HIV/AIDS Risk Factor Reporting Alarmingly Low 

CDC HIV 

Transmission 

Categories 

• M en wh o h ave S ex with M en 

(M SM ) 

• Injection D ru g U se (ID U ), 

wh ich inclu d es injecting illicit or 

non-p rescrib ed d ru gs 

• M S M + ID U , which inclu d es 

m en wh o h ave sex with m en 

and also inject d ru gs 

• H em op h ilia/coagu lation 

d isord er 

• H eterosexu al contact with a 

h igh -risk or infected ind ivid u al 

• B lood , b lood com p onent, or 

transp lant recip ient 

• O th er not rep orted /id entified 

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 worse. 

“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.” 

Why 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 person.” 

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 

with HIV infection, or was otherwise at 

high risk for HIV. The many facets of 

information compiled by healthcare 

professionals are boiled down into the 

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 track them. 

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 are infected 

through 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 of 

HIV. 

• Targeting risk-reduction 

interventions. When CDC and 

other organizations plan riskreduction 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 
HIV/AIDS

HIV/AIDS Risk Factor Reporting Alarmingly Low (continued) 

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. 

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 provider settings. 

• 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, selfassessment 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 the 

most.” 

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. 

• make 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

F or fu rth er inform ation, p lease contact you r state h ealth d ep artm ent or D r. M cD avid at km cd avid @ cd c.gov.