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Tools for Grantees: Needs Assessment Guide

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Section V
"How-To's
"

This section describes how to complete various needs assessment tasks. Each chapter provides an overview, factors to consider, definitions, key steps, and examples.

Chapter 1. Obtaining "Human Resources" for Needs Assessment

Chapter 2. Preparing an HIV/AIDS Epidemiologic Profile

A. Introduction

B. Data Types and Sources

C. Preparation of an HIV/AIDS Epidemiologic Profile

References

Chapter 3. Using Poverty, Insurance Status, Co-Morbidity, and Surrogate Marker Data
Chapter 4. Collecting "Primary Data"
Chapter 5. Preparing a Resource Inventory and a Profile of Provider Capacity and Capability
Chapter 6. Estimating and Assessing Unmet Need


Chapter 2. Understanding the HIV/AIDS Epidemiologic Profile

A. Introduction  TOP

An HIV/AIDS epidemiologic (or "epi") profile describes the current status of HIV/AIDS cases in the service area (overall and for subpopulations) and provides some understanding of how the epidemic may look in the future. While other sections of the needs assessment may be updated only every two to three years, the HIV/AIDS epi profile is updated annually in order to provide current data to:

  • Document trends in HIV/AIDS cases
  • Identify populations and geographic areas with severe need
  • Present projections of the future caseload, ande
  • Help calculate unmet need.

In general, the responsibility of developing an epidemiologic profile falls primarily on health departments. Planning bodies use this information in their needs assessment to get a clear and accurate picture of the current epidemic and where it may spread in the future. Planning bodies should use this chapter to gain a better understanding of the process and components of an epidemiologic profile.

EPIDEMIOLOGY

Epidemiology (from the word epidemic) is the study of factors associated with health and disease and their distribution in the population. Epidemiology typically addresses such aspects of a disease as its causes, the number of cases, their distribution both geographically and among different populations, and trends in the disease. Epidemiologists investigate the causes of health and disease in populations in order to prevent or control poor health outcomes and improve health status.

Many of the concepts and strategies described in this chapter also apply to co-morbidity data such as sexually transmitted diseases (STDs) and tuberculosis (TB), which are discussed in the next chapter. Be sure to review these two chapters as a unit.

Uses of Epi Profiles

The epi profile provides information needed for many purposes, such as the following:

  • Setting priorities and allocating resources. (For Title I planning councils, this also includes advising the grantee concerning how best to meet service priorities.) The information on trends in the epidemic and disproportionately affected populations and geographic areas are especially important for priority setting.
  • Meeting application requirements. For most titles, epi data are used to complete required application tables on AIDS incidence and prevalence, HIV prevalence, and assessment of particular populations or populations with special needs, and to prepare a narrative that documents the need for HIV/AIDS services. For example, epi data help document severe need; establish the need for early intervention services; and demonstrate service needs of specific populations.
  • Planning for an appropriate and appropriately located continuum of care. Epi data indicate changes in the epidemic. Comparing CARE Act Data Report (CADR) data on current clients with epi data on the composition of the HIV or AIDS population helps to identify underserved populations and plan how they can be better reached and served. Reviewing data by geographic area can help a Title III or IV applicant decide on service area boundaries. Epi data by area help grantees and providers target outreach efforts, assess capacity development needs, determine where additional services need to be located or transportation provided, and otherwise ensure that services are available for particular populations in specific locations.
  • Developing provider RFPs and subcontracts. Information from the epi profile can identify requirements to include in provider subcontracts. For example, if epi data make it clear that certain populations or geographic areas are underserved, the grantee or administrative agency may want to ensure that the Request for Proposals specifies requirements for outreach and services to these populations or areas. A decision may be made to seek out additional providers with demonstrated capacity to serve these populations or geographic areas. The provider subcontract may require regular reporting on progress towards serving such populations or geographic areas, or a performance contract may specify that a certain percentage of clients must fit these categories.
  • Increasing general community awareness of HIV/AIDS. Epi data provide the factual base for educating those involved with HIV/AIDS planning and service provision, other health and human service providers (including private health care professionals), and the broader community about the current and coming HIV epidemic and its practical implications.
  • Modifying planning body membership composition. If the epi profile, especially three- to five-year projections based on HIV prevalence data, shows major changes in the epidemic, this information can be used to assess the reflectiveness of a planning body; identify underrepresented populations; and begin to focus recruitment efforts.

To maximize the use of the epi profile, be sure that copies are available for planning body members, grantee and planning body staff, and with both prevention and care providers, and that it is shared with grantees funded through other CARE Act titles and (if not prepared jointly) with the HIV prevention community planning group.

Data Presented in the Profile  TOP

The epi profile uses a combination of tables and narrative to present statistical information on the HIV/AIDS epidemic within a service area. Epidemiologic tables typically present quantitative (statistical) HIV/AIDS data by demographic and exposure categories. The narrative interprets the data provided in the tables and describes the HIV/AIDS epidemic by making comparisons, analyzing trends, and drawing conclusions about the data.

The HIV/AIDS epi profile should describe the service area and the distribution of HIV/AIDS cases among defined populations. Its main components are:

  • AIDS data, presenting data on people who are living with AIDS and those who have died from AIDS-related illnesses
  • HIV data, presenting data (reported or estimated) on HIV-infected persons who have not developed AIDS, and
  • Trends, analyzing changes in the epidemic over time.

Because all HIV/AIDS data are not "created equal," a profile should also discuss the strengths and limitations of different types and sources of information.

GUIDELINES FOR CREATING EPI PROFILES
FOR CARE AND PREVENTION

Guidelines for developing a joint epidemiologic profile that will meet the needs of both CARE Act and HIV prevention planning bodies have been prepared by HRSA's HIV/AIDS Bureau (HAB) and the Centers for Disease Control and Prevention (CDC). Called Integrated Guidelines for Developing Epidemiologic Profiles, they update past materials, such as 1995 CDC guidelines, and were developed with extensive stakeholder input and incorporate new types and sources of data and analytic methods. To obtain the guidelines, and an accompanying self-assessment tool for use by epidemiologists and planning groups in reviewing their epi profiles, see the HAB website Planning/Needs Assessment Tools or call the HRSA Information Center at 888-ASK-HRSA.

 

REQUIREMENTS BY TITLE

The application guidance for each CARE Act title requires applicants to complete a number of tables with specific HIV/AIDS data. These tables are the start—but only the start—of an epidemiologic profile. While different titles may focus their analyses on different populations or geographic areas (e.g., women, children, youth, and families for Title IV applicants; States for Title II grantees), CARE Act application guidances generally ask for similar types of information. Title III and IV applicants are permitted to conduct a much less extensive needs assessment than Titles I and II. Because of collaboration requirements and the need for a coordinated system of care, the epi profile should include the information needed by those titles.


B. Data Types and Sources  TOP

The HIV/AIDS epi profile is usually developed using secondary source data provided primarily by the CDC or the State and/or local health department, perhaps supplemented by special studies conducted in your service area. One advantage of using secondary source data is that such information is already available. In deciding what secondary source data to use, be sure to consider its completeness and/or accuracy. For example, HIV prevalence data in some States and localities are not yet reported on a timely basis, and may be incomplete.

Types of Data  TOP

Preparation of an epidemiologic profile requires knowledge of the types of data available, where they can be found, and their limitations. An HIV/AIDS epidemiologic profile typically includes reported AIDS cases, reported (or estimated) HIV cases, and projected HIV and AIDS cases. Data or estimates related to specific subpopulations (e.g., men who have sex with men, injecting drug users, African Americans, women) and specific geographic areas (e.g., three counties in the eastern part of the State) are particularly important in understanding the spread of the epidemic within your service area.

DEFINING AND REPORTING AIDS CASES

Over the years, changes have been made in the AIDS reporting criteria to reflect new understanding of HIV disease and changes in medical practice. Each successive definition—pre-1987, 1987, and 1993—expanded the list of AIDS-defining conditions. The 2000 revised HIV surveillance case definition incorporates positive results or reports of a detectable quantity of HIV nucleic acid or plasma HIV RNA. CDC's HIV/AIDS Surveillance Report includes a table of reported AIDS cases for the most recent reporting years by definition. This allows for comparisons in AIDS rates across longer periods of time and different AIDS case definitions.

Two main types of data are used in preparing the HIV/AIDS epi profile:

  • AIDS case surveillance. These data provide information about AIDS cases in a particular area and among particular populations. AIDS case surveillance data are typically broken down by year of reporting, and by age, gender, race/ethnicity, and mode of transmission. Because effective therapies have lengthened the already long period between infection and becoming symptomatic, AIDS surveillance data no longer reliably reflect recent trends in HIV transmission. However, this information remains important in assessing access to care for different populations.
  • HIV case surveillance. HIV case surveillance data (which are now reported by most States and territories) better characterize populations more recently diagnosed with HIV. HIV surveillance data are a more reliable indicator of the current and future status of the epidemic and of the impact on specific populations. For this reason, there is increasing emphasis on the use of HIV data in HIV/AIDS epi profiles.

Most HIV/AIDS case surveillance data are reported in terms of prevalence rates (number of living HIV or AIDS cases per 100,000 population) and incidence rates (number of new HIV or AIDS cases that occur in a particular time period per 100,000 population). However, incidence and prevalence rates can be computed only when both surveillance and population data are available. For example, AIDS incidence among white men can be determined because Census data tells us the total number of white men in a given geographic area. AIDS incidence among white gay or bisexual men cannot be calculated accurately because no official count exists of the total gay or bisexual male population—or many other populations of interest. If available, data from local studies may be used to calculate estimates of seroprevalence in particular populations within a service area (e.g., gay or bisexual men of color, injection drug users).

DEFINITIONS

Prevalence rate. The number of living cases of HIV or AIDS per 100,000 population.

Incidence rate. The number of new cases of HIV or AIDS that occur in a specified time period per 100,000 population.

Cumulative incidence. The total number of new cases that have been diagnosed and reported from the time reporting began to the most recent reporting date.

Sources of HIV/AIDS Data  TOP

The most common sources of HIV/AIDS data are CDC's HIV/AIDS Surveillance Report and National HIV Serosurveillance Summary. Both are compiled from data provided by localities and States. Additional local/State data are compiled from health departments, clinics and other sites. Each is described below.

HIV/AIDS Surveillance Report  TOP

The most familiar national source of AIDS surveillance data is the HIV/AIDS Surveillance Report produced by CDC. Detailed State and local AIDS surveillance data, which are the basis for CDC data, are routinely compiled by State and/or local health departments. Available on a regular basis from CDC, the Report uses data from the most recent reporting year to provide information on:

  • AIDS incidence, prevalence, and deaths
  • Diagnosed HIV cases and HIV (non-AIDS) prevalence, and
  • Trends over time.

These data are presented by mode of transmission, race/ethnicity, age, gender, and geographic area.

The June 2001 Report provides detailed HIV data for 34 States and two territories. Until HIV reporting is more complete and reliable, CDC cannot provide data on total HIV prevalence for all States or other geographic areas. Moreover, a number of areas recently began HIV reporting, so there is little or no trend data available from these areas. CDC provides HIV prevalence estimates for non-reporting States and for States that are just beginning to report HIV cases. New guidelines for a joint epidemiologic profile from CDC and HRSA/HAB will help health departments better prepare profiles that provide data for use in needs assessment and planning.

HIV SURVEILLANCE

As of December 2001, 47 States plus three territories (Guam, the U.S. Virgin Islands, and Puerto Rico) reported HIV infections to CDC. These areas conduct HIV reporting using several different methods, such as name-based, code-based, and name-to-code-based reporting.

However, HIV case reporting data sufficient for inclusion in CDC's HIV/AIDS Surveillance Report were available for only 34 States, Guam, and the U.S. Virgin Islands as of June 2001. Another eight States and territories (HI, IL, KY, MD, MA, PR, RI, and VT) have implemented a code-based system to conduct case surveillance for HIV infection. Some other areas (DE, ME, MT, OR, and WA) have implemented a name-to-code system to conduct HIV infection surveillance. (Names are collected and after any necessary public health follow-up, the names are converted to codes to provide an additional level of anonymity.) The June 2001 Report does not report HIV data from these other areas and will not report it until:

  1. CDC receives findings from an evaluation that demonstrates acceptable performance under CDC guidelines, and
  2. Methods to report such data to CDC are developed.

In addition, CDC surveillance reports include only confidential HIV infection reporting. According to the CDC, "anonymous test results are not reported to State and local health departments' confidential names-based registries. Therefore, confidential HIV infection reports may not represent all persons who tested positive for HIV infection." This means that the HIV surveillance data included in the Report "provide a minimum estimate of persons known to be HIV infected in States with confidential HIV reporting."

The HIV/AIDS Surveillance Report provides national data on new and cumulative reported AIDS and HIV cases, with breakdowns by State and metropolitan area, gender, age group, exposure category, race/ethnicity, and other categories. The Report also presents case fatality rates (i.e., the percentage of deaths reported among people whose cases were diagnosed during a specified period) and the estimated incidence of AIDS-defining opportunistic illnesses (AIDS-OI). The Report is published twice a year, in July (the mid-year report) and December (the final report). It is available online from the CDC website or from the CDC Prevention Information Network (formerly the CDC National AIDS Clearinghouse).

The HIV/AIDS Surveillance Report presents data on AIDS and HIV cases in a number of different formats. Some of the most useful for Ryan White CARE Act titles include the following:

  • AIDS cases and annual rates per 100,000 population, by State and by metropolitan area. This is the primary source of counts of the annual and cumulative number of AIDS cases for States and metropolitan areas, with separate totals for adults and children.
  • AIDS cases by exposure category, age category, sex, and race/ethnicity in the United States. These tables provide national data on AIDS cases according to a fixed set of exposure categories, which differ for adult/adolescent and pediatric cases (children under 13). They include both the number of cases reported for each exposure category and the percent of cases in that category.
  • AIDS cases by year of diagnosis and definition category in the United States. These national data provide information on the number of AIDS cases over the years, using one of three definitions: pre-1987, 1987, and 1993. Using each of the three definitions, this table lists the number of reported AIDS cases by year of diagnosis.
  • HIV infection cases by area and by exposure category, age category, sex, and race/ethnicity, for reporting States and metropolitan areas within those States.

National HIV Serosurveillance Summary  TOP

CDC also periodically publishes a National HIV Serosurveillance Summary, which provides information on the level of HIV infection among selected populations that have been targeted for surveys. The Summary presents the findings of HIV seroprevalence reports that determine the percentage of people testing HIV-positive in high-risk groups (e.g., persons tested at STD clinics) and other groups (e.g., pregnant women). The report shows the median HIV seroprevalence rate and range of percentages for each type of testing site and geographic location. Sometimes data are broken down by State or EMA or by gender, race/ethnicity, and exposure categories to show geographic and epidemiologic patterns of HIV infection.

Other Local/State Data  TOP

Other sources of HIV data may include local/State health departments, clinics, drug treatment centers, and correctional facilities. Information from local sources may be helpful for identifying HIV trends in certain subpopulations. For example, your Title I EMA may include several prisons and provide services to many former inmates after their release. There may be a perception that the rate of HIV infection in the State prison system is rising faster than that of the general population. To confirm this, the CARE Act planning body might work with the State correctional medical director to obtain the number of AIDS cases, number of HIV-positive individuals, and estimated HIV prevalence among the prison population in the service area.

The following table was developed by CDC as part of the CDC/HRSA collaborative project that is developing guidelines for preparing an epidemiologic profile. The table summarizes various sources of HIV/AIDS data and lists their major strengths and limitations.

Types of Data Used in Epidemiologic Profiles

Type of Data
Description
Where to Obtain
AIDS Surveillance

AIDS has been a reportable condition in all States and territories since 1981. The AIDS surveillance system was established to:

  • Monitor incidence and the demographic profile of AIDS
  • Describe the modes of HIV transmission among persons diagnosed with AIDS
  • Guide the development and implementation of public health intervention and prevention programs; and
  • Assist in the evaluation of the efficacy of public health interventions.

States and local health departments actively solicit disease reports from health care providers, laboratories, and other sources of information. Standardized case report forms are used; these forms collect

  • Sociodemographic information
  • Mode of exposure
  • Testing history, and
  • Clinical information.

AIDS surveillance has been determined to be 80-90% complete.

All 50 States, Los Angeles, San Francisco, Houston, Chicago, Philadelphia, New York City, Washington DC, U.S. Territories collect AIDS surveillance data. Contact your State or local service area's HIV/AIDS Surveillance coordinator.
HIV Surveillance HIV surveillance data include all persons who meet the 1999 case definition for the Human Immunodeficiency Virus (HIV) case definition and have been reported to a local surveillance authority. HIV surveillance data provide a minimum estimate of the number of known HIV-infected individuals, identify emerging patterns of transmission, and can be used to detect trends in HIV infections among populations of particular interest (e.g., children, adolescents, women) that may not be evident from AIDS surveillance. HIV surveillance provides a basis for establishing and evaluating linkages to the provision of prevention and early intervention services, and can be used to anticipate unmet needs for HIV care. Based upon State evaluations, HIV infection reporting is estimated to be 80-90% complete for persons who have tested positive for HIV. Data are reported by State health departments to the CDC. Contact your service area's HIV/AIDS Surveillance coordinator for information.
Clinical Data Clinical data refers to information obtained on the clinical condition(s) of persons diagnosed with HIV or AIDS. Clinical information is collected on persons diagnosed with HIV or AIDS for the purpose of understanding the recentness of infection (i.e., from a rapid HIV test), the disease status and progression (i.e., CD4+ cell count, viral load, opportunistic infections), the type of medical care received, prescription of anti-retroviral therapy, and the type of therapy received. In addition, patient surveys collect clinical information to assess adherence to therapy and health care seeking behavior. Depending upon the source of clinical data, the data may be representative of all cases of reported HIV and AIDS or only a fraction of cases. Because clinical data relies on the extent of documentation on a medical record and the ability to locate a medical record, clinical information may be incomplete. Refer to medical records and patient surveys from providers in your service area.
Behavioral Surveillance

Data on behaviors that are relevant to HIV prevention, transmission, and medical care are available from a variety of sources including general population surveys, surveys of populations at risk for HIV, and surveys of persons diagnosed with HIV and/or AIDS. Behavioral data collects information such as:

  • Patterns of HIV testing
  • Substance use
  • Sexual behavior including unprotected sex
  • Sexual orientation
  • Health care seeking, and
  • Adherence to prescribed anti-retroviral therapies (among HIV positives).
Please refer to (data inventory) to locate sources of behavioral data available in your service area.
Sexually Transmitted Disease (STD) Surveillance

STD surveillance captures data on reports of sexually transmitted diseases, such as syphilis, gonorrhea, chancroid, and chlamydia in a service area. STD surveillance data can be used to obtain:

  • The number of cases of a specific STD
  • The prevalence of an STD, and
  • The incidence of an STD in a service area.

Demographic, clinical, and limited behavioral data (i.e., sexual orientation) are available within STD surveillance data. STD surveillance data may serve as a surrogate marker for unsafe sexual practices or monitor infections among a specific risk population (e.g., rectal gonorrhea among men who have sex with other men [MSM], STDs among crack users). STDs are reportable in all 50 States, U.S. territories, and cities with < 200,000 population. Despite widespread availability, reporting of STDs from private-sector providers may be less complete. And, although STD infections are the result of unsafe sexual behavior, STD risk behaviors do not necessarily correlate with HIV risk.

STD surveillance data are available in all 50 States, U.S. territories, and cities with populations greater than 200,000. Contact your service area's STD Program Manager for information.
Tuberculosis (TB) Surveillance

All 50 States, the District of Columbia, New York City, Puerto Rico, and other U.S. jurisdictions in the Pacific and Caribbean report Tuberculosis (TB) cases to CDC using a standard case report form. In 1993, in conjunction with State and local health departments, CDC implemented an expanded surveillance system for TB to collect additional data to better monitor and target groups at risk for TB disease, to estimate and follow the extent of drug-resistant TB, and to evaluate outcomes of TB cases. Although information on HIV status among reported TB cases is available, the information may not be complete for the following reasons:

  • Confidentiality concerns that limit the exchange of data between TB and HIV/AIDS programs;
  • Local or State laws and regulations that prohibit the HIV/AIDS program and TB program from sharing information among themselves on patients in their programs
  • Reluctance by health care providers to report HIV test results to the TB surveillance program staff; and/or
  • A lack of counseling and HIV testing for some TB patients.
Tuberculosis surveillance data are available in all 50 States, and U.S. territories. Contact your service area's Tuberculosis Program Manager for information.
Hepatitis B and C Surveillance Data on hepatitis B and C infections may represent markers for unsafe needle sharing and sexual behaviors, which can be risk factors for HIV transmission. Hepatitis B and C data could be used to predict the likelihood and rate of future spread of hepatitis and HIV infections in a specific community, monitor trends, and identify needs for HIV prevention and care services. Although acute hepatitis (i.e., clinical illness) is reportable in all States, only a few States conduct surveillance for acute cases of hepatitis C to monitor disease incidence. In addition, surveillance for hepatitis C cannot differentiate between newly acquired infections and infections acquired in the past, making it difficult to monitor disease trends. Limited Sources are available to locate surveillance data. Some States have requirements for reporting of HCV- positive laboratory tests, most of which represent persons with resolved or chronic HCV infection. Otherwise, refer to CDC's National Notifiable Disease Surveillance System (NNDSS) and the CDC Hepatitis Branch.
Vital Records

Vital records capture information, as stipulated by State statutes, on all births and deaths that occur within the 50 States, the District of Columbia, and U.S. territories. Death records contain the following information:

  • The cause of death according to the rules of the NCHS and the International Classification of Diseases (ICD-9 or ICD-10)
  • Time of death; and
  • Demographics of the deceased.

Birth records include sociodemographic information on the baby, mother, and father; maternal health care during pregnancy; and the baby's health at birth.

All States maintain registries of deaths. Contact the State Vital Records Registrar.
Demographic Data

Demographic data are used to describe social characteristics (e.g., sex, age, race/ethnicity) of the service area.

Demographic data can be obtained for State and metropolitan areas from the Census Bureau. Additionally, States maintain statewide Census centers.
Socioeconomic Data Socioeconomic data are used to describe economic characteristics (e.g., income, education, poverty level) of the service area. Socioeconomic data can be obtained for State and metropolitan areas from the Census Bureau and Bureau of Labor Statistics. Additionally, States maintain statewide Census and Labor Statistics centers.
Healthcare Utilization Healthcare utilization data can help assess the impact of co-morbidities on the costs and complexity of providing HIV care to clients in a service area. The data can help addresses a broad array of issues relevant to public policy formulation and health research including: cost, use, and quality of care; access to care; service needs related to care; quality of life; social support; knowledge of HIV; clinical outcomes; mental health; and the relationship of these variables to provider type and patient characteristics. The Agency for Healthcare Research and Quality (AHRQ) makes available data from the HIV Cost and Services Utilization Study (HCSUS)
Substance Abuse Data Substance abuse data are obtained from population-based surveys and medical examiner records, correctional facilities, law enforcement agencies, and drug treatment center records. These sources of information describe the patterns of drug use, the prevalence of drug use, and the consequences of drug use among the general population and specific populations. National Institutes of Health; SAMHSA for drug use survey information, treatment episode data, and drug abuse data; National Institute of Justice for drug abuse among arrestees.
Qualitative Surveys Qualitative surveys capture information using observational methods, interviews, discussion groups, focus groups, and analysis of social networks. Qualitative surveys are often conducted by health department staff and local community researchers.

Certain types of HIV/AIDS data are not available in all areas. Most serologic studies (screenings of blood samples) are limited to specific States or locales-usually those with a high incidence of AIDS. Some data may not be available from organizations not traditionally associated with HIV/AIDS services (e.g., drug treatment centers, correctional facilities) or may be difficult to obtain because of confidentiality or issues of protocol in handling data. The following table shows the availability of various types of HIV/AIDS data and where they can be found.

HIV/AIDS SURVEILLANCE SYSTEMS

HIV/AIDS Reporting System (HARS). Updated surveillance data for HIV/AIDS available for all 50 States and territories of the U.S. AIDS cases are reported to the CDC using the 1993 AIDS surveillance case definition and case reporting form. Data include AIDS incidence since 1996 by U.S. region, demographic characteristics, and mode of HIV exposure.

Supplement to HIV/AIDS Surveillance (SHAS). Data available from interviews of persons 18 years of age or older and reported to 12* state/local health departments through HIV/AIDS surveillance. Data include demographics, sexual and drug using behaviors, medical/social services, and medical therapy and adherence since 1990.

Adult/Adolescent Spectrum of HIV Disease (ASD). Data available from a surveillance project conducted in 11 U.S. cities that reviews the medical records of HIV-infected persons aged 13 years or older. Information is collected about demographic characteristics, mode of HIV exposure, and any previous occurrences of conditions listed in the 1993 AIDS surveillance case definition.

*States included in the SHAS project include: Arizona, California, Colorado, Connecticut, Delaware, Florida, Georgia, Michigan, New Jersey, New Mexico, South Carolina, and Washington.

Assessing Data Quality  TOP

The quality of data used affects the validity of an HIV/AIDS epidemiologic profile, how valid people believe it to be, and, ultimately, the legitimacy of decisions that are made based on these data. Therefore, the strengths and limitations of particular sources of data should be discussed, and you should expect such information to be included in the epidemiologic profile for your service area. This information enables you as data users—and others in the community—to judge the reliability of the analyses and the appropriateness of your decisions based on the data.

When you receive the epi profile, carefully review the sources of data and the stated limitations, particularly those of special importance to particular target areas, minority populations, and other defined populations. For example, sometimes data are not separately reported for various population groups, or limited data are available for specific service areas; or data tables in small-scale serologic studies (screenings of blood samples) may not be clear on the number of cases being reported or their sources, but the information may be available in the report's narrative or an appendix.

In reviewing an epi profile, consider the following possible data limitations:

  • Data are from incomplete sources or locations, so the findings cannot be considered representative of the entire population. For example, HIV seroprevalence data from a study of women who were tested for HIV antibodies at family planning clinics in 10 cities may help in understanding HIV trends among family planning clientele in these cities. However, they cannot be generalized to a larger population of women.

Some groups, such as Job Corps and the military, test all entrants for HIV antibodies and report HIV seroprevalence rates by age group, race/ethnicity, and/or gender. These studies allow for the drawing of conclusions about the specific group tested. However, the findings cannot be generalized to all U.S. residents, although they may be used to estimate levels of infection for some populations.

  • Data are from non-random samples and findings therefore cannot be generalized to the larger population. Most HIV seroprevalence studies are based on samples of people who visit a clinic or hospital for a specific purpose. These are called "convenience samples" and include people who come to a certain location during a specific period of time. Injection drug users in treatment facilities, for example, may differ markedly from those not in treatment in terms of insurance status or other characteristics.
  • Data are from a small number of cases, so HIV-positive rates must be viewed with caution. Most seroprevalence studies are based on relatively small segments of the population, so it is very important to know how many people in a particular category were tested. For example, complete serologic reports may be available from a few hundred persons in a particular category—such as teenagers or childbearing women—or from many thousands. Even if the selection process was random, if the interest is in a numerically small subset of that sample (e.g., Asians/Pacific Islanders), the results may not be representative of the total population. That is, nothing definitive can be said of a population of Asian/Pacific Islander teenagers if only a small number were represented in your larger sample of teenagers.
  • There are a large number of cases in which risk factors or other variables cannot be identified. Often, for example, a high proportion of AIDS cases related to heterosexual contact are not further explained; tables from the HIV/AIDS Surveillance Report often label them "sex with an HIV-infected person, risk not specified." If a high proportion—sometimes one-third or more—of the cases fit this category, the percentages for other categories of heterosexual transmission (e.g., "sex with an injecting drug user") must be viewed with caution. That is because most of those in the "not specified" category should be re-classified into the various specific heterosexual transmission categories.

C. Preparation of an HIV/AIDS Epidemiologic Profile  TOP

Who Prepares the Profile

Preparing an HIV/AIDS epi profile is a big job, and usually an epidemiologist at the State or local health department will analyze the collected data and produce the profile. Sometimes a contractor may be hired to carry out this task. The planning body will be a principal user of the profile and therefore should have some input regarding the scope and presentation of the profile. In addition, planning bodies and grantees should be actively involved in their States' plan and process. This helps health department epidemiologists understand the needs of CARE Act grantees and ultimately work toward providing the data they need for needs assessment and planning. The planning body may be particularly concerned with identifying population groups or geographic areas for which specific data are needed. The planning body should also receive training as appropriate to be sure it understands the profile's scope, content, and limitations.

How the Planning Body Should Work with the Epi Team  TOP

Skills Needed

In working with epidemiologists or researchers who prepare the epi profile, a needs assessment committee or team of individuals can help ensure that results are presented in useful formats. This team should have competency in the following areas:

  • Knowledge of the needs of the planning body—to help the writer clarify what the planning body is looking for in the epi profile and how it will use the results (e.g., for priority setting and resource allocation).
  • Communicating to a diverse audience—to ensure appropriate, user friendly language for profile users, including the planning body.
  • Knowledge of the various CARE Act titles and their epi data needs—even if the profile is being developed primarily for the Title I or Title II program, grantees and applicants from other titles will need access to appropriate epi data.
  • Familiarity with clinical aspects of the disease.
  • Skills in data analysis techniques and interpretation.
  • Knowledge of program data needs—to ensure that the profile includes information useful for providers.
  • Knowledge of policy issues—since the profile may be used by local or State legislators or agency staff in setting policies, allocating funds, or establishing priorities.

Keeping Track  TOP

The main steps of producing the HIV/AIDS epi profile are similar to those used to produce other parts of the needs assessment and include the following:

1. The scope of the profile is planned—what information is needed.

2. HIV/AIDS data for an area are identified and obtained.

3. HIV/AIDS data that address the requirements of various titles and programs are analyzed (i.e., estimates of HIV prevalence are obtained if HIV case surveillance data are not available in the State; trends in AIDS and HIV prevalence are analyzed).

4. Analyzed data are presented-a written epi profile is prepared in appropriate formats for intended users.

The planning body should keep track of each step. It should ask about:

  • The scope of the profile—what information is needed. The service area of interest determines the geographic scope of the profile:
    • EMA for Title I
    • State for Title II statewide entities
    • Region for a regional Title II consortium
    • City, county, region, or other self-defined target area for Title III and IV, SPNS, or AETC applicants or grantees
    • A combination for collaborations across titles.

The populations of interest determine the population scope of the profile:

    • Many subpopulations for Title I and II
    • Many or few subpopulations for Title III, depending on program focus, and
    • Women, infants, children, and youth for Title IV.


  • Data sources and the HIV/AIDS data available for the area. Usually, existing data or studies from the health department or other sources will be obtained, but the group giving feedback on the process should be aware and ask about the following data limitations:
    • Representativeness of the data. How well do the characteristics from a sample correspond to those of the target population? For example, HIV surveillance data include only persons who have been tested, and may not be representative of all HIV-infected persons.
    • Small numbers. When data consist of a small number of cases, variations must be viewed with caution. Analysis of small numbers of cases may require the use of more advanced statistical tests. Find out whether limitations were recognized and appropriate methods used.

  • Completeness of the data. How well do the data reflect the true number of people who are infected? For example, how well does the number of AIDS cases represent the true number of person living with AIDS in your service area? The completeness of AIDS case reporting is tested by comparing the data with data from an independent data source. Where available, were comparison data used?
  • Age of the data. What year were the data collected? Is this the most recent information available from CDC? from other sources?
  • Timeliness of the data. How great is the typical time lag between the diagnosis and reporting of HIV or AIDS in your service area? Often HIV reporting lags well behind diagnosis, so current data do not represent current trends.
  • Limitations of the data source or variable of interest. Limitations may be intrinsic to the data source or variable. For example, your area may not yet have reliable HIV case reporting. AIDS case data may be the only HIV-related data that are available on a population-wide basis by sex, race/ethnicity, age, and mode of HIV exposure. However, AIDS case data do not reflect the characteristics of people who were recently infected with HIV. What are the implications for understanding the current epidemic and projecting trends?
  • Surrogate/proxy markers. A proxy variable is used as a "marker" or substitute for other variables when what we really want to measure is unavailable or too difficult to measure directly. For example, some areas may use STD data as a proxy when HIV/AIDS data are not available.
  • Validity of the data. How well does a variable measure what it is intended to measure? In the example above, how well do STD data reflect the actual risk of HIV/AIDS?
  • Ensure that analyses of HIV/AIDS data addresses requirements of the title and program. The following table provides a list of different types of analyses that should be included in an epi profile that is being used by a community planning group for their needs assessment.

Analyses of HIV/AIDS Data for an Epi Profile  TOP

Type of Data
Analyses of Data
AIDS
  • AIDS cases and annual rates per 100,000 population in your service area (State, EMA, county, city, or other defined geographic area)
  • AIDS cases by residence at diagnosis (region, county, zip code, or census tract), including demographic characteristics, such as age, sex, and race/ethnicity
  • AIDS cases by exposure category, including demographic characteristics, such as age, sex, and race/ethnicity in your service area
  • AIDS rates per 100,000 by geographic area (e.g., county) and population (e.g., Latinos), by year of reporting
  • AIDS cases by stage of illness
HIV
  • State and/or service area HIV seroprevalence
  • HIV prevalence by geographic area and population, by year of reporting
  • Trends in HIV seroprevalence for different populations
  • Comparisons of HIV prevalence across populations
  • Request a presentation and a written report of the completed epi profile. Planning bodies should request a presentation of the HIV/AIDS epi profile that meets application guidance requirements and the needs of users (e.g., overall planning body, health department, service providers, people living with HIV disease). The presentation and hard paper copies should include the following:
    • Figures. Tables and graphs that are clearly labeled, easy to understand, and linked to the text through a narrative that explains the data;
    • A glossary of terms. Definitions of all the technical and epidemiologic terms used; and
    • A consistent format. A profile that is clear and easy to read, with a consistent format in terms of headings, references, technical level, and other report details.

Examples 1-3 below show different ways of that HIV/AIDS data are presented. While planning body members will not develop charts and graphs, they should be familiar and know how to interpret different types of graphs, charts, and tables.



Example 1. AIDS Prevalence Rates in This County

Sec.V, Chap. 2, Example 1 - Graph showing  Adolescent/Adults AIDS Prevalence by Race/Ethnicity, 1997-2001 in cases per 100,000 persons. The African American rate begins at about 68, rises to about 85 by 2000 before leveling off. The Hispanic/Latinos rate begins at about 50, and rises to 70 by 2001 with a plateau in 1999-2000. The Caucasian rate starts at about 75 before peaking at 100 in 1999, then falling to about 90 in 2001. The Asian Pacific Islander rate starts at about 10, peaks at about 26 in 1999 before dipping in 2000 to 15, then rising to 20 in 2001. The American Indian/Native Alaskan rate begins at about 5, rises gently to about 15 in 1999, then declines slowly to about 10 in 2001.

SOURCE: AnyState Department of Health, December 2001


Example 2. Characteristics of Injection Drug Use AIDS Cases in MetroCity EMA,
January - December 2001 (N=327)

Characteristic
# of IDU AIDS Cases
% of IDU AIDS Cases
Total AIDS Cases in Each Group
IDU as % of Total Cases in Each Group
Gender
Male
226
69.1
2230
10.1
Female
101
30.9
213
47.4
Race/Ethnicity
White
139
42.5
1756
7.9
African American
143
43.7
412
34.7
Hispanic/Latino
41
12.5
229
17.9
Other*
4
0.3
46
10.2
Age Group
13-24
10
3.6
82
12.1
25-29
34
10.4
342
9.9
30-49
262
80.1
1726
15.1
50 and over
21
6.4
269
7.8
*Other: Asian/Pacific Islander, Native American, Other, Not reported

SOURCE: AnyState Department of Health, July 2002


Example 3. HIV Seroprevalence Survey of Young Gay/Bisexual Men (N=436),
This County, 2001

Characteristic
Number Tested
Number HIC Positive
HIV Seroprevalence (%)
Race/Ethnicity
White
287
15
5.2%
African American
58
10
17.2%
Hispanic/Latino
50
0
0%
Asian/Pacific Islander
10
0
0%
Other*
31
4
12.9%
Age Group
13-19
94
0
0%
20-22
154
9
5.8%
23-24
188
20
10.6%
Education Completed
Less than high school
77
5
6.5%
High school or equivalent
116
9
7.8%
More than high school
243
15
6.4%
Living Arrangement
Live alone
67
6
9%
With lover, partner, or friends
222
9
5.6%
With parents/relatives
126
10
7.9%
Homeless
16
3
18.8%
*Other: Native American, Other, Not Reported

SOURCE: ThisCounty Health Department, February 2002

Other Data Needs and Issues  TOP

The planning body should ensure that the epi profile addresses two additional needs. It should provide estimates of HIV prevalence, and it should include trend data so you can plan based on an understanding of how the epidemic is changing in your service area.

If the State does not report HIV, you will need estimates of HIV prevalence. At a minimum, the estimates provided by CDC, which are based on ratios of HIV prevalence in similar States, should be used. The epi profile should add and refine estimates for the entire service area or for particular populations or geographic areas where feasible. You may want to use surveys or other needs assessment tools to supplement or refine the HIV prevalence data available in the epi profile.

Trend analysis in AIDS and HIV prevalence. Analysis of the most recent HIV/AIDS data should answer the following questions related to trends:

  • Are the AIDS cases and/or the HIV cases generally increasing or decreasing in the service area? In what populations or geographic areas are the rates increasing the fastest?
  • How do the trends in AIDS cases compare to those in HIV cases? Are there differences by population or geographic area?
  • How do these trends relate to the sociodemographic characteristics of the service area?
  • Overall, how are the AIDS and HIV cases in the service area characterized? Where and in what populations are they most likely to be found?

Information to Look for in an Epi Profile  TOP

The profile should be organized in a way that is most useful to its primary users, such as the planning body. Planning body members who are leading the needs assessment effort should review the report to make sure that the information requested and needed is provided, before distributing it to the entire membership and other interested parties. The typical major sections of an HIV/AIDS epi profile are summarized below. This listing is only a starting point, and can be adapted to suit the needs of different titles and locales. (For more specific examples and information on formats of an epi profile refer to the Integrated Guidelines for Developing Epidemiologic Profiles on the HRSA/HAB website.)

  • Executive Summary. Summarizes highlights and conclusions of the epi profile.
  • Introduction and Background. Explains the purpose of the needs assessment process, provides a brief history of the epidemic in your service area, and describes the goals and objectives of the body who commissioned the profile.
  • Methodology. Describes in general what data were collected or obtained, how they were analyzed, and the limitations and strengths of the data and the profile as a whole. Describes who was involved in preparing the profile.
  • Sociodemographics. Describes the service area in terms of geography and population.
    • Map of the service area
    • Population of service area by geographic area and demographic characteristic
    • Change in population size and composition over time
  • AIDS Cases in the Service Area. Describes the characteristics of AIDS cases in the service area
    • AIDS incidence
    • AIDS prevalence
    • Map of AIDS cases by geographic area
    • AIDS cases by exposure category
    • AIDS cases by year of diagnosis
    • Opportunistic illnesses in persons living with AIDS
    • AIDS cases in specific populations (describes the characteristics of AIDS cases in the service area by populations of interest; these might include some or all of the categories listed below):
      1. Racial/ethnic minorities (each considered in a separate section)
      2. White gay and bisexual men
      3. Gay and bisexual men of color
      4. Injection drug users
      5. Women
      6. Infants and Children
      7. Adolescents
      8. Recently diagnosed individuals
      9. Incarcerated populations
    • Limitations of data
  • HIV Cases in the Service Area. Describes the characteristics of HIV cases in the service area overall and by population of interest:
    • HIV prevalence (including method of estimation, if used)
    • Map of HIV cases by geographic area
    • HIV data by population of interest through HIV serologic studies and HIV counseling and testing site surveillance
    • Limitations of data
  • Trends and Projections. Analyzes changes in the epidemic over time and makes projections of future HIV caseload for three to five years.
  • Conclusions. Summarizes the profile's data, trends, and projections, and their implications for needs assessment and planning.
  • Appendices. Provides supporting documentation, such as:
    • Tables, charts, graphs, and/or maps that supplement the information provided in the profile
    • References, listing major sources of information, and
    • Other supplemental information.



References  TOP

HRSA Publications

Suggested Guidelines for Developing Integrated Epidemiologic Profiles for HIV Prevention Community Planning and Ryan White CARE Act Needs Assessment. CDC and HRSA/HAB. Available summer 2002. See the HAB website.

Using Data to Assess HIV/AIDS Service Needs is Report #2 of the HAB Evaluation monograph series. Order it from the HRSA Information Center or download it from the HAB website.

CDC Publications

To obtain CDC publications, see the CDC website or contact the CDC National Prevention Information Network (NPIN) at their website, by e-mail, or telephone at (800) 458-5231 Monday through Friday from 9:00 a.m. to 6:00 p.m. Eastern time.

The HIV/AIDS Surveillance Report can be downloaded from CDC's website.

 


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