Components of HIV/AIDS Case Surveillance: Case Report Forms and Sources.
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Transcript of Components of HIV/AIDS Case Surveillance: Case Report Forms and Sources.
Components of HIV/AIDS Case Surveillance: Case Report Forms and
Sources
Developing a Case Report Form In developing a Case Report Form, One Must: Select the WHO surveillance case definition to be used in the country
Determine the clinical events to be captured
Select the unique identifier or set of identifiers
WHO Case Definition: HIV Infection HIV infection surveillance includes reports of all persons with HIV infection, regardless of clinical stage
Persons should be reported if they: Are newly diagnosed regardless of clinical stage Were previously diagnosed but not previously reported
Were previously diagnosed and reported at clinical stage 1 or 2 and progressed to stage 3 or 4
The report should include the clinical stage at diagnosis
HIV Case Reporting Data Outputs The distribution of patient demographic and risk characteristics
Capture the spectrum of key events in course of HIV disease
Monitor levels of and trends in: Diagnosis of HIV (infection or advanced infection)
Clinical stage at time of diagnosis Use of ART and prophylaxis HIV- and non-HIV-related deaths Development and types of opportunistic illness
Time between most recent negative HIV test and diagnosis
Function of the HIV Case Report Form The case report form is used to standardise the collection of information that is obtained on all reported HIV cases
An HIV case report form is designed to:
Collect information that promotes understanding of HIV infection, morbidity, and mortality
Facilitate reporting an HIV case
Standardise the collection of variables
HIV Case Report Form Links Surveillance Inputs to Outputs
Developing the Case Report Form A case report form should be designed with the following in mind: The feasibility of completing the form The need for reporting to be complete The current and future needs of case reporting data
Maintaining the integrity of the reporting system
The acceptability of the form to persons responsible for submitting reports
The overall simplicity of the form
Factors to Consider in Designing the Case Report Form Availability of data Consistency of data collected from the reporting sources
Validity of data Sources of reports Persons completing the form Minimizing burden to staff completing the form
Ensuring Quality Data Case report forms must be completed correctly and in a timely fashion
Persons reporting cases must: Have forms readily available Know how to complete the form
Have instructions included with the form Include information on who to call with questions and where form should be submitted
Elements of a Case Report Form A comprehensive case report form contains: Reporting source information
Individual reporting the case Facility from which case is reported Date of report
Elements of a Case Report Formcontinued
Patient information Personal identifier (e.g. name) Date of diagnosis Demographic and risk characteristics Vital status HIV testing HIV clinical stage and immunologic status at diagnosis and progression from stages 1 or 2 to advanced HIV infection
Treatment and care
Patient Identifier, Demographic, and Vital Status Information
C: PATIENT INFORMATION Patient’s first name:
Patient’s maiden name (if applicable):
Patient’s last name:
Patient’s coded unique identifier (if applicable):
Day Mo. Year
Actual Date of birth: / / Or Estimated DOB: / /
Sex: MALE FEMALE
Current city/town of residence:
Current country of residence:
Country of birth:
Nationality:
Education completed: NO FORMAL SCHOOLING PRIMARY SECONDARY TECHNICAL/VOCATIONAL UNIVERSITY AND HIGHER
Occupation Status: EMPLOYED UNEMPLOYED
Race/Ethnicity:
Is this patient currently pregnant (females only): YES NO UNKNOWN Current Status:
ALIVE DEAD UNKNOWN Day Mo. Year
Date of death: / / Cause of death: HIV-RELATED OTHER/UNKNOWN
HIV Risk Character Information
D: RISK FACTORS/EXPOSURES Preceding the first positive HIV test, this patient had (respond to all categories): YES NO UNKNOWN
Had sex with male(s) in the past 12 months
Had sex with female(s) in the past 12 months
Had sex with person(s) of known HIV-positive status in the past 12 months
Had sex with sex worker(s) in the past 12 months
Exchanged sex for money, drugs or material gain in the past 12 months
Injected nonprescription drugs in the past 12 months
Used non-injected illicit drug (e.g. crack, cocaine, marijuana, hallucinogenics, etc) in the past 12 months
Any history of incarceration in prison in the last five years
Perinatal exposure to HIV
Received transfusion(s) of blood, blood products or clotting factors
Received a transplant of tissue or organ or artificial insemination
Occupational exposure while working in a health care setting or laboratory or providing safety or emergency services
HIV Clinical Stage, Immunologic Information, and HIV Testing History
Identifying Reporting Sources
LOCATION WHERE WHAT DATA VCT Site • VCT
Counseling and Testing Form
• Administrative information• Demographic information• Behavioural risk factors• Diagnosis information
Hospitals/Health Care Clinics
• Client medical record
• Administrative information
• Demographic information• Diagnosis information• Behavioral risk factors
• Clinical stage • Opportunistic illnesses• Immunologic status• Care and treatment• Vital status
PMTCT/ANC Clinics
• ANC register
• PMTCT register
• Client medical record
• Administrative information
• Demographic information• Diagnosis information• Vital status
ART Clinics • Client medical record
• Administrative information
• Demographic information• Diagnosis information• Behavioral risk factors
• Clinical stage • Opportunistic illnesses• Immunologic status• Care and treatment• Vital status
Identifying Reporting SourcesLOCATION WHERE WHAT DATA Laboratories • Laboratory Test
Request Forms • Laboratory
Result Forms • Laboratory
Registers
• Administrative information
• Demographic information
• Diagnosis information
• Clinical stage • Immunologic status
TB Clinics • Client Medical Record
• Administrative information
• Demographic information
• Diagnosis information
• Vital status
Vital Statistics Registries
• Vital statistic registry/database
• Vital status • Cause of Death
Mobile/Outreach
• Counseling and Testing Forms
• Outreach data collection forms
• Administrative information
• Demographic information
• Behavioural risk factors
• Diagnosis information
Private Doctors
• Client Medical Record
• Administrative information
• Demographic information
• Diagnosis information
• Clinical stage • Immunologic status• Care and treatment• Vital status
Multiple Data Sources, One Case
HIV CASE REPORTING DATABASE
VCT CENTRE(name, sex, dob,
behavioral, residence, date of dx, facility of dx)
LABORATORY(name, sex, dob, date of dx, VL and CD4 near
or at dx)
HOSPTIAL/ART CLINIC
(name, sex, dob, residence, date of dx, facility of
dx, art start date, prophylaxis, clinical staging, behavioural, vital status, VL, CD4)
VITAL STATISTICS REGISTRY
(name, sex, dob, residence, date of death, cause
of death)
PMTCT CLINIC (name, sex, dob,
residence, date of dx, facility of dx, art
start date, prophylaxis, clinical staging, vital
status, VL, CD4)
PRIVATE PHYSICIANS (name, sex, dob, residence, date of dx, facility of dx,
art start date, prophylaxis, clinical staging, behavioural vital status, VL,
CD4)
The Need for a Unique Case Identifier HIV case-based reporting is unique among infectious disease surveillance systems because: A person can acquire HIV only once A person is diagnosed and reported with advanced HIV infection only once
Even if clinical status improves, cases should be reported only at: Initial diagnosis of stage 1 or 2 infection Initial diagnosis of stage 3 or 4 infection
The Need for a Unique Case Identifier, continued In order to accurately measure the level of and trends in disease burden surveillance programmes must identify duplicate cases and retain the report with the earliest date of diagnosis
A longitudinal surveillance database requires Following reported cases over time Identifying progression from stages 1 and 2 to advanced HIV infection
Updating a patient record when additional data are obtained
Selecting A Case Identifier The case identifier must:
Be unique to the individual Not change over time or allow time of change to be known
Be easy to identify from a clinical record Be something that is or is derived from routinely collected data
The case identifier must be able to: Distinguish duplicate reports for the same person Distinguish cases with the identifier who are different persons
Allow follow-up information from the surveillance programme and healthcare provider to be easily connected with existing information
Selecting A Case Identifier, continued The identifier must:
Be available without interviewing the patient
Allow evaluation of the surveillance system: Permit assessing the completeness and timeliness of reporting
Permit assessing validity of data on case report forms
Be evaluated
Mandatory Variables for Counting Cases Only cases that meet the WHO HIV infection or advanced HIV infection surveillance case definitions should be reported
Required on the case report form for the surveillance programme to count a case are: Case identifier (name or code) Sex Date of birth Earliest date of diagnosis Clinical stage and/or CD4 test result Date of death (if applicable)
Summary HIV infection reporting:
Provides data on number and characteristics of persons with HIV and advanced HIV
Is used to determine current and future needs for ART and prevention programmes and to assess their impact
Countries should begin HIV reporting by: Identifying reporting sites, staff and resources Adopting the surveillance case definition Determining who will be responsible for case reporting
Determine desired outputs Develop a case report form with these factors taken into consideration
Thank You
Working Together to Plan, Implement, and Use
HIV Surveillance Systems