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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 startbut only the startof 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.
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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.
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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 definitionpre-1987,
1987, and 1993expanded 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 populationor
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).
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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:
- CDC
receives findings from an evaluation that demonstrates acceptable
performance under CDC guidelines, and
- 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
usersand others in the communityto 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 categorysuch
as teenagers or childbearing womenor 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 proportionsometimes one-third or moreof
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 bodyto 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 audienceto ensure appropriate, user friendly
language for profile users, including the planning body.
- Knowledge
of the various CARE Act titles and their epi data needseven
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 needsto ensure that the profile includes
information useful for providers.
- Knowledge
of policy issuessince 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 plannedwhat 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 profilewhat 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

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.
|