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Introduction to HIV Case Surveillance



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Introduction to HIV Case Surveillance

What you


will learn

By the end of this unit, you should be able to:



  • describe the stages in the natural history of HIV disease that are important for surveillance purposes

  • describe the primary purposes of conducting HIV case surveillance

  • describe the differences between HIV case surveillance, advanced HIV disease case surveillance, AIDS case surveillance and HIV sero-surveillance

  • list four types of HIV-related programmes that can report cases to an HIV case surveillance system.



The Relationship Between the Natural History of HIV and Surveillance
Natural history of

HIV and target points

for surveillance

HIV infection produces a disease that lasts for many years. Shortly after becoming infected, an individual may experience signs and symptoms of this initial infection (called primary HIV infection). These signs and symptoms may include fever, muscle aches and swollen glands. Often these symptoms go unnoticed by the infected person. Some people do not experience any symptoms or signs of primary HIV disease.


Following primary infection, most HIV-infected persons are without symptoms for several years. Over time, the immune system of infected persons weakens and this results in the development of HIV-related illnesses. The end-stage of disease has been called AIDS.


      • Prior to antiretroviral therapy (ART), the average time from HIV infection to onset of clinical AIDS in North American patients was 10 years.




      • Without ART, the duration between HIV infection and onset of AIDS is shorter in developing countries than in North America.

The advent of effective ART has considerably reduced the rate of progression to AIDS in areas where these drugs are available. It has also been associated with changes in the types of opportunistic infections that appear with AIDS.



Natural history of HIV and target points for surveillance, continued
In order to fully understand the HIV epidemic, several key stages in the disease should be monitored. These include:


  • HIV incidence (that is the number or rate of new HIV infections)

  • HIV prevalence (that is the number or rate of all persons living with HIV during a specified time period, regardless of how long they have been infected or whether or not they are aware of their infection)

  • The incidence of advanced HIV disease (or AIDS)

  • The prevalence of advanced HIV disease (or AIDS)

  • Deaths from advanced HIV disease (or AIDS).

Measuring each of these points in the course of HIV disease provides for a complete HIV surveillance system. These data can be used to determine the need for prevention or medical interventions and to assess of the impact of such programmes. However, in resource-constrained settings, it is often difficult to include all of these target points in the surveillance system. In those areas where not all of these points can be counted, efforts should be made to obtain information on as many of these as possible.


Measurement

of HIV incidence
In order to know the direction of the HIV epidemic, it is important to have information on the number or rate of new HIV infections occurring in the population. Effective HIV prevention programmes should result in a decrease in the transmission of HIV. Although only a few methods exist for measuring HIV transmission and these methods are far from perfect, there are some tests that can be done to estimate the number and rate of new HIV infections. One method is the BED assay, a serologic test that uses a modified version of a standard HIV test. Although it is not used to diagnose new HIV infections, it is being used as a surveillance tool.
A different and more widely used method of measuring HIV transmission is monitoring of trends in HIV prevalence among the youngest women attending antenatal clinics—for example, females aged 15 to 24 years old. This use of sentinel HIV sero-surveillance has been the most common way of estimating HIV incidence in developing countries.
Though difficult to measure accurately, methods to estimate the number and rate of new HIV infections are valuable and are likely to become an increasingly important component of HIV surveillance.
Measurement of

HIV prevalence
HIV prevalence is the number of persons living with HIV infection during a specified time period. This includes persons with any stage of HIV disease (newly acquired infections, long-standing asymptomatic infections, late-stage disease including AIDS). Prevalence includes HIV-infected persons who may not be aware of their infection. Prevalence does not include HIV-infected persons who have died. It is difficult to have a complete and accurate count of all persons infected with HIV. As a result, prevalence is often estimated. HIV prevalence estimates can be done using a variety of data sources including HIV/AIDS case surveillance systems, HIV sero-surveys and special studies. In developing countries, sentinel sero-surveys of women attending antenatal clinics have been the most frequently used data for prevalence estimates.
Measurement of

advanced HIV

disease/AIDS

incidence

Obtaining an accurate and complete count of persons with advanced HIV disease/AIDS is important as a way to anticipate need for medical care and other support services. These data can also be used as a measure of the success of treatment of HIV disease at earlier stages. In countries where ART is becoming increasingly available, the number of persons with advanced HIV disease/AIDS should decline, even in the face of ongoing HIV transmission.


Counting persons with advanced HIV disease/AIDS is done through case surveillance. Persons with advanced HIV disease/AIDS are symptomatic and, if they seek care, can be reported from healthcare facilities.
Measurement

of HIV-related

mortality

Deaths from AIDS have dropped dramatically in countries where antiretroviral treatment has been widely used. Thus, tracking deaths from advanced HIV disease/AIDS is an important measure of the success of treatment programmes. In addition, understanding the proportion of deaths from HIV-related disease and the age groups most severely affected is an important measure of the magnitude of the problem. However, in order to accurately count and track trends in HIV-related deaths, countries must have well-functioning vital statistics registries. Alternative methods for mortality surveillance exist and can be used in countries in which vital statistics registries need major strengthening.



History of HIV/AIDS Case Surveillance
The start of

AIDS case

surveillance

In 1981, surveillance began for a newly recognised constellation of diseases now known as AIDS. AIDS has been characterised by a set of diseases (called AIDS-defining opportunistic illnesses).


The U.S. Centers for Disease Control and Prevention (CDC) developed a surveillance case definition for this syndrome that was based entirely on the presence of one or more of these AIDS-defining illnesses. Over time, it was determined that AIDS was the result of infection with HIV, and in 1985, a serologic test for HIV was developed and rapidly became widely available. The inclusion of diagnosis of HIV infection became an integral part of the AIDS case definition in the United States.
As the epidemic grew, countries established their own surveillance systems for this new condition. The World Health Organization’s (WHO) Global Programme on AIDS (GPA) assumed global co-ordination and technical leadership for surveillance, including the development of clinical and surveillance case definitions.

The initial WHO AIDS case definition (Bangui) was based entirely on the presence of AIDS-defining illnesses. However, as HIV testing became available in developing countries, the WHO AIDS case definition was expanded in 1994 to include serologic results. In some countries, the expanded case definition has not been used consistently because of:




  • inadequacy of HIV testing reagents

  • poor laboratory infrastructure

  • lack of training of health personnel

  • lack of quality control procedures.







Previous WHO

Recommendations
Previously, WHO had recommended two approaches to AIDS case surveillance; universal and sentinel case reporting. In universal AIDS case reporting, all healthcare facilities reported patients with AIDS using the integrated disease surveillance, in which a standard report form is used to collect aggregate data on all reportable communicable diseases. The goal with universal reporting was to streamline reporting practises and to minimise duplication of effort. WHO also recommended that sentinel AIDS case reporting be conducted as a complementary activity to universal AIDS case surveillance.
In sentinel AIDS case surveillance, a few diligent healthcare facilities were selected to report detailed information on the AIDS cases they treated. Sentinel AIDS case surveillance provided more information on AIDS cases than did universal AIDS case surveillance, but the former only included AIDS cases from selected facilities. Consequently, universal AIDS case surveillance provided a more complete count of the number of AIDS cases, while sentinel AIDS case surveillance provided more detailed information on AIDS cases.
Current need

for HIV case

surveillance

ART has dramatically altered the natural history of HIV disease. Antiretroviral medications delay progression from HIV disease to the advanced stages of HIV disease and reduce HIV-related mortality. In fact, one measure of the success of ART programmes is an unchanging (or increasing) HIV prevalence with a concurrent decrease in AIDS incidence and HIV-related deaths.


Prior to the widespread use of ART, AIDS case surveillance could provide a reasonable estimate of the prevalence of HIV infection (including asymptomatic HIV disease, as well as advanced HIV disease and AIDS). The expected reduction in AIDS incidence in the presence of expanded use of ART means that AIDS case surveillance cannot provide a stable way of monitoring the HIV epidemic.
An additional change that supports the need for movement to HIV surveillance is the expanded availability of HIV testing, including use of rapid HIV tests. As HIV testing in developing countries becomes more widespread, it provides the opportunity to monitor HIV infections that may occur prior to the development of AIDS. In other words, asymptomatic HIV-infected persons can also be monitored. Expansion of AIDS case surveillance to include persons with HIV infection who have
Current need for HIV case surveillance, continued
not developed late stage HIV disease (AIDS) may provide a more complete picture of the HIV epidemic.
Thus, there are two significant reasons to conduct HIV case surveillance:


  • to provide a complete count or estimate of the number of persons with HIV infection

  • to measure the effectiveness of treatment programmes and other interventions.

Several factors must be in place for an HIV case surveillance system to work. These are:




  • people at risk for HIV infection must be tested

  • people must feel that there is a benefit to getting an HIV test

  • people who are receiving HIV tests must feel that their privacy will be protected.

Outputs of

HIV case

surveillance

Accurate, timely and complete information on persons with HIV infection is required to:


  • determine the burden of disease attributable to HIV in the country/region

  • assess trends in incidence and prevalence of HIV infection and disease

  • determine the burden and impact of HIV on health services

  • provide information on the opportunistic infections associated with advanced HIV disease

  • determine the characteristics and risk factors (transmission categories) of persons with HIV infection

  • use data from HIV surveillance for:

    • advocacy

    • resource mobilisation and allocation

    • programme planning for prevention, support, care and treatment

    • targeting interventions to appropriate sub-populations

    • monitoring and evaluation.

Surveillance

terminology

It is important to note that HIV case surveillance is not the same thing as HIV sero-surveillance. These systems have different goals and different uses; they are complementary, not competing. A complete surveillance system will have both. Table 4.2 explains HIV surveillance terminology.


Table 4.2. HIV Surveillance terminology.


HIV sero-surveillance (also called HIV sero-prevalence)

  • measures the prevalence of HIV infection using serological survey methods

  • does not report on individual patients

HIV case surveillance

  • reports persons diagnosed with HIV infection, regardless of clinical stage or immunological status

Discussing

the table

Looking at Table 4.2, answer the following questions:




  1. Which clinical stages are included in HIV case surveillance?




  1. What is one difference between HIV case surveillance and HIV sero-surveillance?


Sources of HIV Case Surveillance Reports
Programme

data and

case surveillance

data
Patient information collected at programmes that provide service or care to persons with HIV infection can be used in two different ways:

  • as a source of information for the completion of HIV case surveillance reports

  • as a source of data to supplement HIV case surveillance data and data from HIV sero-prevalence surveys in annual HIV/AIDS epidemiological profiles and other such reports.

Programme data can provide information for HIV case surveillance if:




  • programmes collect and retain patient-level information

  • systems are in place (at facilities that do HIV diagnosis) to record that cases have been reported to the surveillance programme

  • programme staff are trained on how to report cases and have access to case surveillance forms (passive surveillance method) or surveillance officers provide assistance in completing case report forms (active surveillance).

In addition, case reporting is more likely to occur if surveillance officers:




  • meet with programme managers to discuss the importance of case surveillance, provide case surveillance forms and conduct training

  • adequately assure the security and confidentiality of case information (particularly if cases are reported using patient names)

  • provide regular feedback to the healthcare workers/providers regarding the results from case surveillance.

Supplemental programme monitoring data may be obtained from:




  • voluntary counselling and testing sites: data on numbers tested and percent HIV-infected

  • programmes for prevention of HIV transmission from mother to child: data on number of women tested, percent positive, percent of positives provided with ART, percent of babies tested for HIV, percent of babies with HIV infection

  • care and treatment programmes: data on persons receiving HIV support, care and ART treatment, data on survival time after start of treatment, early warning indicators for emergence of HIV drug resistance, etc.

  • services for orphans and vulnerable children.

Programme data and case surveillance data, continued
To ensure efficient use of time and resources, those programmes that serve the largest number of HIV-infected persons should be targeted for assisting with case reporting. Ideally, these sites would be used for active case reporting.
Section 4.1 Exercises
Warm-up

review


Take a few minutes now to look back at your answers for the warm-up questions at the beginning of the unit. Make any changes you want.
Small group

discussion

Get into small groups to discuss these questions.


  1. Which AIDS case definition has been used in your country, the Bangui definition, the WHO expanded case definition or something else? Discuss the utility of this case definition. Has it undergone any changes in the past? If yes, when and why?



  1. Does your country have a functional HIV and/or AIDS case surveillance system? Specify which system exists.



  1. If your country is not conducting HIV and/or AIDS case surveillance, discuss why.



  1. If your country does have an HIV or AIDS case surveillance system:

a. Who does the reporting and from what types of facilities?

b. How have the data from the system been used?





  1. Is HIV case surveillance conducted in your country?


  1. Describe existing challenges in your country that affect efficient HIV case surveillance. What are some possible solutions for these challenges?


Apply what

you’ve learned/

case study

Work on this case study independently.




  1. You are the national surveillance officer in Cariba, which is estimated to have one of the highest prevalence rates of HIV in the region. The national AIDS control programme is interested in expanding and improving its surveillance programme, and the CAREC epidemiologist is conducting country visits to discuss ways of improving surveillance. During your meeting with the CAREC epidemiologist, you are asked to suggest additional surveillance activities in your country that you believe could be implemented and successful. Describe what these activities would be.




  1. The CAREC epidemiologist has indicated that there is interest in using data collected from HIV and other care programmes for HIV case surveillance. What programmes would you suggest using?


Section 4.2: Clinical Staging and Surveillance Case Definitions for HIV infection
What this

unit is about

This unit provides an overview of the history and purpose of clinical staging and surveillance case definitions for HIV infection. It includes:


  • a brief history of the clinical staging system and surveillance case definitions for HIV infection

  • a description of the recent (2006) WHO HIV clinical staging criteria and criteria the presumptive and definitive diagnoses

  • a description of the recent (2006) WHO surveillance case definitions

  • an explanation of the link between HIV clinical staging, antiretroviral treatment recommendations, and HIV case surveillance

Warm-up


questions

  1. True or false? In the revised (2006) adult and paediatric WHO HIV clinical staging systems, there are four clinical stages.

True False




  1. True or false? The revised (2006) WHO advanced HIV infection case definition includes the same clinical stages for adults and infants.

True False




  1. List the three options for HIV case surveillance that are recommended in the revised (2006) WHO guidelines.



  1. True or false? The clinical criteria included in the revised (2006) WHO advanced HIV infection surveillance case definition only include definitive diagnosis of clinical events.

True False

Warm-up questions, continued


  1. List four reasons why HIV clinical staging systems were developed.



  1. True or false? Previous surveillance case definitions in developing countries focused only on stage 4 (AIDS).

True False





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