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Hemolytic Uremic Syndrome (HUS) v1

Query purpose: 

Created by the CDC National Syndromic Surveillance Program (NSSP) for use with ED data as part of the rapid reportables project, which seeks to create queries for all National Notifiable Diseases defined by the National Notifiable Diseases Surveillance System (NNDSS). This query is intended to be a version 1 and may be further improved upon by the NSSP community of practice in the future. This query is intended to be narrow and capture visits with specific terms to support greater monitoring and actionable public health data. More complex and/or broader queries may exist that more broadly capture symptoms or travel-based terms.

How it was developed: 

  1. The CDC team used the NNDSS case definition of Hemolytic Uremic Syndrome (HUS) to identify diagnostic codes (International Classification of Diseases, 9th & 10th Revisions (ICD-9-CM, ICD-10-CM), SNOMED Clinical Terms (CT)) and chief complaint free text for syndrome development.
  2. The codes and free text were then categorized as inclusion or exclusion terms. These terms were formatted for querying in ESSENCE.
  3. Text analysis was conducted on the initial query to find additional inclusion or exclusion terms.
  4. The query was cross-checked internally by NSSP and by CDC subject matter experts as needed.

How it works:

The Chief Complaint Discharge Diagnosis (CCDD) parsed field is used to query the discharge diagnosis codes and chief complaint free text.

  • Inclusion based on HUS-related chief complaint free-text terms:
    • The visit is included if it contains:
      1. Chief complaints related to the disease name – (“hemolytic uremic syndrome”, “hus”) OR
  • Inclusion based on ICD-10 discharge diagnosis codes related to HUS:
    • The visit is included if it contains:
      1. A discharge diagnosis code of Hemolytic-uremic syndrome, unspecified (D59.30) OR
      2. A discharge diagnosis code of Infection-associated hemolytic-uremic syndrome (D59.31) OR
      3. A discharge diagnosis code of Other hemolytic-uremic syndrome (D59.39) OR
  • Inclusion based on SNOMED CT discharge diagnosis codes related to HUS:
    • The visit is included if it contains:
      1. A discharge diagnosis code of Hemolytic uremic syndrome (111407006) OR
      2. A discharge diagnosis code of Diarrhea-associated hemolytic uremic syndrome (373421000) OR
      3. A discharge diagnosis code of Atypical hemolytic uremic syndrome (789660001) OR
      4. A discharge diagnosis code of Hemolytic uremic syndrome, adult type (78209002) OR
      5. A discharge diagnosis code of Hemolytic uremic syndrome of childhood (36568005) OR
      6. A discharge diagnosis code of Infection-related hemolytic uremic syndrome (1269270002) AND
  • The above inclusion terms must also include terms related to gastrointestinal (GI) organisms that are typically associated with post-diarrheal HUS:
    • Chief complaint free-text terms related to diarrhea and GI organisms such as E. coli – (“diarrhea”, “e coli”, “ecoli”, “shiga toxin”, “STEC”, “shigella”) OR
    • ICD-10 discharge diagnosis codes related to diarrhea and GI organisms:
      1. A discharge diagnosis code of Diarrhea (R19.7) OR
      2. A discharge diagnosis code of Escherichia coli [E. coli] as the cause of the disease classified elsewhere (B96.2) OR
      3. A discharge diagnosis code of Sepsis due to Escherichia coli [E. coli] (A41.51) OR
      4. A discharge diagnosis code of Contact with and (suspected) exposure to intestinal infectious diseases due to Escherichia coli (E. coli) (Z20.021) OR
      5. A discharge diagnosis code of Shigella due to Shigellosis due to Shigella dysenteriae (A03.0) OR
    • SNOMED discharge diagnosis codes related to diarrhea and GI organisms:
      1. A discharge diagnosis code of Acute diarrhea (409966000) OR
      2. A discharge diagnosis code of Infection caused by Escherichia coli (71057007) OR
      3. A discharge diagnosis code of Intestinal infection caused by Escherichia coli (111839008) OR
      4. A discharge diagnosis code of Infection caused by Shiga toxin producing Escherichia coli (328291000119103) ANDNOT
  • All of the above must exclude:
    • Chief complaint free-text terms related to history of HUS – (“hx of hus”, “history of hus”, “thrombocytopenic purpura”, “TTP”) OR
    • ICD-10 discharge diagnosis codes related to hereditary HUS:
      1. A discharge diagnosis code of Hereditary hemolytic-uremic syndrome (D59.32) OR
    • SNOMED discharge diagnosis codes related to non-acute onset HUS:
      1. A discharge diagnosis code of Diarrhea-negative hemolytic uremic syndrome (373422007) OR
      2. A discharge diagnosis code of Familial hemolytic uremic syndrome (722721004) OR
      3. A discharge diagnosis code of Congenital hemolytic uremic syndrome (444976001) OR
      4. A discharge diagnosis code of Hemolytic uremic syndrome with diacylglycerol kinase epsilon deficiency (1269225005) OR
      5. A discharge diagnosis code of Atypical hemolytic uremic syndrome with complement gene abnormality (1293264009) OR
      6. A discharge diagnosis code of Upshaw-Schulman syndrome (373420004)
Syndrome Definition

(,(,^hemolytic uremic syndrome^,or,!hus!,or,^;D593[019]^,or,^;111407006;^,or,^;373421000;^,or,^;789660001;^,or,^;78209002;^,or,^;36568005;^,or,^;1269270002;^,),and,(,^diarrhea^,or,^;R197^,or,^;409966000;^,or,^e coli^,or,^ecoli^,or,^;B962^,or,^;A4151^,or,^;Z20021^,or,^;71057007;^,or,^;111839008;^,or,^shiga toxin^,or,!STEC!,or,^;328291000119103;^,or,^shigella dysent^,or,^s dysent^,or,^;A030^,),),andnot,(,^hx of hus^,or,^history of hus^,or,^thrombocytopenic purpura^,or,^TTP,or,^;D5932^,or,^;373422007;^,or,^;722721004;^,or,^;444976001;^,or,^;1269225005;^,or,^;1293264009;^,or,^;373420004;^,)

Submitting Author Email
nssp@cdc.gov
Referenced File
Submitted by rtugan on