Query purpose:
The Intellectual and Developmental 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 Disability (v1) – Disability Overall 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 intellectual and developmental disability domain. If only ICD-10 was available in a definition, we used the prior version for ICD-9:
- Autism Spectrum Disorders
- Cerebral Palsy
- Intellectual Disabilities and Related Conditions
- Other Developmental Delays
- ADHD, Conduct Disorders, and Hyperkinetic Syndrome
Using this initial set of codes, we abstracted relevant ICD-10 codes following inclusion criteria. Additional codes were collected from an ongoing project at the Massachusetts Department of Health, Office of Health Equity, a CDC project for identifying adults with intellectual and developmental disabilities, and three research papers by McDermott et al. (2018), Phillips et al. (2018), and Larson et al. (2001).
The scientific panel had many discussions about separating the intellectual and developmental disability domain into two. The group was split on whether this domain should be separated into one domain for intellectual disabilities and another for developmental disabilities or remain together. Ultimately, the definition team decided not to split these domains to best align with current categorization of these disabilities. Additionally, separating this domain would require extensive conversations with healthcare providers, disability experts, and people with lived experience and have broad implications beyond NSSP. This process would be lengthy and require further programming that the definition team did not have at this time.
Following state and local pilot testing, we excluded additional terms and excluded specific ICD-10 codes that were leading to false positive results. We examined the list of codes in the Intellectual and Developmental Disability and Specific Developmental Behavioral and Learning
Plain language syntax Description:
The Intellectual and Developmental Disability (v1) definition intends to identify emergency department visits by people with intellectual and developmental disabilities. The definition includes diagnosis codes and words related to intellectual and developmental disabilities. Users can combine the Intellectual and Developmental Disabilities definition with other definitions used to track important public health outcomes (e.g., heat-related illness, suicide attempts, or infection) to find out if emergency department visits for these important outcomes are more common among people with intellectual and developmental disabilities compared to people without intellectual and developmental disabilities. This definition will not capture everyone with intellectual and developmental disabilities, but it can be used to look at trends and help public health professionals better understand the impact of health concerns on the disability community. This information can be used to help make sure the needs of people with disabilities are considered and addressed when responding to health concerns.
For consideration:
This definition has some limitations, including some false positives that remain (though infrequently). This definition is also limited in that it was only tested by one jurisdiction; however, the definition performed well (i.e., high PPV) at the national level. While we ultimately decided to combine intellectual disability (ID) and developmental disability (DD) into a single domain, data users should be aware that while individuals with ID are considered to have a DD, those with DD may not have ID.
Diagnostic codes associated with Intellectual and Developmental Disability and Specific Developmental, Behavioral, and Learning Disability domains may be applied differently for children and adults; therefore, data users should be aware that certain codes may be more or less frequently used depending on age. Examples are developmental disorders that are more commonly diagnosed in school-aged children, such as learning disabilities (dyslexia, dyscalculia, dysgraphia, etc.), attention-deficit/hyperactivity disorder (ADHD), and behavioral disorders such as conduct disorder. Intellectual disability may also not be clinically recognized, particularly among adults, depending on the severity or underlying cause (see Patel et al., 2020).
Additionally, there are at least five limitations common to the Overall Disability (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.
Intellectual and Developmental Disability
- ICD9
- ^;270;^,or,^;270[0-9];^,or,^;271;^,or,^;271[0-9];^,or,^;2701;^,or,^;2701[0-9];^,or,^;2727;^,or,^;2727[0-9];^,or,^;2772;^,or,^;2772[0-9];^,or,^;299;^,or,^;299[0-9];^,or,^;299[0-9][0-9];^,or,^;31[789];^,or,^;31[789][0-9];^,or,^;31[789][0-9][0-9];^,or,^;315[4589];^,or,^;330;^,or,^;330[0-9];^,or,^;33371;^,or,^;343;^,or,^;343[0-9];^,or,^;343[0-9][0-9];^,or,^;520;^,or,^;520[0-9];^,or,^;520[0-9][0-9];^,or,^;7548;^,or,^;7548[0-9];^,or,^;7551;^,or,^;7551[0-9];^,or,^;758;^,or,^;758[01235];^,or,^;758[01235][0-9]^,or,^;7583[1-9];^,or,^;759[57];^,or,^759[57][0-9];^,or,^;7598[139];^,or,^;7607[17];^
- ICD10
- ^;E03[01]^,or,^;E70^,or,^;E70[01234589]^,or,^;E70[2348][0-9]^,or,^;E70[3][0-9][0-9]^,or,^;E71^,or,^;E71[012345]^,or,^;E71[1345][0-9]^,or,^;E71[345][0-9][0-9]^,or,^;E72^,or,^;E72[0123459]^,or,^;E72[01258][0-9]^,or,^;E74^,or,^;E74[012348]^,or,^;E74[01238][0-9]^,or,^;E748[0-9][0-9]^,or,^;E75^,or,^;E75[0123456]^,or,^;E75[012][0-9]^,or,^;E752[0-9][0-9]^,or,^;E76^,or,^;E76[012389]^,or,^;E76[02][0-9]^,or,^;E762[0-9][0-9]^,or,^;E77^,or,^;E77[0-9]^,or,^;E787[12]^,or,^;E791^,or,^;F7[0-9]^,or,^;F7[0-9][0-9]^,or,^;F78A^,or,^;F78A[19]^,or,^;F8[489]^,or,^;F84[0-9]^,or,^;G3181^,or,^;G80[0-9]^,or,^;M952^,or,^;P043^,or,^;Q04[0-9]^,or,^;Q67[678]^,or,^;Q68[01]^,or,^;Q70[49]^,or,^;Q70[0123][0123]^,or,^;Q743^,or,^;Q767^,or,^;Q851^,or,^;Q86[01]^,or,^;Q87[1235]^,or,^;Q871[19]^,or,^;Q878[129]^,or,^;Q89[78]^,or,^;Q90[0129]^,or,^;Q91[0-7]^,or,^;Q92[0125789]^,or,^;Q926[12]^,or,^;Q93[0123479]^,or,^;Q935[19]^,or,^;Q938[189]^,or,^;Q95[23]^,or,^;Q992^,or,^;R4183^
- SNOMED
- ^;1855002;^,or,^;7199000;^,or,^;7573000;^,or,^;8447006;^,or,^;10406007;^,or,^;16652001;^,or,^;17122004;^,or,^;17760001;^,or,^;20415001;^,or,^;23560001;^,or,^;31216003;^,or,^;34111000;^,or,^;35919005;^,or,^;40700009;^,or,^;40930008;^,or,^;42012007;^,or,^;43929004;^,or,^;48637007;^,or,^;57148006;^,or,^;58193001;^,or,^;58459009;^,or,^;59033006;^,or,^;61152003;^,or,^;66091009;^,or,^;68528007;^,or,^;68618008;^,or,^;70156005;^,or,^;70173007;^,or,^;71961003;^,or,^;74345006;^,or,^;75019001;^,or,^;75511006;^,or,^;76880004;^,or,^;77287004;^,or,^;82354003;^,or,^;86765009;^,or,^;110359009;^,or,^;111246005;^,or,^;111270009;^,or,^;128188000;^,or,^;190794006;^,or,^;192562009;^,or,^;192782005;^,or,^;205615000;^,or,^;205616004;^,or,^;205619006;^,or,^;205620000;^,or,^;205623003;^,or,^;205624009;^,or,^;205627002;^,or,^;205636003;^,or,^;205660004;^,or,^;205666005;^,or,^;205673000;^,or,^;205674006;^,or,^;205720009;^,or,^;205788004;^,or,^;205791004;^,or,^;205808005;^,or,^;205812004;^,or,^;238028008;^,or,^;254041007;^,or,^;254264002;^,or,^;254266000;^,or,^;254268004;^,or,^;254269007;^,or,^;25427000
8;^,or,^;254272000;^,or,^;254274004;^,or,^;267431006;^,or,^;268674003;^,or,^;270520003;^,or,^;270521004;^,or,^;274908005;^,or,^;276654001;^,or,^;278512001;^,or,^;297231002;^,or,^;373413006;^,or,^;391987005;^,or,^;396338004;^,or,^;400038003;^,or,^;408856003;^,or,^;409709004;^,or,^;444655009;^,or,^;471282000;^,or,^;767263007;^,or,^;770414008;^,or,^;1010276004;^,or,^;367041000119108;^,or,^;813921000000104;^
- ^;1855002;^,or,^;7199000;^,or,^;7573000;^,or,^;8447006;^,or,^;10406007;^,or,^;16652001;^,or,^;17122004;^,or,^;17760001;^,or,^;20415001;^,or,^;23560001;^,or,^;31216003;^,or,^;34111000;^,or,^;35919005;^,or,^;40700009;^,or,^;40930008;^,or,^;42012007;^,or,^;43929004;^,or,^;48637007;^,or,^;57148006;^,or,^;58193001;^,or,^;58459009;^,or,^;59033006;^,or,^;61152003;^,or,^;66091009;^,or,^;68528007;^,or,^;68618008;^,or,^;70156005;^,or,^;70173007;^,or,^;71961003;^,or,^;74345006;^,or,^;75019001;^,or,^;75511006;^,or,^;76880004;^,or,^;77287004;^,or,^;82354003;^,or,^;86765009;^,or,^;110359009;^,or,^;111246005;^,or,^;111270009;^,or,^;128188000;^,or,^;190794006;^,or,^;192562009;^,or,^;192782005;^,or,^;205615000;^,or,^;205616004;^,or,^;205619006;^,or,^;205620000;^,or,^;205623003;^,or,^;205624009;^,or,^;205627002;^,or,^;205636003;^,or,^;205660004;^,or,^;205666005;^,or,^;205673000;^,or,^;205674006;^,or,^;205720009;^,or,^;205788004;^,or,^;205791004;^,or,^;205808005;^,or,^;205812004;^,or,^;238028008;^,or,^;254041007;^,or,^;254264002;^,or,^;254266000;^,or,^;254268004;^,or,^;254269007;^,or,^;25427000
- All together
- ^;270;^,or,^;270[0-9];^,or,^;271;^,or,^;271[0-9];^,or,^;2701;^,or,^;2701[0-9];^,or,^;2727;^,or,^;2727[0-9];^,or,^;2772;^,or,^;2772[0-9];^,or,^;299;^,or,^;299[0-9];^,or,^;299[0-9][0-9];^,or,^;31[789];^,or,^;31[789][0-9];^,or,^;31[789][0-9][0-9];^,or,^;315[4589];^,or,^;330;^,or,^;330[0-9];^,or,^;33371;^,or,^;343;^,or,^;343[0-9];^,or,^;343[0-9][0-9];^,or,^;520;^,or,^;520[0-9];^,or,^;520[0-9][0-9];^,or,^;7548;^,or,^;7548[0-9];^,or,^;7551;^,or,^;7551[0-9];^,or,^;758;^,or,^;758[01235];^,or,^;758[01235][0-9]^,or,^;7583[1-9];^,or,^;759[57];^,or,^759[57][0-9];^,or,^;7598[139];^,or,^;7607[17];^,or,^;E03[01]^,or,^;E70^,or,^;E70[01234589]^,or,^;E70[2348][0-9]^,or,^;E70[3][0-9][0-9]^,or,^;E71^,or,^;E71[012345]^,or,^;E71[1345][0-9]^,or,^;E71[345][0-9][0-9]^,or,^;E72^,or,^;E72[0123459]^,or,^;E72[01258][0-9]^,or,^;E74^,or,^;E74[012348]^,or,^;E74[01238][0-9]^,or,^;E748[0-9][0-9]^,or,^;E75^,or,^;E75[0123456]^,or,^;E75[012][0-9]^,or,^;E752[0-9][0-9]^,or,^;E76^,or,^;E76[012389]^,or,^;E76[02][0-9]^,or,^;E762[0-9][0-9]^,or,^;E77^,or,^;E77[0-9]^,or,^;E787[12]^,or,^;E791^,or,^;F7[0-9]^,or,^;F7[0-9][0-9]^,or,^;F78A^,or,^;F78A[19]^,or,^;F8[489]^,or,^;F84[0-9]^,or,^;G3181^,or,^;G80[0-9]^,or,^;M952^,or,^;P043^,or,^;Q04[0-9]^,or,^;Q67[678]^,or,^;Q68[01]^,or,^;Q70[49]^,or,^;Q70[0123][0123]^,or,^;Q743^,or,^;Q767^,or,^;Q851^,or,^;Q86[01]^,or,^;Q87[1235]^,or,^;Q871[19]^,or,^;Q878[129]^,or,^;Q89[78]^,or,^;Q90[0129]^,or,^;Q91[0-7]^,or,^;Q92[0125789]^,or,^;Q926[12]^,or,^;Q93[0123479]^,or,^;Q935[19]^,or,^;Q938[189]^,or,^;Q95[23]^,or,^;Q992^,or,^;R4183^,or,^;1855002;^,or,^;7199000;^,or,^;7573000;^,or,^;8447006;^,or,^;10406007;^,or,^;16652001;^,or,^;17122004;^,or,^;17760001;^,or,^;20415001;^,or,^;23560001;^,or,^;31216003;^,or,^;34111000;^,or,^;35919005;^,or,^;40700009;^,or,^;40930008;^,or,^;42012007;^,or,^;43929004;^,or,^;48637007;^,or,^;57148006;^,or,^;58193001;^,or,^;58459009;^,or,^;59033006;^,or,^;61152003;^,or,^;66091009;^,or,^;68528007;^,or,^;68618008;^,or,^;70156005;^,or,^;70173007;^,or,^;71961003;^,or,^;74345006;^,or,^;75019001;^,or,^;75511006;^,or,^;76880004;^,or,^;77287004;^,or,^;82354003;^,or,^;86765009;^,or,^;110359009;^,or,^;111246005;^,or,^;111270009;^,or,^;128188000;^,or,^;190794006;^,or,^;192562009;^,or,^;192782005;^,or,^;205615000;^,or,^;205616004;^,or,^;205619006;^,or,^;205620000;^,or,^;205623003;^,or,^;205624009;^,or,^;205627002;^,or,^;205636003;^,or,^;205660004;^,or,^;205666005;^,or,^;205673000;^,or,^;205674006;^,or,^;205720009;^,or,^;205788004;^,or,^;205791004;^,or,^;205808005;^,or,^;205812004;^,or,^;238028008;^,or,^;254041007;^,or,^;254264002;^,or,^;254266000;^,or,^;254268004;^,or,^;254269007;^,or,^;254270008;^,or,^;254272000;^,or,^;254274004;^,or,^;267431006;^,or,^;268674003;^,or,^;270520003;^,or,^;270521004;^,or,^;274908005;^,or,^;276654001;^,or,^;278512001;^,or,^;297231002;^,or,^;373413006;^,or,^;391987005;^,or,^;396338004;^,or,^;400038003;^,or,^;408856003;^,or,^;409709004;^,or,^;444655009;^,or,^;471282000;^,or,^;767263007;^,or,^;770414008;^,or,^;1010276004;^,or,^;367041000119108;^,or,^;813921000000104;^,or,(,(,^development^,or,^intellectual^,),AND,(,^delay^,or,^disorder^,or,^disability^,),),or,(,(,^down^,),AND,(,^syndrome^,),),or,^cerebral palsy^,or,^autism^,or,^adaptive neurological modifications^