Query purpose:
The Self-Care and Independent Living 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.
The Self-Care and Independent Living domain was developed following the second scientific panel and using keywords found in the ADA for limitations to instrumental activities of daily living. This domain ensures the definition casts a wide net to describe all the ways disability can impact a person’s daily living activities. The Self-Care and Independent Living domain captures a subset of visits with coding for disabilities not captured elsewhere that impact a person’s daily living activities. This domain is Z-code based, which includes codes for environmental, social, and disorder agnostic symptoms a patient may display during a visit. The code list includes limitations of activities due to disability, need for assistance for personal care or for continuous supervision, and problems related to independent living or daily living. Keywords regarding Self-Care and Independent Living from the ADA and associated amendments, as well as the Washington Group Short Set descriptions include limitation of activities, activity impairment, life management difficulty, self-care assistance, difficulty caring for oneself, among others. While this domain is shorter than the other domains, it provides a critical and important piece of describing disability that is not traditionally captured in diagnostic code-based definitions.
Plain language syntax Description:
The Self-Care and Independent Living Disability (v1) definition intends to identify emergency department visits by people with disabilities related to self-care or independent living. The definition includes diagnosis codes and words related to functional difficulty related to self-care (such as dressing or bathing) and independent living (such as doing errands alone or visiting a doctor’s office). Users can combine the Self-Care and Independent Living Disability (v1) 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 disabilities related to self-care or independent living compared to people without disabilities related to self-care or independent living. This definition will not capture everyone with a disability related to self-care or independent living, 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).
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. Self-Care and Independent Living
- ICD9
- N/A
- ICD10
- ^;R460^,or,^;Z593^,or,^;Z602^,or,^;Z73[68]^,or,^;Z74[123]^,or,^;Z7409^,or,^;Z710^
- SNOMED
- ^;413298002;^,or,^;288521000119101;^,or,^;15936341000119100;^,or,^;15936341000119106;^,or,^;105507009;^,or,^;410428008;^,or,^;271437004;^,or,^;15929301000119104;^,or,^;160685001;^,or,^;281694009;^
- All Together
- ^;R460^,or,^;Z593^,or,^;Z602^,or,^;Z73[68]^,or,^;Z74[123]^,or,^;Z7409^,or,^;Z710^,or,^;413298002;^,or,^;288521000119101;^,or,^;15936341000119100;^,or,^;15936341000119106;^,or,^;105507009;^,or,^;410428008;^,or,^;271437004;^,or,^;15929301000119104;^,or,^;160685001;^,or,^;281694009;^,or,(,(,(,^trouble^,or,^hard^,or,^difficulty^,or,^impair^,or,^problems^,or,^deficit^,or,^unable^,or,^failure^,or,^concern^,or,^poor^,),AND,(,^looking after self^,or,^managing medications^,or,^managing meds^,or,^dressing^,or,^caring for body parts^,or,^bathing^,or,^doing housework^,or,^preparing meals^,or,^self care^,or,^selfcare^,or,^taking care^,or,^domestic life activities^,or,^washing^,or,^assisting others^,or,^caring for household^,or,^toileting^,or,^performing manual tasks^,or,^performing tasks^,or,^life management^,or,^living alone^,or,^residential institution^,or,^getting around inside home^,or,!ADL!,or,^housework^,),),or,(,(,^need^,or,^require^,or,^depend^,),AND,(,^assistance^,or,^supervision^,or,^caregiver^,or,^caretaker^,or,^on others^,or,^attendant^,or,!PCA!,or,^guardian^,),),or,(,(,^with^,or,^has^,or,^presents with^,or,^presents to ED with,),AND,(,caretaker^,or,^guardian^,or,!PCA!,),),or,^guardianship^,or,^activity impairment^,or,^limitation of activities^,),ANDNOT,(,^trouble breathing^,or,^difficulty breathing^,or,^without difficulty^,or,^denies difficulty^,or,^Spanish assistance req^,)