The Department of Veterans Affairs Persian

Gulf Veterans' Health Registry

September 1993

OTA-H-577

NTIS order #PB94-107604
Recommended Citation:

U.S. Congress, Office of Technology Assessment, The Department of Veterans Affairs Persian Gulf

Veterans’ Health Registry, OTA-H-577 (Washington, DC: September 1993).
Clyde J. Behney

Assistant Director, OTA

Health, Life Sciences, and

the Environment

Project Staff

HELLEN GELBAND

Project Director

MARlA HEWlTT

Senior Analyst

Beckie Erickson

Office Administrator
Contents

Summary

OTA’s Mandate to Assess the Persian Gulf Registries

Current Status of the VA Examination Registry

Comments on the VA Registry Examination Protocol

Strengths and Limitations of the

Concerns About Coordination of

Other Exposures of Interest

Other Sources of Information on

Persian Gulf Veterans

A

B

APPENDIXES

Registry Complex

VA and DoD Activities

Health Problems of

Specific Comments on VA Examination Protocol

-

OTA Workshop Participants, Persian Gulf War Veterans’

Health, Washington, DC, July 29, 1993

10

14
Summary

When Congress directed the U.S. Department of Veterans Affairs (VA)

to create a registry for health examinations of Persian Gulf veterans, the

greatest potential hazard appeared to be smoke pouring from hundreds of

oil wells that had been set on fire by the Iraqis. The U.S. Department of

Defense (DoD) list of Desert Storm/Desert Shield participants and the

locations of their units in relation to oil fire smoke--the other piece to this

registry complex (see figure) --also was driven singularly by concern about

the effect of the fires on veterans’ health, not only in the short run, but for

years afterward. In addition to its role in providing comprehensive medical

examinations to concerned Persian Gulf veterans, the VA registry was

conceived as a means to identify “sentinel” conditions possibly

consequent to Persian Gulf service. Because the registry ’comprises veterans who either have health problems or are particularly concerned about

their health--not a representative sample of veterans--analyses of the

registry data cannot, themselves, provide clear evidence of a link between

Persian Gulf exposures and any specific medical condition. But

conditions seen in registry participants could provoke suspicion of a link,

which could then be investigated in a formal epidemiologic study.

The law mandating creation of the VA registry also mandated this

Office of Technology Assessment (OTA) assessment and, in the long

term, set up an arrangement for review of the registry data by the Institute

of Medicine’s Medical Follow-Up Agency (MFUA). It is MFUA that will have

the difficult task of recommending when in-depth studies should be

considered.

Once completed, the registry complex may be used in various ways to

consider possible health damage from the oil fire smoke. DoD will be able

to answer questions from individual veterans about their level of exposure

using daily company locations and modeled data on air pollutants. The

DoD registry also could be used to identify cohorts of individuals with

relatively high and relatively low exposure to oil fire pollutants, should it

be desirable to do so for the purposes of an in-depth study. The

emphasis on oil fires as the exposure around which the registries are

constructed, however, means that they will be much less useful for

exploring other potential hazards, except those with known geographic
FIGURE: The Persian Gulf Registry “Complex”

VA

Persian Gulf

Veterans’

Health

Registry

DoD

Persian Gulf

Registry

Standardized, coded records

of each Persian Gulf

registry examination conducted

at a VA Medical Center

Personnel List:

Defense Manpower Data Center

file of ail who served in the

Persian Gulf

Daily Troop Locations:

U.S. Army and Joint Services

Environmental Support Group file of

daily grid coordinates for each military

unit during the Persian Gulf era

Air Pollution Model:

U.S. Army Environmental Hygiene

Agency model of oil fire pollutants over

the Persian Gulf theater of operations

based on concurrent pollutant monitoring

and atmospheric data
OTA’s Mandate to Assess the Persian Gulf Registries 3

distributions or those that may be unique to certain units or military

occupations.

The limitation of the registries, which have been conceived in accordance with congressional mandates, are worth noting. in the VA registry,

only relatively rare or unusual conditions, or more common conditions occurring at extremely high rates, will stand out against background rates.

in-depth studies of factors other than oil fire smoke, other strictly

geographic variables, or possibly those associated with military

occupations, will not be facilitated by the DoD registry. information on

exposures other than oil fires would have to be collected on an ad hoc

basis, and may not be possible to document. Already, concerns about

inoculations, depleted uranium, vehicle paint, diesel fumes, and chemical

warfare agents, to name a few, have surfaced. Whether or not these

represent real threats, they must, at the very least, be acknowledged and

considered for further evaluation. it should be stressed that data from the

VA registry can provide only descriptive information about that self-selected population. While the registry population can and should be compared with a similar group not enrolled in the registry, that comparison

cannot tell us about a relationship between serving in the Persian Gulf and

the occurrence of health conditions.

Some near-term activities that could improve the quality and overall

utility of the VA registry are discussed in the body of this background

paper and include:

● VA making changes in the collection of medical history and exposure

information for the Persian Gulf War Veterans Health Registry;

● VA and DoD standardizing terminology used in their respective

registries;

● supplementing the existing coordination and cooperation between

DoD and VA to enhance compatibility of the registries by appointing

a single Advisory Board to oversee both activities;

● DoD assembling qualitative information about the Persian Gulf

conflict, including the distribution of other “exposures” and the

specific activities of military units; and

DoD and VA each cataloging and describing other health-reiated information avaliable for Persian Gulf veterans from before, during, and

after their tours of duty.
4 I The Department of Veterans Affairs Persian Gulf Veteran’s Health Registry

OTA’S MANDATE TO ASSESS THE

PERSIAN GULF REGISTRIES

OTA’s mandate for this report comes

from Public Law 102-585, which charged the

Director of OTA with assessing “the potential

utility” of the DoD and VA registries for “scientific

study and assessment of the intermediate and

long-term health consequences of military

service in the Persian Gulf;” the extent to which

the registries meet the requirements of the law;

the extent to which the data are being collected

and stored appropriately; how useful they would

be for scientific studies; and related operational

questions. The law calls for separate OTA

reports on the VA and DoD registries.

This first report focuses on the VA

“Persian Gulf War Veterans Health Registry,”

which is referred to here as the “examination

registry.” The second report, due in February

1994, will report on DoD’s “Persian Gulf Registry,”

which is actually the combination of three unique

pieces: 1) a list of all individuals who served in

the Persian Gulf, 2) daily locations for each unit

(probably at the company level) during the

Persian Gulf era, and 3) daily oil fire smoke

pollutant levels modeled for the Persian Gulf

theater of operations during the period when the

wells were burning. The registries have distinct

and separate functions, but they also must be

compatible so that information from the

personnel registry can be retrieved easily for individuals in the VA registry. For this reason, we

refer to the VA and DoD activities together as a

“registry complex.” The interrelated nature of

VA’s and DoD’s work necessitated OTA beginning to examine DoD’s efforts in order to

evaluate VA’s registry properly. The result is that

some of the conclusions in this report apply both

to DoD and VA, and some to DoD alone. The

second report may also refer back to VA

activities.

A small group of experts in

epidemiology, statistics, medicine, and

toxicology assisted OTA with this evaluation at a

July 29, 1993 workshop. The Institute of

Medicine (IOM) also was represented by the

Director and staff members of Medical Follow-up

Agency (MFUA) and a consultant statistician.

The morning consisted of presentations from the

DoD and VA offices engaged in registry activities.

DoD also briefed the group on several studies

bearing on Persian Gulf veterans’ health that they

have been carrying out, which have already

produced useful information and which should

continue to do so. The workshop participant list

is attached as Appendix B.

CURRENT STATUS OF THE VA

EXAMINATION REGISTRY

VA began offering a Persian Gulf medical

examination in early 1993, consisting of a brief

medical history, some questions about exposure

to oil fire smoke in the Persian Gulf, a complete

physical and general laboratory tests and

optional special tests (e.g., for lung function) and

referrals. The examination is available at all VA

medical centers. Two physicians at each center,

the designated “environmental physician” and

specified alternate, are charged with conducting

the examinations. Three referral centers have

been established, in Washington, DC, Houston,

and West Los Angeles, for cases not diagnosable

at the local centers. The Houston site has a

special focus on multiple chemical sensitivity,

and Ieishmaniasis cases are being seen in

Washington, DC.

Examination results are recorded in the

veteran’s medical record and selected

information is entered on a 2-page registry form

that is sent by the VA medical center at which the

examination takes place directly to a central

processing center in Texas where the data are

keyed into the registry file. The VA reports that

this basic arrangement is similar to the agent

orange and ionizing radiation registries.

Early on, the VA developed an

addendum to the examination to elicit a more

detailel-medical history, mental status, history of

exposures and experiences in the Persian Gulf,

and various other pieces of information. The ad-
The Department of Veterans Affairs Persian Gulf Veteran’s Health Registry 5

dendum is being administered to only a sample

of veterans in a pilot trial. The VA intends to

assess the usefulness of the addendum with the

help of an existing “blue ribbon panel” or a

successor to it, a permanent advisory committee

that has not yet been appointed.

As of June 30, 1993, about 8,000 Persian

Gulf examinations had been conducted and

about 6,000 had been recorded in the electronic

database.

VA has encouraged Persian Gulf

veterans to take advantage of the examination in

a number of ways. Posters have been placed in

all VA medical centers, mobile displays have

been sent to various places, the veterans’ service

organizations have been notified, and a Persian

Gulf newsletter has been produced. Letters have

been sent to all veterans or their survivors who

have been compensated for Persian Gulf-related

problems, notifying them of their eligibility for the

registry (presumably, the existing medical records for these individuals would be used in

place of a new examination). VA workers have

been instructed to offer the special examination

to Persian Gulf veterans who come to medical

centers for treatment or other services.

Information on Persian Gulf veterans can be

included in the registry only with their consent,

however (except for deceased veterans, who

may be included without consent of their next-ofkin, according to VA).

COMMENTS ON THE VA REGISTRY

EXAMINATION PROTOCOL

An important function of the VA

examination is to provide veterans with a

comprehensive medical checkup and to investigate

particular complaints. The protocol in use seems

to fulfill this need. However, striking the right

balance for collecting information that will be

useful as a surveillance tool over the long

term is more difficult. A useful guidepost for

deciding about what to include or exclude is the

desire to keep the registry simple and avoid

collecting data that are not justifiable given the

limitations of the sample. Information related to

health status should be collected as precisely as

possible, but effort collecting information on

exposures, for which no control group is

available, would be wasted.

Some specific problems related to the

examination protocol and the coding sheets,

particularly for their surveillance value, are

identified in Appendix A of this report. This section discusses general concerns with these

items.

Medical and Personal History

The current protocol is somewhat weak

on medical and personal history, which is

covered in great detail in the addendum. The

addition of some history questions is justified

(e.g., smoking history and civilian occupational

history), but there may be too many in the

addendum. Resolution of this issue requires a

vision of what the information will be used for, beyond any immediate use in dealing with the

veteran’s medical problems. Even if it may be of

immediate use, it may not be of long-term value,

so may not need to be a permanent part of the

registry (presumably, much more information is

generated during the examination and recorded

on the medical record than is actually coded).

Health Status Information

The value of the registry to detect

sentinel health conditions depends entirely on

the medical information captured in the system,

but the coding form places strict limits on how

much of this information will enter the registry.

There is room to write in and code only three

complaints and three diagnoses. Even a simple

recording of the number of complaints a veteran

has is limited to five (an entry of “5” denotes five

or more complaints). People reporting with what
6 I The Department of Veterans Affairs Persian Gulf Veteran’s Health Registry

has been termed the “mystery illness”l may have

more than five complaints, and this information

would be lost. Nor are there instructions in the

Coding Manual to guide a physician about how

to choose which three complaints to write out.

VA should consider making sure that all relevant

medical status information is captured in the

registry and that the amount of this important

information is not limited arbitrarily (i.e., all complaints and diagnoses should be written out and

coded). The basic form need not be made

unduly long if a form can be added for people

with many complaints. Losing this information is

not acceptable.

Exposure Information

An attempt is made in the current

examination protocol to collect information about

exposure to oil fires using six questions (e.g., “1

was enveloped in smoke,” and”1 ate food or drink

that could have been contaminated by oil or

smoke”). Answers are graded from “definitely

yes” to “definitely no.” A number of questions

about other experiences and exposures during

Desert Shield/Desert Storm service are in the

addendum. Other than asking veterans what

they think might be the cause of their conditions,

and possibly what other exposures or

experiences in the Gulf are worrisome, there is

reason to question whether any of this selfrepotted exposure information will prove to be of

value. Unless it can be justified in terms of

potential surveillance use, VA should consider

dropping it and limiting any other exposure

questions from the addendum. If these

questions are kept, the wording should be

1The "mystery illness” denotes a variable group of

symptoms reported by members of the 123rd Army

Reserve Command after their return from the

Persian Gulf. The “outbreak” was investigated

thoroughly by the Walter Reed Army Institute of

Research and reported on in a June 15, 1992

report.

reviewed for clarity (e.g., a veteran might answer

“yes” if he or she was heavily exposed to passive

cigarette smoke),

Standardization

Given that this examination is being

offered at all 171 VA medical centers around the

country, a general concern is the problem of

standardization. VA does provide training for environmental physicians using the protocol, but

the written instructions may not be sufficient to

ensure an understanding of what is expected.

The examples described above related to

medical status (no instruction on how to select

which complaints and diagnoses to code) and

exposure (no instruction on how to elicit why the

veteran thinks he or she might be ill) illustrate the

potential problems that might arise if physicians

at different centers are inclined to make different

choices.

Protocol Revision Process

VA has indicated that it will seek the

advice of an advisory group to evaluate the

addendum and agree on a final protocol. This

would be a very useful approach. The advisory

group must be chosen carefully for this particular

task, however, including sufficient medical and

epidemiologic expertise to evaluate each item

critically, both in terms of the validity of the

question and of the potential value of the

information collected. Information on exposures

and the various psychological questions on the

addendum are of particular concern. The issue

of standardization among centers also should be

considered. As discussed in the section below

concerning coordination between VA and DoD, it

is important that each item, particularly those

relating to military experience and

demographics, be reviewed with DoD input for

consistency with the data in their personnel

registry. A decision also must be made about

whether to go back to those veterans (either in

person or by mail or telephone) who already

have been examined to seek additional

information.
The Department of Veterans Affairs Persian Gulf Veteran’s Health Registry 7

STRENGTHS AND LIMITATIONS OF

THE REGISTRY COMPLEX

Strengths

One factor that distinguishes this registry

from others that rely on self-referrals is that the

reference population--all Persian Gulf veterans--is

known. A Defense Manpower Data Center

(DMDC) electronic file lists all those who served

in the Gulf, including reservists and those still on

active duty, and contains a set of demographic

and military information about each. It should be

possible to compare the registry population with

a sample (or possibly the entire) population from

the DMDC file to find out how different or similar

they are. This could be useful to MFUA in its

judgments about the medical conditions

reported.

Limitations

While the registry complex can serve a

useful purpose, the limits of what can be

achieved are substantial. First and foremost, it

cannot be used to determine cause-and-effect

relationships. It never will be possible using the

registry to say that any particular condition is

caused by a particular exposure or event that

happened in the Persian Gulf. At best, it will play

the role of case reports in medicine, alerting VA

and MFUA that veterans believe they may be

suffering effects of Persian Gulf service. It is

probably safe to say that for many conditions, no

suggestive link will be found. For others, a

decision will have to be made whether to pursue

a potential link through focused epidemiologic

studies, considering both the strength of the

suspicion and the feasibility of acquiring the

necessary exposure information.

People reporting to the registry will not

be representative of the population of Gulf

veterans, a point of which Congress was aware

when it mandated creation of the registry.

Veterans presenting for the examination are

either suffering from a condition or concerned for

other reasons about their health. This much is

obvious. But it should also be pointed out,

based on experience with other registries, that

the makeup of the registry population may well

be influenced by external factors, including

stories in the news about particular problems

being experienced by veterans. So even what

appears to be an unusual number of cases (in

proportion to the total registry population) with a

particular diagnosis or symptom may not

represent an excess in the veteran population as

a whole. A question on the registry form asking

what prompted the veteran to seek an examination might be helpful in understanding the

distribution of conditions reported. The difficult

task is sorting out the conditions that may

actually be linked to Persian Gulf service from the

unlikely ones.

CONCERNS ABOUT COORDINATION

OF VA AND DOD ACTIVITIES

Coordination between VA and DoD is

taking place, but it may not be sufficient to

ensure that, at a practical level, the registry

complex can be most effective. Coordination

activities should take place among the people

responsible for the tasks involved, but a joint

VA/DoD permanent oversight group with

responsibility for both registries may also be

needed.

Three main areas could benefit from

increased coordination: 1) ensuring that both

veterans and those on active duty have the

opportunity to enter the registry; 2) ensuring

consistency in the personal identifying information in the two registries so that they can be

linked easily; and 3) ensuring consistency of data

elements between the two systems where appropriate and eliminating redundant information

from the VA registry. These three topics are

discussed briefly below.

According to the law, active duty military

personnel who served in the Persian Gulf should

have the option of entry into the registry. Thus

far, very few individuals on active duty have been

included, and this lack appears to be due in part
8 I The Department of Veterans Affairs Persian Gulf Veteran’s Health Registry

to lack of facilitating administrative arrangements.

The number of people on active duty who would

avail themselves of this opportunity may be

small, but their option should not be foreclosed.

In addition, it would be useful for information on

inpatients (either active duty or retired) with

Persian Gulf service who are treated at DoD

hospitals to be available for review by VA and

MFUA, if it is possible for DoD to provide this.

Some agreement between DoD and VA may be

required for this to happen.

A number of items on the VA coding

sheet correspond to information on the DoD file.

To the extent possible, the items should be

collected in a consistent fashion. For example,

the codes for race/ethnicity on the VA form are

different from those used by the services, and do

not allow the range of choices that might be

desirable. The personal identifiers (mainly name

and Social Security number) may be recorded

appropriately for cross-matching the VA and DoD

files for individuals, but it is not clear that there

has been consultation on this. In addition,

military unit is recorded differently in the VA and

DoD registries. The VA registry form asks for the

veteran’s unit by name (e.g., Company C, 1st

Battalion, 4th Army), while the DMDC database

classifies the units using an alphanumeric code

that is unrelated to the names. Translating one to

the other is not a complicated task, but it is not

obvious where it will take place or who will do it,

should it be necessary.

This information would serve as a better

cross-check if it were consistent. (The Office of

Management and Budget has issued a directive

with standards for collecting race and ethnicity

information, which might be used for this

purpose.) Other information, such as military

history, is available from the DoD personnel

registry, taken directly from each individual’s

personnel file. It may not be necessary for the

veteran to recount this on the VA form. It

probably would be beneficial for each item on the

VA form to be reviewed with DoD to assure consistency and to evaluate whether it needs to be

collected at all. If there is a question about

possible errors in the DoD file, VA could arrange

with DoD for a printout of the DoD file to be sent

to each veteran in the registry for corroboration

after the examination.

OTHER EXPOSURES OF INTEREST

Discussion and concern about

exposures other than oil fire smoke already are

apparent. They have been brought up at

congressional hearings and in print; included are

depleted uranium, inoculations, an anti-nerve gas

compound (pyridostigmine), exposure to

petrochemicals in other ways (e.g., diesel fumes

from tent heaters), pesticides, microwaves,

infectious agents (e.g., Ieishmaniasis, malaria),

chemical warfare agents (though there was no

known use), a special paint, and others.

Additional concerns are bound to surface in the

coming years. Unlike oil fire exposure, where

exposure estimates will be based on recorded

information, finding out about many other

exposures may depend on personal recollection.

Qualitative History of Persian Gulf for

Exposures

It is not possible, nor would it necessarily

be desirable, to gather individual, detailed data

on a large number of exposures or experiences

that occurred in the Persian Gulf, just in case

they become important later on. The general

environment and the military activities were

complex and data on the occurrence and

distribution of exposures are generally not easy

to get. Some basic information about unit

movements and activities and about the range of

activities of individuals could be gathered now--in

the form of a “qualitative history’’--and could

serve as a reference later on. If this is to be

undertaken, it should be done soon. At least

some of the information needed is “labile” and will

become more and more difficult to ferret out and

verify with the passage of time.
The Department of Veterans Affairs Persian Gulf Veteran’s Health Registry 9

Items that should be covered in such a

report include:

● Unit-by-unit descriptions of locations and

activites. Base locations will be available

from the DoD registry, but the daily activities

will not. It could become important to know

when units engaged in combat and how

heavy the fighting was. Some idea of the

amount of ammunition used might be helpful,

for instance. In addition, it would be useful to

know how much dispersion there was within

a unit on a given day. While it will not be

possible to quantify this or to describe it on a

day-by-day basis, but at least a relative sense

of dispersion by type of unit or location

would be useful. It could be important to

know this if a geographically described

exposure is being considered, given that

locations for individuals in the DoD database

are represented by their unit (probably

company) locations only.

● Descri’”ens of the range of activites by

military occupational specialty (MOS). While

MOS defines an individual’s activities to

some extent, it is not adequate to describe

the range of activities and exposures of any

individual. With specific exposures in mind

(e.g., degreasers, diesel fuel), it would be

helpful to know what people actually did in

the Persian Gulf.

Getting the information for this report

would involve a combination of research in

military records, possibly other government

documents, probably personal inteviews with

key individuals, and sample surveys of veterans

to elicit their personal experiences and

exposures. One caution is that individuals,

particularly in military situations, may not know

about many exposures (e.g., if insecticide is

sprayed one day and troops enter the location

the next, they will not necessarily know the

spraying had been carried out). It is important,

to ensure credibility, that a mechanism be

developed to allow input and review from a

representative group of veterans before the

report is issued. In addition, the report should

be written so that it is readily understandable

by individuals not schooled in military

operations.

OTHER SOURCES OF INFORMATION

ON HEALTH PROBLEMS OF PERSIAN

GULF VETERANS

It has become clear that potentially

useful information on current health problems of

Persian Gulf veterans, whether or not they are

attributable to their service, resides in places

other than the VA registry. It will be important for

MFUA to be aware of this information and to

have access to it for their periodic reviews. This

includes new health records, information already

recorded in the veteran’s DoD or VA files, and

results of ongoing VA and DoD studies of Persian

Gulf veterans.

Some sources have been brought to

OTA’s attention. For instance, discharge

diagnoses are recorded for inpatients treated at

VA hospitals and Persian Gulf veterans are

specifically identified in that patient treatment file.

In an analysis provided to OTA, VA researchers

listed the distribution of all major diagnostic categories for Persian Gulf veterans and a similarsized group of Persian Gulf-era veterans (who

had not served in the Gu1f.

The deaths of most veterans are

reported to VA and logged in a system that

records all compensation claims. Copies of

death certificates usually are submitted, and

these could be available for review. While relatively few deaths would be expected in this

young population, they would represent the most

serious conditions.

There may also be valuable information

in DoD personnel and medical records and

laboratories (e.g., induction physicals and

psychological testing, stored serum samples). It

is important to researchers for the design of

future-studies, should they become necessary, to

know just what sources of data exist for these

individuals.
10 I The Department of Veterans Affairs Persian Gulf

A description of these sources including

data from before, during, and after Persian Gulf

service could be made available from DoD and

VA to Congress and to MFUA. If carried out,

each data source should be identified and

described, including a list of all available data

elements. In addition, for each source, an

estimate of the completeness of coverage for

Persian Gulf veterans and other Gulf-era veterans

should be made. Issues related to confidentiality

or other issues of access to the records also

should be covered in the reports. In addition,

updates of relevant ongoing studies should be

made available to MFUA.

CONCLUSIONS

A good start has been made on all facets

of the registry complex. Changes made at this

stage could improve the usefulness of the

information gathered in the VA examination

registry and lay a better foundation for co

Veteran’s Health Registry

ordination among the pieces of the registry

complex once they are complete. Specific OTA

conclusions include the following:

1,

2.

3.

4.

5.

VA should focus immediately on revising the

examination protocol.

Terminology used by VA and DoD should be

brought into conformity, where appropriate.

A joint oversight body for the VA and DoD

registries and their related activities should

be appointed, which would enhance existing

coordination and cooperation.

Information on exposures and other

experiences of Desert Shield/Desert Storm

should be assembled by DoD in a qualitative

history for the Persian Gulf theater of

operations.

DoD and VA should assemble annotated

inventories of all sources of relevant health

and demographic data, other than the

registries, for Persian Gulf veterans.
APPENDIX A:

Specific Comments

on VA Examination Protocol

Item 9-Race/Ethnicity: Cannot distinguish black and white Hispanics and

doesn’t match with most service classifications of race/ethnicity (which are all

different) in the personnel registry. There are classification systems already

established to code race/ethnicity; for instance, the one used by OMB

(Directive 15). A more inclusive set of codes should be considered.

Item 13-Cannot distinguish reservist from active duty service (although this

would be apparent from the unit identification, it might be considered here as

well, for clarity).

Item 14-The health registry allows recording last 2 periods of service in

Persian Gulf in item 14 and then last 2 periods in general in item 17 (if other

than Persian Gulf). It might not be necessary to ask about service other than

Persian Gulf here, as full service information is coded from service records in

the DoD personnel registry, and for the purposes of the VA registry, it is not

clear that having this other service information would assist with the medical

needs of the individual veteran.

Item 16-Only one military unit can be specified, but individuals did

sometimes change units. It is unclear which one should be entered here. The

DoD personnel registry seems to code the number of the last unit the

individual was in. This issue may require some DoD/VA coordination.

Item 18-Exposure questions are incomplete (no mention of some potential

exposures, e.g., DU, pesticide) and unclear (e.g.,”1 was enveloped in smoke”--

source could have been trash or oil fire or even passive cigarette smoke).

Consideration should be given to eliminating these questions unless they have

potential value in evaluating registry data. They could be replaced by one

open-ended question to the veteran asking what he or she thinks might be the

cause(s) of his or her medical problem.

Item 19--General description of veteran’s health: it is unclear whether this is

self-perception of health or the physician’s impression of health status.

1u.s. Department of Veterans Affairs, Veterans Health Administration Manual M-10,

“Environmental Medicine,” Part III “Persian Gulf Program" Chapters 1 and 2, December 7, 1992.
12 I The Department of Veterans Affairs Persian Gulf Veteran’s Health Registry

Item 21-a. Form is preceded for symptoms using 780-789 ICD-9-CM codes,

but this series of codes may not capture all symptoms likely to be reported

(e.g., codes for symptoms listed on page I-2, joint pain 719.40, hair loss

704.00, loose teeth 525.8, muscle soreness 729.1). Codes 780-799 include

symptoms that are ill-defined or not attributable to any one disease.

b.Limiting the number of complaints that can be listed to three will cause

potentially valuable information to be lost. Since getting this information is the

main purpose of the registry, virtually all should be captured. To avoid having

to lengthen the form with many more empty spaces, an addendum could be

designed for individuals with large numbers of complaints.

Item 22-This question, about whether the veteran attributes the chief

complaint to oil or smoke exposure, is a poor one. It is unclear what the chief

complaint might be (physician was not told to identify it), and other possible

attributions aren’t included (e.g., DU, viruses, etc.). it also isn’t clear whether

the veteran must volunteer this information, whether he or she is asked

specifically about it, and whether the list of possible exposures is to be read to

him or her.

Item 23-it is unclear why a number of complaints greater than 5 cannot be

recorded. It is also unclear whether this refers to the number of ICD-9 codes

or actual complaints (one ICD-9 can include numerous symptoms). By

example, it seems to be number of codes, which the computer could be

programmed to identify. If ail complaints are actually recorded in Item 22, this

would be unnecessary.

Item 24-- is unclear why birth defects are included but not infertility, or fetal

and infant deaths.

Item 24, 24B-if a woman reports she was pregnant in the Persian Gulf,

recording the date of birth and hospital of birth would facilitate any record

follow-up.

Item 25-This item provides some information on the content of the physical

examination and any referrals that are made. Whether workups/consultations

were performed for “dermatology, pulmonary, psychiatry, infertility/genetics,

parasitology, culture” and if so, whether the workup/consultation resulted in

“no diagnosis, diagnosis doubtful, or diagnosis” is recorded. Whether workup

was done by environmental physician or by a referring specialist cannot be

distinguished.

Item 27-This item allows up to three diagnoses to be listed. There is no way

to indicate whether more were made. The same comment for Item 21, above,

applies here. All diagnoses should be captured on this form.
The Department of Veterans Affairs Persian Gulf Veteran’s Health Registry 13

Item 29-This asks for the “year of onset for each diagnosis listed above.” It

should include also the month. It is unclear how this item should be filled out if

there are symptoms but no diagnosis is made. Usually it is onset of symptoms

that is recorded. No similar question is asked for Item 21. It may also be a

problem that complaints (item 21) aren’t necessarily linked to these

diagnoses, and there is not place to record that a problem appears to exist

but is not immediately diagnosable.

The value of a routine chest x-ray, blood count, SMA 6/12, urinalysis should

be justified.

How are special health needs of female vets (e.g., rape, sexual harassment),

mentioned on page 1-3, going to be handled in the registry?
OTA Consultants

George W. Comstock, M. D., Dr. Ph.

Johns Hopkins Training Center

Hagerstown, MD

William Eaton, Ph.D.

Department of Mental Hygiene

Johns Hopkins University School

of Hygiene and Public Health

Baltimore, MD

Alvaro Mufioz, Ph.D.

Department of Epidemiology

Johns Hopkins University School

of Hygiene and Public Health

Baltimore, MD

Jonathan Samet, M.D.

University of New Mexico Tumor

Registry

Albuquerque, NM

Thomas Smith, Ph.D.

Occupational Health Program

Harvard School of Public Health

Boston, MA

,

.“

Appendix B:

OTA Workshop Participants

Persian Gulf War Veterans’ Health

Washington, DC

July 29,1993

MFUA/10M

John Bailar, Ph.D.

Christopher Howson, Ph.D.

Richard Miller, M.D.

Diane Mundt, Ph.D.

U.S. Department of Defense

Ken St. Andre, M. D., M.P.H.

Don Hakenson

Major William Legg

U.S. Department of Veterans Affairs

Layne Drash

Frank Speizer, M.D.

Charming Laboratory

Boston, MA

15