United States General Accounting Office

GAO Testimony

Before the Subcommittee on Human Resources,

Committee on Government Reform and Oversight, House

of Representatives

For Release on Delivery

Expected at

10:00 a.m., EDT

Thursday,

May 14, 1998

GULF WAR VETERANS

Limitations of Available

Data for Accurately

Determining the Incidence

of Tumors

Statement of Kwai-Cheung Chan, Director of Special

Studies and Evaluations, National Security and

International Affairs Division

GAO/T-NSIAD-98-186

Mr. Chairman and Members of the Subcommittee:

I am pleased to be here today to discuss the results of our recently

completed report, at the Subcommittee’s request, on the (1) reliability and

utility of existing data for determining the incidence of tumors among Gulf

War veterans and (2) uses of the data by the Departments of Defense (DOD)

and Veterans Affairs (VA) to monitor tumors in the Gulf War veteran

population.1

 Our review focused on five types of data sources: mortality

data, DOD and VA hospital and outpatient medical records, DOD and VA Gulf

War health registries, survey results, and national and state cancer

registries. It is important to point out that most of the data sources we

reviewed were not designed for medical research purposes but rather for

other uses, such as the administration of records or veteran outreach.

Nevertheless, researchers have used some of these data sources to assess

the nature and extent of Gulf War illnesses. Our intent was to see if the

data could be used to determine the frequency of tumors and to examine

the appropriateness of using the data in other applications.

I will first summarize our study results. Then, I will present some

preliminary observations on subsequent data analysis, requested by the

Subcommittee, to assess the numbers and types of tumors that are

reported for Gulf War veterans in available VA health and benefits disability

databases. Following this, I will provide more details on our findings.

Results in Brief Based on our completed study, we found that none of the data sources

providing information on the health of Gulf War veterans can be used to

reliably estimate the incidence of tumors or other illnesses. Existing

government data systems are generally limited by poor coverage of the

Gulf War veteran population and problems of accuracy and completeness.

As a result, it is not known how many Gulf War veterans have tumors or

whether they have a higher incidence of them than other veterans. DOD and

VA have begun efforts to improve these data systems but have not

developed the capability to effectively link information from different

sources to assess tumors or other illnesses among Gulf War veterans. DOD

and VA also recently funded a few research studies that should provide

additional information on tumor cases in the future. However, these

studies are not the product of a systematic effort to study the incidence of

tumors, and limitations to the studies will prevent them from providing

reliable and valid estimates of Gulf War veterans’ tumors.

1

Gulf War Veterans: Incidence of Tumors Cannot Be Reliably Determined From Available Data

(GAO/NSIAD-98-89, Mar. 3, 1998).

Page 1 GAO/T-NSIAD-98-186 Gulf War Veterans
Following completion of our report, we conducted additional work to

assess the feasibility of linking data from different sources and

determining the number of tumors among Gulf War veterans. Based on our

preliminary analysis of only VA health and disability benefits databases, we

identified about 14,700 Gulf War veterans with tumors. Although we have

not conducted appropriate analyses to determine whether the total we

computed translates into a higher or lower rate of cases as compared to

other groups of veterans, it is a larger number of cases than that reported

in other studies of Gulf War veterans. These data reflect cases that are

reported in VA data systems and do not include Gulf War veterans who are

still on active duty or those who use non-VA medical facilities. While we

were able to merge VA data at an aggregate level to estimate the total

number of tumors, detailed analysis involving the combination of cases by

type of tumor will be more difficult to conduct because of different

diagnostic coding systems used in the different data systems.

GAO’s Review of

Existing Data Sources

to Determine

Incidence of Tumors

Among Gulf War

Veterans

Background Although casualties were relatively light during the Gulf War deployment,

thousands of veterans have come forward complaining of various

illnesses, including cancer, in the years following the conflict. During the

Gulf War, American troops may have been exposed to several potentially

hazardous substances. These include chemical warfare agents, depleted

uranium from munitions, smoke from oil-well fires, infectious diseases,

pesticides, petroleum fuels, and vaccines. Some of these substances have

previously been associated with different types of cancer through animal

laboratory studies and other epidemiological research investigations. For

example, combustion products from petroleum include polyaromatic

hydrocarbons, benzene, and carbon disulfide, some of which are known to

cause lung cancer when inhaled. Exposure to certain pesticides has also

been linked to lymphatic and lung cancers. In addition, exposure to

radioactive particles has been tied to higher rates of respiratory and other

Page 2 GAO/T-NSIAD-98-186 Gulf War Veterans
cancers. Information on exposures that took place during the Gulf War,

however, has been either incomplete or nonexistent due to the lack of

record-keeping and measurement before, during, and after the deployment

of troops; loss of key records; poor recall by veterans; and other factors.

The development of cancer is usually characterized by a latency period of

many years from initial exposure to a harmful agent to a definitive medical

diagnosis. Depending on the nature and extent of the exposure, type of

cancer, and characteristics of different individuals, the latency period may

be as long as 30 years or more. The most common types of cancers have a

latency period of 15 years or more, but in certain situations cancer can

develop more quickly (e.g., in cases where the immune system is

compromised).

Given that there is a lengthy latency period for most tumors, it may be too

soon to detect any increase in tumors among Gulf War veterans. Also,

since cancer is a relatively rare event,2

 large population groups may need

to be observed over several years to assess incidence and determine

whether it has changed over time. Furthermore, without credible exposure

information, it is hard to form specific hypotheses about what kinds of

tumors might grow in what individuals. Although such constraints exist, it

is nonetheless important to begin monitoring Gulf War veterans to assess

whether they are suffering from an increase in tumors so that appropriate

health care and treatment can be provided where needed. With many types

of tumors, early detection is important to more effective treatment

outcomes.

Mortality Data One source for estimating the incidence of cancer among Gulf War

veterans uses mortality as an indicator. The VA maintains a large

administrative database, the Beneficiary Identification and Records

Locator Subsystem (BIRLS), which can be used to track the mortality of

veterans. The system’s strength is its broad coverage of the veteran

population (estimated to be 80 to 90 percent of the deceased veteran

population, according to VA and other researchers) and its

cost-effectiveness for ascertaining vital status and causes of death.

However, mortality is only a proxy measure for incidence because not all

cancers result in death, and those that do may take several years to show

up. Mortality data provide good estimates of incidence for cancers that

2

The average age-adjusted incidence rate for all types of cancer combined was 400 cases per 100,000

population in the United States in 1990-91 (National Cancer Institute, Cancer Rates and Risks, 1996, p.

17). Among the age group that served in the Gulf War, incidence is lower (fewer than 100 cases per

100,000 population for the ages 15-44).

Page 3 GAO/T-NSIAD-98-186 Gulf War Veterans
have a high mortality rate (such as lung and liver cancers), but they are

less useful for cancers with lower rates of mortality (such as prostate and

breast cancers). Because of these limitations, mortality data will

systematically underreport overall cancer incidence.

In one published study using data from BIRLS, the VA assessed whether

mortality from a range of diseases (including cancer) was different for

Gulf War veterans compared with a sample of veterans who were not

deployed to the Persian Gulf.3

 The study, which covered deaths occurring

in a 2-year period after the war, found that there was a small but

significant excess of deaths among Gulf War veterans compared with

nondeployed veterans and that the excess was due mainly to accidents

and not disease. Of the 1,765 Gulf War veterans who died during the study

period, 119 died from cancer, showing no statistically significant

difference compared with the cancer death rate among nondeployed

veterans. One key limitation of this portion of the study is the relatively

short time period for assessing veterans that died from cancer.

Another limitation of the study, which the authors acknowledged, is

whether the study’s comparison groups were appropriately matched.

Military personnel who were ill or recovering from an illness would not

have been deployed to the Gulf War area. However, these personnel were

included in the comparison group of nondeployed veterans. This meant

that the comparison group may have been less healthy than the deployed

veterans group. The extent to which a higher rate of prior illnesses among

nondeployed veterans resulted in a different rate of mortality (or cancer

mortality in particular) and thus biased the study findings is unknown.

VA is now updating the study, extending the period to be studied through

1995, and the results should be published later this year.

DOD and VA Medical

Records

Both DOD and VA maintain an automated database containing detailed

medical and demographic information on patients discharged from their

respective hospitals. Both data systems contain millions of records, but

they do not represent the entire active duty and veteran population. DOD’s

data include most hospitalizations of active duty personnel, in large part

because DOD medical care is free and readily available to active duty

personnel; however, some veterans’ groups have reported that Gulf War

veterans are seeking medical care outside DOD. VA also has an extensive

3

Kang, H. K., and Bullman, T. A., “Mortality Among U.S. Veterans of the Persian Gulf War,” New

England Journal of Medicine, vol. 335 (1996), pp. 1498-1504.

Page 4 GAO/T-NSIAD-98-186 Gulf War Veterans
network of medical centers across the country, but the overwhelming

majority of veterans who have separated from the military use non-VA

hospitals and medical facilities. A survey conducted by VA in the late 1980s,

for example, estimated that only about 20 percent of veterans had ever

used a VA hospital.

Another weakness of these data systems has been the lack of coverage of

outpatient medical care. Coverage of outpatient care is important because

more patients have been diagnosed and treated for many types of tumors

in outpatient facilities in recent years. DOD currently has no centralized

reporting system for its outpatient facilities, although an automated

system is under development. In October 1996, VA established an

automated system that includes diagnostic information, but consistent and

reliable outpatient reporting may not be available for several years.

In addition to limitations in terms of population coverage, there are also

issues regarding the accuracy and completeness of hospitalization data

reporting. Miscoding of diagnoses has been problematic in the past, as

shown by VA researchers in previous assessments of certain types of

cancer among Vietnam veterans. For example, in one case-control study of

over 400 Vietnam veterans identified in VA’s hospitalization database as

having malignant tumors of connective and other soft tissue, close to

40 percent of the records were found to be miscoded or misclassified

when hospital pathology reports were subsequently collected and

independently reviewed by an expert pathologist.4

In a large DOD-funded study published in 1997, the hospitalization

experiences of all active duty Gulf War veterans during the period 1991-93

were compared with a sample of other active duty military personnel who

were not deployed to the Gulf region.5

 Overall, the authors found there

was no excess in hospitalizations among Gulf War veterans compared with

other military personnel. However, Gulf War veterans had higher rates of

hospitalizations in certain years for mental disorders, diseases of the

blood, and diseases of the genitourinary system. Hospitalization rates for

tumor cases were also higher for Gulf War veterans, but the differences

were not statistically significant and most involved benign conditions.

4

Kang, H.K. et al, “Soft Tissue Sarcomas and Military Service in Vietnam: A Case Comparison Group

Analysis of Hospital Patients,” Journal of Occupational Medicine, vol. 28 (1986), pp. 1215-1218.

5

Gray, G.C. et al, “The Postwar Hospitalization Experience of U.S. Veterans of the Persian Gulf War,”

New England Journal of Medicine, vol. 335 (1996) pp. 1505-13.

Page 5 GAO/T-NSIAD-98-186 Gulf War Veterans
A major strength of this study is its large size and statistical power to

detect differences in rates of hospitalizations between deployed and

nondeployed military personnel. However, a key limitation of the study,

which influences the interpretation of the results, is that it excluded

hospitalizations of Gulf War veterans who separated from the services and

hospitalizations of active duty personnel who used non-DOD hospitals.

Another important limitation of the study is that the time frame was far

too short for detecting any diseases resulting from possible exposures

during the war, such as tumors, which have lengthy latency periods.

The same researchers have underway a related follow-up study to examine

hospitalizations of Gulf War veterans in military and nonmilitary hospitals

in California. Although the study results cannot be generalized to the

entire Gulf War population, it is large and one of the first to systematically

combine military and nonmilitary hospitalizations. The study period is

longer (1991-95); however, the problem of detecting diseases with a

lengthy latency period is still an issue, and outpatient data will be

excluded.

Gulf War Health Registries Both DOD and VA have established separate programs that provide medical

examinations and diagnostic services, free of charge, to Gulf War veterans.

The VA began its Persian Gulf Health Registry Examination Program in

1992, and DOD started its Comprehensive Clinical Evaluation Program in

1994. An existing health problem is not necessary for participation in the

programs; any Gulf War veteran with health questions or concerns is

eligible to enroll on a voluntary basis. Close to 100,000 veterans have

completed either the VA or DOD registry examination. Of that number, less

than 1 percent of veterans have received a primary diagnosis of a

malignant or benign tumor.

The suitability of the registries for assessing cancer incidence is extremely

limited. As designed, the registries are not intended to be used to

determine the frequency and causes of illnesses among the general Gulf

War veteran population, but rather to diagnose and treat voluntary

participants’ symptoms. Because the participants were not selected based

on a random sample, there is no way to know whether their health

problems are similar to those of the general population of Gulf War

veterans. In addition, because there is no ready comparison or control

group for the registry participants, the significance of the data reported

cannot be determined. A further limitation of the registry data is that they

capture information about the health of veterans only at one point in time.

Page 6 GAO/T-NSIAD-98-186 Gulf War Veterans
Thus, if a veteran develops cancer or another illness later on, the registry

data will not reflect this.

Data quality concerns also have been raised in a previous review of the VA

registry by the Institute of Medicine. The Institute found, for example, that

there was a considerable delay between the collection of the examination

data and their entry into the registry database.6

 We also found that VA

medical facilities have not reported registry examination information

consistently. It appears that a large number of case records submitted for

input into the registry database have been returned to the medical

facilities due to coding errors. At the same time, effective quality

assurance procedures have not been in place to ensure that rejected

records are corrected and reentered into the database. Thus, data

coverage even for those who participate in the registries may be

incomplete.

Survey Data Another data approach involves developing information about the

incidence of tumors using survey methods such as a questionnaire

administered to a sample of veterans. Significant advantages to using the

survey approach include the ability to draw a random sample of Gulf War

veterans and an appropriate comparison group. A survey also permits

researchers to gather other information, such as information about

exposures and family history, that might shed light on the causes of a

disease. Limitations of this approach include the possibility of response

bias (individuals who complete the survey not being representative of the

sample as a whole) and the subjectivity of self-assessments. The extent to

which response bias is a factor, however, can be estimated through a

special survey of nonrespondents, which may be conducted by telephone

or personal interviews. The results of the nonrespondent survey can then

be compared to the results of the principal survey to gauge the degree to

which respondents are typical of the overall sample. Subjectivity of the

assessments of cancer or other illnesses can also be gauged to a degree

through an independent medical review of a subsample of respondents. A

further concern in implementing large population surveys is that they tend

to be much more costly than the other approaches. In addition, the type

and number of questions must be restricted, or the response rate will be

low.

6

Institute of Medicine, Health Consequences of Service During the Persian Gulf War: Initial Findings

and Recommendations for Immediate Action, 1995.

Page 7 GAO/T-NSIAD-98-186 Gulf War Veterans
VA is currently using a survey approach to study the general health status

of Gulf War veterans. The National Health Survey of Persian Gulf War Era

Veterans was mailed to a random sample of 15,000 Gulf War and 15,000

nondeployed veterans. The questionnaire includes a checklist of illnesses,

including skin cancer and “any other cancer,” and a checklist of symptoms

such as “coughing” and “skin rashes.” In addition to questions about

current health status, respondents were also asked to report about their

exposure to a list of agents, including nerve gas, depleted uranium, and

smoke from oil-well fires, while they were in the Gulf War region. The

overall response rate to the survey has been relatively low (57 percent). VA

is conducting a survey of nonrespondents in order to evaluate

nonresponse bias. VA is also addressing the limitation imposed by

subjective assessments through an independent review of medical records

and the “comprehensive physical examination” of a subsample of 2,000

respondents (1,000 in each of the Gulf War veteran and nondeployed

veterans groups). The sample size of the VA survey, however, may be too

small to identify an elevated incidence of most cancers. VA has

acknowledged this possible limitation.

A population-based survey to assess the prevalence of self-reported

symptoms and illnesses among Gulf War veterans was also conducted in

Iowa from September 1995 through May 1996.7

 By telephone, a random

sample of about 3,700 Gulf War and non-Gulf War veterans from Iowa

were surveyed. Overall, the study found that Gulf War veterans reported a

significantly higher prevalence of a wide range of medical and psychiatric

conditions compared with military personnel who were not deployed to

the Gulf War. The primary conditions on which differences were reported

included depression, posttraumatic stress syndrome, chronic fatigue,

cognitive dysfunction, and respiratory diseases. The rate of cancer

reported among these Gulf War veterans was generally low (an estimated

rate of about 1 per 100 subjects), but it was slightly higher than that of the

comparison group.

Cancer Registries Another source for estimating the incidence of cancer is population-based

cancer registries that compile standardized reports of cancer cases

directly from medical facilities (typically hospitals) on an ongoing basis. A

national cancer registry (the Surveillance, Epidemiology, and End Results

(SEER)) established by the National Cancer Institute reports incidence

rates for the general population and key subgroups but cannot be used to

7

The Iowa Persian Gulf Study Group, “Self-Reported Illness and Health Status Among Gulf War

Veterans,” Journal of the American Medical Association, 277 (1997), pp. 238-245.

Page 8 GAO/T-NSIAD-98-186 Gulf War Veterans
identify the Gulf War population. Many available state registries could be

used to identify Gulf War veterans, but the registries vary in terms of data

quality and reporting consistency and coverage. For example, many states

require only hospitals to report on cancers and do not capture cases

diagnosed by private physicians, laboratories, and health maintenance

organizations.

The VA has provided initial funding for a study to assess cancer incidence

among Gulf War veterans in New England, based on cases reported in the

state cancer registries in the region. Cases will be identified by matching

the registries against a roster of all veterans who were deployed to the

Gulf War conflict. The first phase of the study has been funded to develop

a framework for merging data from the individual state registries. The next

phase of the study, to begin by 1999, will involve an assessment of cancer

incidence and mortality. Although this study is several years away from

completion, it should provide a useful means for obtaining information

about cancer incidence. Some of the strengths of the study are that it will

use existing data systems, identify and assess a large cohort of Gulf War

veterans, and can be readily updated over time. One key limitation of the

study, however, is that the results cannot be generalized to the entire Gulf

War population, since only the New England states will be included. Also,

there is likely to be an underreporting of cases in the state registries,

particularly cases diagnosed outside of the hospital setting and cases from

border areas that may be reported in other state registries outside the New

England area.

Conclusions and

Recommendation

No direct link has been established between potential exposures that

occurred during the Gulf War and the development of tumors among

veterans. Yet, concerns have been raised because many of the exposure

agents in question have previously been associated with certain cancers.

This has led to interest in determining whether the cancer incidence rate

among Gulf War veterans is higher than the rates within other appropriate

comparison groups. If there is a higher rate that indicates an emerging

health problem, then outreach efforts could be conducted to target

appropriate diagnosis and treatment to those potentially at risk. The

existing data and research applications we reviewed, however, provide

very limited information about the incidence of tumors or other illnesses.

To more effectively evaluate the incidence of tumors and other Gulf War

illnesses over time, we recommended in our report that the Secretaries of

Defense and Veterans Affairs improve existing monitoring capabilities.

Page 9 GAO/T-NSIAD-98-186 Gulf War Veterans
Attention should be directed toward strengthening the utility of existing

data systems and particularly in developing cost-effective ways to make

data systems more compatible with one another so that information from

different sources can be linked. In addition, steps should be taken to

address the data quality concerns we identified. While we believe such

improvements can lead to more effective monitoring capabilities, the

existing data systems are likely to be insufficient to answer the question

about cancer incidence or other illnesses among Gulf War veterans.

Therefore, further research efforts will be needed to supplement the

available data systems. For example, little is known about the health

status of veterans who receive medical care from sources other than DOD

and VA facilities. Practical approaches should be developed to determine

whether health problems among these veterans may be emerging.

In response to our report, DOD and VA concurred with our overall findings

regarding the inadequacies of existing data systems for assessing the

incidence of tumors among Gulf War veterans and our recommendation to

improve monitoring capabilities. They emphasized, however, that they

have several initiatives underway to strengthen the reporting of health

information and the linkage of data from different sources. While we

recognize that these efforts will lead to some improvements, we are

concerned that the available data sources will continue to be insufficient

to assess Gulf War illnesses such as tumors.

GAO’s Preliminary

Analysis of

Information in VA

Databases on Tumors

Among Gulf War

Veterans

Following completion of our report, we conducted further work, at the

Subcommittee’s request, to determine the nature and extent of tumors

among Gulf War veterans that are included in DOD and VA data systems and

demonstrate the feasibility of linking data from different sources. As a first

step, we analyzed data from VA’s disability benefits and health care

reporting systems. Specifically, we requested information on Gulf War

veterans who from July 31, 1991 to March 31, 1998, had filed a disability

claim based on the presence of one or more malignant or benign tumors or

were diagnosed with a tumor at a VA hospital or outpatient medical facility.

We obtained cases from five databases maintained by VA: (1) Persian Gulf

Health Registry, (2) Patient Treatment File, (3) Outpatient,

(4) Compensation and Pension Masterfile, and (5) Beneficiary

Identification and Records Locator Subsystem.8

 As shown in table 1 in

appendix I, these databases represent different subpopulations of Gulf

War veterans, periods of coverage, and levels of diagnostic information.

8

The BIRLS data cover denied and inactive disability claims. The data we obtained from VA, however,

do not indicate the reasons claims were denied (e.g., due to lack of service connection, insufficient

medical support). As a result, these cases should be viewed as potential tumor cases.

Page 10 GAO/T-NSIAD-98-186 Gulf War Veterans
For example, the Compensation and Pension Masterfile includes up to 6

different diagnoses for an individual, whereas, the Outpatient database

records as many as 15 diagnoses.

The data from these reporting systems do not cover Gulf War veterans

who remain on active military duty or who have separated from the

services and receive non-VA disability benefits or health care. As a result, a

significant portion of the Gulf War population will not be included in these

data.9

 In addition, VA omitted from the disability data files they provided to

us a number of codes for tumors, including those for leukemia, Hodgkin’s

disease, non-Hodgkin’s lymphoma, and benign tumors of the gynecological

system and mammary glands. Consequently, there is some degree of

underreporting in the VA data. Nonetheless, these VA data have not been

previously combined to show a larger picture of health conditions, such as

tumors, among Gulf War veterans. We have completed some preliminary

analysis of the VA data at an aggregate level, which are presented in tables

2-5 (see appendix I). A more detailed analysis, which involves combining

cases with similar tumor types, will be more difficult to complete because

different diagnostic coding systems are used for the health and disability

benefits data.10 VA has not developed a linkage between these different

coding systems.

As shown in table 2, a total of 16,226 cases of tumors were reported for

Gulf War veterans across all five databases; the vast majority of the tumors

were benign. When we removed duplicate cases by matching social

security numbers, the total is reduced to 14,676 veterans with tumors. The

fact that a relatively small amount of records (about 10 percent) are

duplicated reinforces the need to use multiple data sources to obtain

greater coverage of the veteran population. Use of only selective data may

lead to an undercount of cases and incomplete information about the

health condition of veterans. Although we do not know whether the total

we computed is higher or lower than other appropriate comparison

groups, it is a larger number of cases than that reported in other studies of

Gulf War veterans. In May 1996, for example, VA provided some

information, at the request of the Subcommittee, on the number and types

of tumors among Gulf War veterans. In estimating the total number of

9

According to VA, of the 697,000 servicemembers who participated in the Gulf War conflict, about

568,000 separated from the services, while 128,000 remain on active duty. The majority of veterans

separated from the services do not use VA hospitals and medical facilities.

10The International Classification of Diseases, Version 9 (ICD-9), which is used in VA’s Persian Gulf

Health Registry, Patient Treatment File, and Outpatient data systems, is ordered by groupings of

diseases; VA’s disability coding, which is used in the Compensation and Pension and BIRLS data

systems, is structured generally by the part of the body affected by the disability or disease.

Page 11 GAO/T-NSIAD-98-186 Gulf War Veterans
veterans with tumors, VA used information from three databases: Persian

Gulf Health Registry, Patient Treatment File, and Compensation and

Pension Masterfile. The total number of tumor cases reported by VA was

6,397 as compared to the 14,676 cases we identified. Our total is much

higher because of 2 additional years of data and the inclusion of the BIRLS

and outpatient data.

As shown in table 3, a large majority of the Gulf War veterans with tumors

also tend to have other diagnosed illnesses as well. This is in line with

other published studies of Gulf War illnesses that have noted multiple

symptoms and illnesses among the Gulf War veteran population. Further

details on the different types of tumors reported from each database are

also presented in tables 4-5. Here, it is clear that a broad range of different

tumors has been reported for these veterans.

Mr. Chairman, this concludes our prepared remarks. We will be happy to

answer any questions you or other members of the Subcommittee may

have on our completed and ongoing work.

For more information about this testimony, please call John Oppenheim,

Assistant Director, at 202-512-3111. Other major contributors include

David G. Bernet and Julia Kennon.

Page 12 GAO/T-NSIAD-98-186 Gulf War Veterans
Page 13 GAO/T-NSIAD-98-186 Gulf War Veterans
Appendix I 

Table 1: Characteristics of VA Databases Used to Assess Information on Tumors Among Gulf War Veterans

VA databases Description Relevant time period covered Diagnostic information

Persian Gulf Health Registry

(PGR)

Gulf War veterans completing

voluntary medical examinations

Late 1992 to present Up to 10 diagnoses, coded by

ICD-9a

Patient Treatment File (PTF) Veterans receiving inpatient

treatment at VA hospitals

Gulf War to present Up to 10 diagnoses, coded by

ICD-9b

Outpatient Database Veterans receiving outpatient

treatment at VA medical facilities

1996 to present Up to 15 diagnoses, coded by

ICD-9

Compensation and Pension

(C&P) Masterfile

Veterans with 1 or more

service-connected disabilitiesc

Gulf War to present Up to 6 diagnoses, coded by

VA disability categories

Beneficiary Identification and

Records Locator Subsystem

(BIRLS)

Veterans denied and/or no

longer receiving disability

compensationd

Gulf War to present Up to 9 diagnoses, coded by

VA disability categories

aInternational Classification of Diseases, Version 9. Up to 1994, only three diagnoses were

recorded.

bIndividuals may have multiple records in the PTF and outpatient files as a result of multiple visits

to a VA medical facility. Thus, the number of diagnoses reported for an individual may be larger

when multiple records are merged.

cIncludes veterans whose illnesses are service-connected but who are receiving no

compensation as well as veterans receiving pensions. Does not include pending claims.

dFor veterans whose claims were denied, the database has no information to indicate reasons for

denial (e.g., due to lack of service connection, insufficient medical documentation). Diagnostic

information reflects what veterans submitted on claim applications. Therefore, these should be

viewed as potential cases of veterans with tumors.

Table 2: Number of Gulf War Veterans

With Benign and Malignant Tumors, by

VA Database Database

Benign

tumorsa

Malignant

tumors

Total veterans

with tumors

PGR 837 280 1,117

PTF 681 606 1,287

Outpatient 2,696 1,902 4,598

C&P 4,938 709 5,647

BIRLS 3,179 398 3,577

Total tumors 12,331 3,895 16,226

Total number of unique casesb 11,550 3,126 14,676

Note: A number of codes for tumors, including those for leukemia, Hodgkin’s disease,

non-Hodgkin’s lymphoma, and benign tumors of the gynecological system and mammary glands,

were omitted by VA when it created the C&P and BIRLS databases for our analysis.

aVeterans with one or more tumors diagnosed as malignant within all possible tumor diagnoses

were placed in the “malignant” category. Veterans with only benign tumors were categorized as

“benign.”

bGiven that the BIRLS data may reflect potential rather than diagnosed cases of tumors, there is a

total number of 11,333 unique cases when the other 4 databases are combined and the BIRLS

records are excluded from the analysis (8,502 benign and 2,831 malignant).

Page 14 GAO/T-NSIAD-98-186 Gulf War Veterans
Appendix I 

Table 3: Number of Gulf War Veterans With Tumors and Other Diagnoses

Tumor cases

Database

One tumor, no

other diagnoses

One tumor plus

other diagnoses

Multiple tumors, no

other diagnoses

Multiple tumors

plus other

diagnoses

Total veterans

with tumors

PGR 260 830 10 13 1,113

PTF 233 775 20 259 1,287

Outpatient 1,671 2,016 212 697 4,596

C&P 136 5,276 7 196 5,615

BIRLS 464 2,982 20 110 3,576

Note: Table does not reflect 39 missing cases of unspecified tumors. As a result, the numbers in

the column for total veterans with tumors will differ somewhat from the numbers in the same

column in table 2.

Table 4: Number of Tumors in Gulf War Veterans, by VA Health Administration Databases

Diagnostic code Type of tumor PTF Outpatient PGR

Malignant

140 - 149 Lip, oral cavity and pharynx 91 206 8

150 –159 Digestive organs and peritoneum 341 814 17

160 –165 Respiratory and intrathoracic organs 357 821 13

170 - 176 Bone, connective tissue, skin and breast 323 1,531 112

179 - 189 Genitourinary organs 389 1,159 45

190 - 199 Other unspecified sites 2,645 1,170 36

200 - 208 Lymphatic and hematopoietic tissue 702 1,848 58

Benign

210 Lip, oral cavity and pharynx 23 122 11

211 Other parts of digestive system 137 753 56

212 Respiratory and intrathoracic organs 31 60 5

213 Bones and articular cartilage 32 42 22

214 Lipoma 176 901 296

215 Other connective and other soft tissues 31 128 26

216 Skin 68 1,439 206

217 Breast 16 57 3

218 Uterine leiomyoma 136 342 30

219 Other, uterus 10 15

220 Ovary 8 5 1

221 Other female genital organs 3 15

222 Male genital organs 2 69 9

223 Kidney or other urinary organs 3 20 3

(continued)

Page 15 GAO/T-NSIAD-98-186 Gulf War Veterans
Appendix I 

Diagnostic code Type of tumor PTF Outpatient PGR

224 Eye 2 63 1

225 Brain and other parts of nervous system 30 94 6

226 Thyroid gland 15 23 2

227 Other endocrine glands and related structures 40 87 4

228 Hemangioma and lymphangioma, any site 43 80 38

229 Other and unspecified sites 9 107 13

Carcinoma in situ

230 Digestive organs 5 28

231 Respiratory system 2 24 1

232 Skin 1 40 3

233 Breast and genitourinary system 19 91 4

234 Other and unspecified sites 1 28 1

(235 –238) Neoplasms of uncertain behavior

235 Digestive and respiratory organs 33 35 2

236 Genitourinary 13 57 10

237 Endocrine glands and nervous system 33 76 21

238 Other and unspecified sites and tissues 63 432 32

239 Unspecified nature 46 387 46

Total 5,879 13,199 1,141

Number of other diseases 444 459 269

Number of other diagnoses 8,621 8,677 1,745

Page 16 GAO/T-NSIAD-98-186 Gulf War Veterans
Appendix I 

Table 5: Frequency of Tumors in Gulf War Veterans, by VA’s Benefits Administration Databases

Diagnostic code Type of tumor BIRLS C&P

5012 Bones, new growth, malignant 30 34

5015 Bones, new growth, benign 229 657

5327 Muscle, new growth, malignant - excludes soft tissue

sarcoma 4 4

5328 Muscle, new growth, benign 26 45

5329 Soft tissue sarcoma 1 12

6014 Eyeball, new growth, malignant 2 3

6015 Eyeball, new growth, benign 43 82

6208 Ear, new growth, malignant 1

6209 Ear, new growth, benign 12 46

6819 Respiratory system, new growth, malignant 57 85

6820 Respiratory system, new growth, benign 145 237

7343 Digestive system, any specified part, new growth,

malignant 67 57

7344 Digestive system, any specified part, new growth, benign 80 187

7528 Genitourinary system, new growth, malignant 51 148

7529 Genitourinary system, new growth, benign 194 297

7627 Gynecological system, new growth, malignant 34 65

7628 Gynecological system, new growth, benign 9 18

7818 Skin, new growth, malignant 156 248

7819 Skin, new growth, benign 2,740 3,742

7914 Endocrine system, new growth, malignant 11 52

7915 Endocrine system, new growth, benign 20 60

8002 Brain, new growth, malignant 36 53

8003 Brain, new growth, benign 20 75

8021 Spinal cord, new growth malignant 7 9

8022 Spinal cord, new growth, benign 3 20

Total 3,978 6,236

Number of other diseases 448 530

Number of other diagnoses 12,620 22,576

(713027) Page 17 GAO/T-NSIAD-98-186 Gulf War Veterans
Ordering Information

The first copy of each GAO report and testimony is free.

Additional copies are $2 each. Orders should be sent to the

following address, accompanied by a check or money order

made out to the Superintendent of Documents, when

necessary. VISA and MasterCard credit cards are accepted, also.

Orders for 100 or more copies to be mailed to a single address

are discounted 25 percent.

Orders by mail:

U.S. General Accounting Office

P.O. Box 37050

Washington, DC 20013

or visit:

Room 1100

700 4th St. NW (corner of 4th and G Sts. NW)

U.S. General Accounting Office

Washington, DC

Orders may also be placed by calling (202) 512-6000 

or by using fax number (202) 512-6061, or TDD (202) 512-2537.

Each day, GAO issues a list of newly available reports and

testimony. To receive facsimile copies of the daily list or any

list from the past 30 days, please call (202) 512-6000 using a

touchtone phone. A recorded menu will provide information on

how to obtain these lists.

For information on how to access GAO reports on the INTERNET,

send an e-mail message with "info" in the body to:

info@www.gao.gov

or visit GAO’s World Wide Web Home Page at:

http://www.gao.gov

PRINTED ON RECYCLED PAPER
United States

General Accounting Office

Washington, D.C. 20548-0001

Official Business

Penalty for Private Use $300

Address Correction Requested

Bulk Rate

Postage & Fees Paid

GAO

Permit No. G100