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Case Definitions for Non-Notifiable Infections Caused by Free-Living Amebae (Naegleria Fowleri, Balamuthia Mandrillaris, and Acanthamoeba Spp.)

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Case Definitions for Non-Notifiable Infections Caused by Free-Living Amebae (Naegleria Fowleri, Balamuthia Mandrillaris, and Acanthamoeba Spp.) 11-ID-15 Committee: Infectious Disease Title: Case Definitions for Non-notifiable Infections Caused by Free-living Amebae (Naegleria fowleri, Balamuthia mandrillaris, and Acanthamoeba spp.) I. Statement of the Problem Free-living amebae infections can cause corneal keratitis, blindness or severe, neurologic illnesses that commonly result in death. Although these infections are rare and not currently nationally notifiable, creating standardized case definitions would facilitate more systematic collection of clinical, epidemiologic, and laboratory data to assist in understanding the risk factors for infection with free-living amebae and increase the potential for development of future prevention recommendations. II. Background and Justification Infections caused by free-living amebae (Naegleria fowleri, Balamuthia mandrillaris, and Acanthamoeba [keratitis and non-keratitis infections]) have been well documented worldwide. These amebae can cause fatal or severe skin, eye, and neurologic infections (e.g., N. fowleri causes primary amebic meningoencephalitis [PAM]; B. mandrillaris and several species of Acanthamoeba cause granulomatous amebic encephalitis [GAE]; and Acanthamoeba can also cause keratitis). Annually, during 2005–2008, 3–6 fatal N. fowleri infections occurred underscoring that although these infections are rare, the outcomes are often severe and can undermine the public’s confidence in certain public recreational activities (e.g., swimming in fresh water lakes). A recent case in a Northern tier state (with no history of recent travel) indicates these organisms might be more geographically widespread than previously thought. Clusters of cases associated with organ transplantation occurred in 2009 and 2010, indicating the potential for multiple persons being affected by one source case. Currently, no standardized case definitions exist to facilitate collection of uniform clinical, epidemiologic, and laboratory data, or to serve as a guide for state and local health agencies to use in characterizing such severe illnesses. III. Statement of the desired action(s) to be taken 1. Establish standard reporting and case classification for non-notifiable diseases caused by N. fowleri, B. mandrillaris, and Acanthamoeba spp. (including keratitis) and recommend that any State or Territory conducting surveillance for these conditions using standard reporting and case classification. 2. CSTE recommends that State and Territories conducting surveillance according to these methods consider reporting case information to CDC. 3. CSTE recommends that CDC publish data on disease caused by N. fowleri, B. mandrillaris, and Acanthamoeba spp. (including keratitis) as appropriate. Page 1 of 10 In addition, CSTE calls upon CDC to 1) work with the American Medical Association and other partners to expand physician education regarding the diagnosis and treatment of PAM, GAE, Acanthamoeba keratitis, and other free-living amebic infections, and 2) increase public education about PAM, GAE, Acanthamoeba keratitis, and other free-living amebic syndromes to promote prevention and early recognition. IV. Goals of Surveillance Although free-living amebae infections are non-notifiable diseases, the purpose of this statement is to provide standardized case definitions to facilitate better understanding of these diseases and identify potential prevention measures. The goals of surveillance for free-living amebae infections are to monitor the geographic distribution and temporal trends in disease, and to collect standardized epidemiologic and clinical data to better characterize the illnesses to inform prevention measures. V. Methods for Surveillance: Surveillance for free-living amebae infections should use the following recommended sources of data and the extent of coverage listed in Table V. Table V. Recommended sources of data for case identification and extent of coverage for ascertaining cases of free-living amebae infections. Coverage Source of data for case identification Population-wide Sentinel sites Clinician reporting X Laboratory reporting X Reporting by other entities (e.g., hospitals, X veterinarians, pharmacies) Death certificates X Hospital discharge or outpatient records X Extracts from electronic medical records Telephone survey School-based survey Other: media accounts X VI. Criteria for case identification A. Narrative: A description of suggested criteria that may be for case ascertainment of a specific condition. Voluntary reporting of all illness to public health authorities that meets any of the following criteria: Page 2 of 10 1. Any person with clinical signs and/or symptoms consistent with primary amebic meningoencephalitis, granulomatous amebic encephalitis, or corneal keratitis who has a positive laboratory test for N. fowleri, Acanthamoeba spp., or Balamuthia spp. These tests may include any of the following: a. Isolation of free-living amebae in culture from a clinical specimen b. Detection of free-living amebae antigen or nucleic acid from a clinical specimen 2. Any person whose healthcare record or death certificate contains a diagnosis of primary amebic meningoencephalitis, granulomatous amebic encephalitis, or Acanthamoeba keratitis 3. Any person with ocular or neurologic manifestations consistent with free-living amebae infection after having receiving an organ or transplanted tissue from a person confirmed or suspected to have a free-living amebae infection Table VI-B. Table of criteria to determine whether a case should be reported to public health authorities. Criterion Reporting Clinical Evidence Primary amebic meningoencephalitis O Granulomatous amebic encephalitis O Acanthamoeba corneal keratitis O A person whose healthcare record contains a diagnosis of S primary amebic meningoencephalitis, granulomatous amebic encephalitis, or Acanthamoeba keratitis A person whose death certificate contains a diagnosis of S primary amebic meningoencephalitis, granulomatous amebic encephalitis, or Acanthamoeba keratitis Laboratory Evidence Isolation of N. fowleri, Acanthamoeba spp., or Balamuthia O spp. in culture from clinical specimen Detection of N. fowleri, Acanthamoeba spp., or Balamuthia O spp. antigen or nucleic acid from clinical specimen Epidemiological Evidence Any person with ocular or neurologic manifestations S consistent with free-living amebae infection after having receiving an organ or transplanted tissue from a person confirmed or suspected to have a free-living amebae infection Notes: S = This criterion alone is Sufficient to report a case. N = All “N” criteria in the same column are Necessary to report a case. O = At least one of these “O” (Optional) criteria in each category (e.g., clinical evidence and laboratory evidence) in the same column—in conjunction with all “N” criteria in the same column—is required to report a case. Page 3 of 10 C. Disease-specific data elements Disease-specific data elements to be included in the initial report are listed below. Basic demographics (e.g. age, sex, race, ethnicity, state of residence) Clinical Information Date of onset Reported symptoms of illness Recorded diagnoses Hospitalization Outcome Concurrent or pre-existing conditions (to include any recent trauma or immunosuppressing conditions) Medication and treatment Results of biopsies and cerebrospinal fluid studies (if applicable) Epidemiological Risk Factors Recreational or occupational water exposure in past 10 days (including type of water venue, location, and date[s] of exposure) Description of water-related activities (e.g., head submersion, diving, rough horseplay, water skiing, use of water slides, swings or other equipment at recreational water venue) or other outdoor activities (e.g., landscaping, gardening) Environmental conditions during period of water exposure if available (e.g., ambient air temperature, water temperature, water turbidity, presence of aquatic vegetation at recreational water venue, source of water) Travel in past 10 days Contact lens use (for corneal keratitis) Recent ill contacts Illness among coparticipants at recreational water venue Drinking untreated water Receipt of organs or tissues from persons having confirmed or suspected free-living amebae infection Laboratory Information Method(s) of laboratory testing (culture, PCR, antigen) Type of antigen testing Molecular characterization of organism (if available) VII. Case Definition for Case Classification A. Narrative: Description of criteria to determine how a case should be classified. Page 4 of 10 1) Naegleria fowleri Causing Primary Amebic Meningoencephalitis (PAM) Clinical description N. fowleri is a free-living ameboflagellate that invades the brain and meninges via the nasal mucosa and olfactory nerve to cause acute, fulminant hemorrhagic meningoencephalitis (primary amebic meningoencephalitis – PAM), primarily in healthy children and young adults with a recent history of exposure to warm fresh water. Initial signs and symptoms of PAM begin 1 to 14 days after infection and include sudden onset of headache, fever, nausea, vomiting, and stiff neck accompanied by positive Kernig’s and Brudzinski’s signs. In some cases, abnormalities in taste or smell, nasal obstruction and nasal discharge might be seen. Other symptoms might include photophobia, mental-state abnormalities, lethargy, dizziness, loss of balance, other visual disturbances, hallucinations, delirium, seizures, and coma. After the onset of symptoms, the disease progresses rapidly and usually results in death within 3 to 7 days. Although a variety
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