed using this method as it relies on existing data collected on electronic health records (EHR), rather than standard self-reported questions that are commonly used to identify people with disabilities. People presenting to an emergency department for a health crisis or emergency may not have disability-related diagnoses indicated on their EHR, because their disability was not recognized by the provider and/or disclosed by the patient. Mild (or non-apparent) disabilities and/or disabilities unrelated to the reason for the ED visit may be more frequently under-documented than more apparent disabilities or those directly associated with the reason for visit.
The definitions can be used to identify important trends and serve as a “signal” of group variation for key outcomes of interest. However, NSSP users must be aware that results are likely an incomplete indicator of disability status or type. Despite limitations, these definitions can help serve as a stopgap to identify people with disabilities within NSSP-ESSENCE while we work collectively to address systemic issues related to collecting disability as a demographic at the point of care.
This definition was tested and intended to run on the “CC and DD parsed free text” field in ESSENCE.
Cognition and Central Nervous System
- ICD9
- (,^;43[01456];^,or,^;43[01456][0-9];^,or,^;43[01456][0-9][0-9];^,or,^;433[012389];^,or,^;99702;^,or,^;2904;^,or,^;29410;^,or,^;2941;^,or,^;2941[0-9];^,or,^;310;^,or,^;310[0-9];^,or,^;310[0-9][0-9];^,or,^;331;^,or,^;331[0-9];^,or,^;331[0-9][0-9];^,or,^;345;^,or,^;345[0-9];^,or,^;345[0-9][0-9];^,or,^;36816;^,or,^;7800[13];^,or,^;7846;^,or,^;78469;^,or,^;7845[129];^,or,^;907;^,or,^;907[0-9];^,or,^;907[0-9][0-9];^,),ANDNOT,(,^;800;^,or,^;800[0-9];^,or,^;800[0-9][0-9];^,or,^;8049;^,or,^;8049[0-9];^,or,^;850;^,or,^;850[0-9];^,or,^;850[0-9][0-9];^,or,^;8541;^,or,^;8541[0-9];^,)
- ICD10
- ^;G45[01289]^,or,^;G46^,or,^;G973[12]^,or,^;I6[013456]^,or,^;I678[49]^,or,^;I978[12]^,or,^;S0190XA^,or,^;S02[0123][0129X][0-9X][AB]^,or,^;S02[89][0-9X][0-9X][AB]^,or,^;S0211[GH][AB]^,or,^;S0212[129][DGKS]^,or,^;S024[0-9][0-9A-B][AB]^,or,^;S026[0-9][0-9X][AB]^,or,^;S028[345][129X][DGKS]^,or,^;S06[012]X[1-9][AB]^,or,^;S06[456]X[0-9]A^,or,^;S063[0-9][0-9]A^,or,^;S068[129][0-9]A^,or,^;S069X[0-9]A^,or,^;Z51.89^,or,^;A06A1^,or,^;F01^,or,^;F028[12]^,or,^;F03^,or,^;F05^,or,^;F070^,or,^;F078^,or,^;F482^,or,^;G13^,or,^;G20^,or,^;G21^,or,^;G30^,or,^;G31^,or,^;G318[12459]^,or,^;G40^,or,^;G454^,or,^;G90[A04589]^,or,^;G94^,or,^;G97[45]^,or,^;I67850^,or,^;I68858^,or,^;R40243^,or,^;R403^,or,^;R414^,or,^;R418[49]^,or,^;R470[0-2]^,or,^;R471^,or,^;R478[129]^,or,^;R479^,or,^;R48[1389]^,or,^;S04[0-9][0-9][0-9X]S^,or,^;S060-9][0-9X][0-9]S^,or,^;S06A0^
- SNOMED
- ^;29164008;^,or,^;25762009;^,or,^;271721006;^,or,^;26929004;^,or,^;79631006;^,or,^;19598007;^,or,^;278510009;^,or,^;407675009;^,or,^;230390002;^,or,^;84757009;^,or,^;241006;^,or,^;6204001;^,or,^;270907008;^,or,^;195230003;^,or,^;195190007;^,or,^;195186005;^,or,^;195189003;^,or,^;42341009;^,or,^;432504007;^,or,^;230692004;^,or,^;62914000;^,or,^;195185009;^,or,^;116224001;^,or,^;291571000119106;^,or,^;195155004;^,or,^;195160000;^,or,^;195233001;^,or,^;195235008;^,or,^;195232006;^,or,^;20059004;^,or,^;195234007;^,or,^;230698000;^,or,^;266257000;^,or,^;473459007;^,or,^;230699008;^,or,^;230700009;^,or,^;210038008;^,or,^;223176004;^,or,^;262693007;^,or,^;82999001;^,or,^;127296001;^,or,^;212141007;^,or,^;17769000;^,or,^;36217008;^,or,^;40425004;^,or,^;432776007;^,or,^;230763008;^,or,^;274100004;^,or,^;450410005;^,or,^;262955000;^,or,^;209987007;^,or,^;102891000;^,or,^;362975008;^,or,^;2776000;^,or,^;191519005;^,or,^;80690008;^,or,^;230270009;^,or,^;81308009;^,or,^;238153009;^,or,^;52448006;^,or,^;4
29998004;^,or,^;95640005;^,or,^;4223005;^,or,^;230292008;^,or,^;49049000;^,or,^;19972008;^,or,^;230296006;^,or,^;312991009;^,or,^;242995009;^,or,^;230736007;^,or,^;386806002;^,or,^;32422007;^,or,^;384821006;^,or,^;409083006;^,or,^;129618003;^,or,^;128200000;^,or,^;86489003;^,or,^;15241006;^,or,^;135761000119101;^,or,^;386557006;^
- ^;29164008;^,or,^;25762009;^,or,^;271721006;^,or,^;26929004;^,or,^;79631006;^,or,^;19598007;^,or,^;278510009;^,or,^;407675009;^,or,^;230390002;^,or,^;84757009;^,or,^;241006;^,or,^;6204001;^,or,^;270907008;^,or,^;195230003;^,or,^;195190007;^,or,^;195186005;^,or,^;195189003;^,or,^;42341009;^,or,^;432504007;^,or,^;230692004;^,or,^;62914000;^,or,^;195185009;^,or,^;116224001;^,or,^;291571000119106;^,or,^;195155004;^,or,^;195160000;^,or,^;195233001;^,or,^;195235008;^,or,^;195232006;^,or,^;20059004;^,or,^;195234007;^,or,^;230698000;^,or,^;266257000;^,or,^;473459007;^,or,^;230699008;^,or,^;230700009;^,or,^;210038008;^,or,^;223176004;^,or,^;262693007;^,or,^;82999001;^,or,^;127296001;^,or,^;212141007;^,or,^;17769000;^,or,^;36217008;^,or,^;40425004;^,or,^;432776007;^,or,^;230763008;^,or,^;274100004;^,or,^;450410005;^,or,^;262955000;^,or,^;209987007;^,or,^;102891000;^,or,^;362975008;^,or,^;2776000;^,or,^;191519005;^,or,^;80690008;^,or,^;230270009;^,or,^;81308009;^,or,^;238153009;^,or,^;52448006;^,or,^;4
- All Together
- (,^;43[01456];^,or,^;43[01456][0-9];^,or,^;43[01456][0-9][0-9];^,or,^;433[012389];^,or,^;99702;^,or,^;2904;^,or,^;29410;^,or,^;2941;^,or,^;2941[0-9];^,or,^;310;^,or,^;310[0-9];^,or,^;310[0-9][0-9];^,or,^;331;^,or,^;331[0-9];^,or,^;331[0-9][0-9];^,or,^;345;^,or,^;345[0-9];^,or,^;345[0-9][0-9];^,or,^;36816;^,or,^;7800[13];^,or,^;7846;^,or,^;78469;^,or,^;7845[129];^,or,^;907;^,or,^;907[0-9];^,or,^;907[0-9][0-9];^,or,^;G45[01289]^,or,^;G46^,or,^;G973[12]^,or,^;I6[013456]^,or,^;I678[49]^,or,^;I978[12]^,or,^;S0190XA^,or,^;S02[0123][0129X][0-9X][AB]^,or,^;S02[89][0-9X][0-9X][AB]^,or,^;S0211[GH][AB]^,or,^;S0212[129][DGKS]^,or,^;S024[0-9][0-9A-B][AB]^,or,^;S026[0-9][0-9X][AB]^,or,^;S028[345][129X][DGKS]^,or,^;S06[012]X[1-9][AB]^,or,^;S06[456]X[0-9]A^,or,^;S063[0-9][0-9]A^,or,^;S068[129][0-9]A^,or,^;S069X[0-9]A^,or,^;Z51.89^,or,^;A06A1^,or,^;F01^,or,^;F028[12]^,or,^;F03^,or,^;F05^,or,^;F070^,or,^;F078^,or,^;F482^,or,^;G13^,or,^;G20^,or,^;G21^,or,^;G30^,or,^;G31^,or,^;G318[12459]^,or,^;G40^,or,^;G454^,or,^;G90[A04589]^,or,^;G94^,or,^;G97[45]^,or,^;I67850^,or,^;I68858^,or,^;R40243^,or,^;R403^,or,^;R414^,or,^;R418[49]^,or,^;R470[0-2]^,or,^;R471^,or,^;R478[129]^,or,^;R479^,or,^;R48[1389]^,or,^;S04[0-9][0-9][0-9X]S^,or,^;S060-9][0-9X][0-9]S^,or,^;S06A0^,or,^;29164008;^,or,^;25762009;^,or,^;271721006;^,or,^;26929004;^,or,^;79631006;^,or,^;19598007;^,or,^;278510009;^,or,^;407675009;^,or,^;230390002;^,or,^;84757009;^,or,^;241006;^,or,^;6204001;^,or,^;270907008;^,or,^;195230003;^,or,^;195190007;^,or,^;195186005;^,or,^;195189003;^,or,^;42341009;^,or,^;432504007;^,or,^;230692004;^,or,^;62914000;^,or,^;195185009;^,or,^;116224001;^,or,^;291571000119106;^,or,^;195155004;^,or,^;195160000;^,or,^;195233001;^,or,^;195235008;^,or,^;195232006;^,or,^;20059004;^,or,^;195234007;^,or,^;230698000;^,or,^;266257000;^,or,^;473459007;^,or,^;230699008;^,or,^;230700009;^,or,^;210038008;^,or,^;223176004;^,or,^;262693007;^,or,^;82999001;^,or,^;127296001;^,or,^;212141007;^,or,^;17769000;^,or,^;36217008;^,or,^;40425004;^,or,^;432776007;^,or,^;230763008;^,or,^;274100004;^,or,^;450410005;^,or,^;262955000;^,or,^;209987007;^,or,^;102891000;^,or,^;362975008;^,or,^;2776000;^,or,^;191519005;^,or,^;80690008;^,or,^;230270009;^,or,^;81308009;^,or,^;238153009;^,or,^;52448006;^,or,^;429998004;^,or,^;95640005;^,or,^;4223005;^,or,^;230292008;^,or,^;49049000;^,or,^;19972008;^,or,^;230296006;^,or,^;312991009;^,or,^;242995009;^,or,^;230736007;^,or,^;386806002;^,or,^;32422007;^,or,^;384821006;^,or,^;409083006;^,or,^;129618003;^,or,^;128200000;^,or,^;86489003;^,or,^;15241006;^,or,^;135761000119101;^,or,^;386557006;^,),or,^senile^,or,^alzh[ei][ie]mer^,or,^dementia^,or,(,(,(,^trouble^,or,^hard^,or,^difficult^,or,^impair^,or,^problems^,or,^deficit^,),AND,(,^concentrat^,or,^memor^,or,^cognitive^,or,^cognition^,),),or,^adaptive neurological modifications^,or,^central nervous system disorder^,or,^CNS disorder^,),ANDNOT,(,^;800;^,or,^;800[0-9];^,or,^;800[0-9][0-9];^,or,^;8049;^,or,^;8049[0-9];^,or,^;850;^,or,^;850[0-9];^,or,^;850[0-9][0-9];^,or,^;8541;^,or,^;8541[0-9];^,or,^General weakness^,or,^headache^,or,^fever^,or,^abdominal pain^,or,^minor complaints not otherwise specified^,)