Of the approximately 33,000 new HIV/AIDS diagnoses reported to the National
HIV/AIDS Reporting System in 2003, over one-third were reported with no
identified risk factor, according to a new report by the Centers for Disease
Control and Prevention (CDC).
Without accurate risk factor documentation and reporting (which are part
of routine case reporting), state and federal funding for HIV prevention
activities and AIDS services may not reach the populations who are most
in need. Additionally, surveillance tracking of the HIV/AIDS epidemic requires
accurate risk factor information to detect changes in the epidemic. According
to CDC, the problem is already severe, but there are signs it is getting
“The percent of cases reported without risk factors has been increasing
annually,” says Kathleen McDavid, PhD, MPH, an epidemiologist with
CDC’s HIV Incidence and Case Surveillance Branch. “From 1994
to 2003, the percent of HIV cases reported to the CDC without risk factor
information has doubled to 40% and the percent of AIDS cases reported without
risk factors went from 15% to 27%. Further, some of the cases among groups
who are less likely to be reported with risk factors are some of the groups
who may need services the most, including African Americans.”
is reporting risk factors important?
Risk factor reporting is the beginning of a process that culminates with
CDC’s surveillance information on HIV and AIDS.
“Once the individual risk factors are collected, they are sent,
without patient identifiers, through the state surveillance department
to CDC. At the state level and the federal level they are assigned the
most probable mode of transmission,” says Dr. McDavid. “Even
though an individual can have multiple risk factors for HIV infection,
he or she will be classified into only one transmission category. It is
this category that is the most likely mode of transmission for a particular
The risk factor reporting form that healthcare providers
use may look very different than the transmission categories reported
by CDC. For example,
the risk factor questions aim to cover all possibilities. It is not enough
to know that a woman newly diagnosed with HIV has had multiple male sex
partners. CDC needs to know if one or more of these sex partners was
a bisexual male, used injection drugs, may already have been documented
HIV infection, or was otherwise at high risk for HIV. The many facets
of information compiled by healthcare professionals are boiled down into
most probable transmission category, that is, the most likely way the
patient may have been exposed to HIV.
So even though transmission categories
appear in CDC surveillance reports, it is the risk factors that are the
seminal pieces of information. Transmission
categories are used for various purposes, including:
- Allocating resources. Federal and state governments, non-profit
organizations, and private foundations distribute hundreds of millions
of dollars each year based on the distribution of transmission categories
among cases of HIV infection.
- Monitoring trends. Risk factor data are
integral in monitoring trends in the transmission of HIV, as seen in
CDC’s annual surveillance
reports. Trends change over time, making it important to accurately
For example, in the early years of the epidemic, most women who received
a diagnosis of HIV and AIDS were infected through injection drug
use. According to recent surveillance reports, currently, more women
heterosexual contact than through injection drug use.
- Planning prevention
programs. Knowing which risk factor groups are most affected in different
populations is critical to all of the programs,
prevention efforts, and
activities undertaken by the many organizations concerned with HIV and
AIDS. If this information is not correctly and completely collected, organizations
will not accurately distribute resources or create programs to prevent the spread
- Targeting risk-reduction interventions. When CDC and other organizations
plan risk-reduction interventions or prevention programs, it is vital to know
which risk factors are currently driving the epidemic.
- Evaluating various
HIV/AIDS programs. Again, accurate risk factor reporting will allow CDC and
other organizations to evaluate the effects, e.g., decreasing
the number of new infections or increasing access to care, their programs
are having on various risk factor groups.
- Identifying new or unusual cases
of HIV infection. Accurate risk factor reporting can signal the emergence
of new at-risk groups.
CDC HIV Transmission Categories
- Men who have Sex with Men (MSM)
- Injection Drug Use (IDU), which includes injecting illicit
or non-prescribed drugs
- MSM+ IDU, which includes men who have sex with men and
also inject drugs
- Hemophilia/coagulation disorder
- Heterosexual contact with a high-risk or infected individual
blood component, or transplant recipient
- Other not reported/identified
What are the reasons that risk factors are not reported?
“There are many reasons why risk factors don’t get reported,
ranging from not having enough time with patients to confidentiality
concerns,” says Dr. McDavid. Other reasons include:
- Fatigue in case reporting.
- An increase in the turnover of surveillance
or provider staff.
- Reduced resources in both health departments and
- Inadequate training and retraining of health department
staff and providers who take sex and drug risk factor histories from
patients and clients.
- Lack of comfort in asking about sexual behavior
or drug use.
- The lack of standardized terminology at each step of the
process to describe potential routes of exposure and the most likely
route of exposure.
- Transition of the source of reports from hospitals
to laboratories, outpatient settings, and other places where documentation
is less extensive.
What is CDC doing?
To better serve its healthcare partners across the country, in January
2004, CDC and state surveillance staffs formed a workgroup to address
the concerns. The workgroup revised the surveillance guidelines, including
the training guidance, and developed educational materials for providers.
These materials, which are expected to be available in 2005, will provide
definitions of risk factors, self-assessment tools, and suggestions for
discussing risk factors with patients.
Additionally, the surveillance data are some of the most securely collected
in the United States. States and CDC adhere to strong national data security
and confidentiality guidelines which are reviewed and updated annually.
What can you do?
“Healthcare providers are in a unique situation,” notes
Dr. McDavid. “They are on the frontline of HIV and AIDS patient
care and are our best opportunity to get this risk factor information.
They may also be on the receiving end of funds directed to HIV and AIDS
services. Therefore, they may receive the benefits of accurate reporting
through monies and services targeted to the populations who need them
As a healthcare provider, you can
- work with your state and local health departments to ensure
that you are completely and accurately assessing patient risk factors
and filling out forms.
- request materials and tools from your local
health department to assist you to better document all known risk factors.
sure your colleagues are properly trained in assessing and documenting
all known HIV risk factors according to national and local definitions.
If you don’t report risk factor information, you can work with
your local health department who can confidentially obtain the information
from patient records.
“However you choose to help increase the documenting and reporting
of risk factors, your efforts are appreciated and important,” says
Dr. McDavid. “They will pay off in more accurate surveillance information,
better targeting of lifesaving prevention programs, and the assurance
that resources are going to the populations who need them most.”
Risk Factor Reporting Section of CDC Case Report Form
For further information, please contact your state health department
or Dr. McDavid at firstname.lastname@example.org.