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3
The Department of Veterans Affairs
Persian Gulf Registry and Uniform
Case Assessment Protocol
This section of the report describes the special VA program designed to
diagnose the health complaints of Persian Gulf veterans. The topics covered
include the initial examination (the Persian Gulf Registry), the secondary level
of examination (the UCAP), the process for referral, the data collection and
reporting system, the designated VA providers and their responsibilities, the
performance monitoring system, some descriptive statistics of program
participants, VA outreach efforts, and VA provider education activities.
PERSIAN GULF REGISTRY
In 1992, VA implemented a program aimed at diagnosing the health
problems of Persian Gulf veterans. In 1994, a revised VA clinical program for
diagnosing the health problems of Persian Gulf veterans vitas implemented. This
revised program is formally divided into two phases, the Registry examination
(Phase I) and the UCAP (Phase II). During the Phase I Registry examination,
(see Appendix F) a complete medical history is to be taken and is to include a
family history; an occupational history; a social history including tobacco,
alcohol, and drug use; a civilian history of possible exposures to toxic agents; a
psychosocial history; and finally, a review of systems. The examiner is to
record the time of onset of symptoms or condition, their intensity, the degree of
physical incapacitation, and details of any treatment received. In addition, each
veteran is to be given a complete blood count (CBC), an electrolyte glucose
21
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ADEQ US CY OF THE VA PERSIAN G ULF REGISTR Y AND UCAP
(SMA-6, SMA-12) or equivalent blood chemistries and enzyme studies, and a
. ~
urma. .ySlS.
PHASE II: UNIFORM CASE ASSESSMENT PROTOCOL
The manual specifies that, "Individuals who after completing Phase I or
Registry evaluations, have a disability and do not have a clearly defined
diagnosis which explains their symptoms, must receive the following
supplemental baseline laboratory tests and consultations." This level of
examination is called Phase II or UCAP.
According to VA Manual M-10, "The concept behind the protocol was to
identify previously unrecognized major diagnostic entities which could provide
an explanation for the symptoms commonly reported in Persian Gulf veterans
with unexplained illnesses." The protocol states that those referred to UCAP
"must receive" the tests listed for the Phase II protocol. For example, all
patients are to receive a set of supplemental baseline laboratory tests that include
a CBC, Sedimentation Rate Erythrocyte Sedimentation Rate, C-Reactive
Protein, Rheumatoid Factor, Anti-Nuclear Antibody, Liver Function, Creatine
Phosphokinase, Hepatitis Serology, Human Immunodeficiency, VDRL, B-12
and Folate, Thyroid Function Test, Urinalysis, and Tuberculosis skin test
Purified Protein Derivative.
In addition, the patient is to receive certain consultations including (1)
dental, but only if the participant's annual screening is not done; (2) infectious
disease; (3) psychiatry, but only with physician-administered instruments; and
(4) neuropsychological testing, but only as indicated by a psychiatry consult.
Additional examinations ordered are symptom-specific, that is, tests are
specified based on the symptoms. For example, if a patient complains of a
headache, he or she undergoes magnetic resonance imaging and receives a
lumbar puncture, which includes glucose, protein, cell count, VDRL,
oligoclonal (IgC), myelin basic protein, opening pressure, and neurology. Other
tests are required if patients exhibit other symptoms. (See Appendix G for the
complete Phase II protocol.)
REFERRAL
If, after completing the UCAP investigation of the veteran's symptoms and
conditions, a diagnosis is still elusive, the veteran may be referred to one of four
Persian Gulf Referral Centers. The centers located in Washington, D.C.,
Houston, and Los Angeles were established in 1992, and the one in
Birmingham, Alabama was established in 1995. The referral centers offer
inpatient stays during which the veteran is observed, multidisciplinary
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THE VA PERSIAN GULF REGISTRYAND UCAP
23
consultations and serial physical examinations are conducted, and lengthy
occupational and exposure histories are documented. Each center has available
providers with clinical and academic expertise in multispecialty areas including
pulmonary and infectious diseases, neurology, immunology, neuropsychology,
and toxicology. Once veterans have completed their stay at the referral center,
information is to be sent to the veteran's home VA medical center which is then
to assume responsibility for providing follow-up care.
DATA COLLECTION AND REPORTING
A Persian Gulf Registry Code Sheet (see Appendix H) has been developed
to collect basic information on all veterans seen through the Persian Gulf
Registry, UCAP, or Referral Center evaluations. Part I of the code sheet is
completed with the cooperation of the veteran and requests basic demographic
information, exposure history, the veteran's evaluation of his own health status,
and reproductive information. Part II of the Code Sheet is completed by the
examining physician and requests information on symptoms, consultations
needed, diagnoses, and the disposition of the patient (e.g., examination
completed, hospitalized for future tests, or referred for outpatient care).
If UCAP is undertaken because of significant symptoms but no identifiable
diagnosis, the remaining three pages of the Code Sheet are completed. The
information requested on these pages includes tests performed, consultations
completed, diagnoses made, and whether the physician believes that the veteran
has an unexplained illness. A copy of each coded form is submitted to the
Austin Automation Center, and the information on the form is entered into the
computerized database. The original code sheet is to be filed in the patient's
medical record. Copies are not returned to the medical center of origin unless
corrections are required. The code sheets are then forwarded to the central VA
headquarters in Washington, D.C. The information gathered by this process is
to be analyzed for detection of patterns of disease.
In addition to the Persian Gulf Registry Code Sheet, a bimonthly report is
required from all VA facilities (see Appendix I). This report provides statistical
information on the total number of initial and follow-up examinations as well as
cumulative totals, pending appointments, next appointment date, and number of
missed appointments.
PERSONNEL
Each VA health facility is to designate a Veterans' Registry Physician
(VRP) who is responsible for the clinical management of the Persian Gulf
veteran and who serves as the primary health care provider until another one has
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ADEQUACY OF THE VA PERSIAN GULF REGISTRY AND UCAP
been assigned. As defined in the VA manual, the major responsibilities of the
VRP include (1) explaining the purpose of the physical examination to the
veteran, (2) determining the focus of the initial examination and care provided
for the symptomatic veterans, and (3) conducting and documenting the physical
examination. This physician is also responsible for ensuring that a follow-up
letter is mailed to each veteran explaining the results of the examination and
laboratory tests (see Appendix J for sample follow-up letter).
In addition, each of the facilities is to have an identified Veterans' Registry
Coordinator (VRC) who is responsible for the administrative management of the
program including scheduling of appointments, monitoring time frame
compliance, reviewing records for accuracy and completeness, and collecting
data for the reporting process.
PERFORMANCE MONITORING
VA has developed an instrument (Appendix K) to be used "to assess and
monitor the appropriateness of medical care being provided" through the
Registry. Each VA medical center is to use the instrument to review at least
10% of its Registry examinations. The form elicits information on the required
components of the Registry examination including the presence or absence of a
Persian Gulf Registry Code Sheet in the health record; a "thorough history and
physical exam such as completion of an SF88"; a breast examination and a
gynecological examination for women; laboratory test results including CBC,
blood chemistries, urinalysis, and chest X ray; record of follow-up visit; record
of follow-up letter containing examination results and recommendations; and
whether or not specific examinations were ordered if the veteran complained of
persistent diarrhea, memory loss, shortness of breath, or chronic cough. A
summary form for recording the monitoring results is also completed by each
facility.
DESCRIPTIVE STATISTICS
Phase I Persian Gulf Registry examinations have been provided in 170 VA
health facilities. Between August 1992 and May 1997, 67,989 veterans had
received initial evaluations in these facilities. In September 1995 data began to
be collected in such a manner that it became possible to identify whether
veterans received Phase II examinations. From September 1995 to May 1997
data were collected on 5,970 patients. Of those patients, 695 received a Phase II
examination and 422 patients were referred to one of the four Referral Centers
for further evaluation.
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THE VA PERSIAN GULFREGISTRY AND UCAP
25
Of the 5,970 veterans for whom data were collected on Me revised Code
Sheet, 90.2% were male and 9.8% were female. In addition, 70.6% were in
active-duty units during the Persian Gulf War, 12.7% ~ Reserve units, and
11.1% were in the Guard; the unit status was unknown for 5.6% of those
participating in the program. Most Sequent complaints are listed in Table 3.1
while Table 3.2 lists the distribution of diagnoses.
TABLE 3.1 Most Frequent Complaints among 5,970 Patients
Complaint NumberPercent
Loss of memory and other general symptoms 1,68728.3
Headache 1,55226.0
Fatigue 1,49225.0
Muscle, joint pain 1,42323.8
Skin rash 1,37723.1
Sleep disturbances 71812.0
Shortness of breath 67911.4
Diarrhea and other gastrointestinal 65711.0
symptoms
Choking sensitivity 3656.1
Chest pain 2754.6
Abdominal 2634.4
Other symptoms involving skin and 244 4.2
integumentary tissue
Cough 222 3.7
TABLE 3.2 Distribution of Diagnoses among 5,970 Patients
Diagnosis NumberPercent
Musculoskeletal and connective 2,11135.4
tissue
Mental disorders 1,90932.0
Loss of memory and other general 1,68728.3
symptoms
No medical diagnosis 1,25220.9
Skin arid subcutaneous tissue 1,15619.4
Respiratory system 1,12018.8
Nervous system 1,02217.1
Digestive system 97116.3
Injury and poisoning 66611.1
Circulatory system 61310.3
Infectious diseases 5389.0
Genitourina~y system 3335.6
Neoplasm 450.8
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ADEQUACY OF THE VA PERSIAN GULFREGISTRYAND UCAP
Information obtained from the VA on the 5,970 patients seen through May
1997 indicates that 80.1% Of patients presenting with symptoms and examined
through the Registry and UCAP received a diagnosis whereas 19.9% Of patients
with symptoms received no diagnosis. Of those who did not receive a diagnosis,
11.6% were classified as having an unexplained illness. An unexplained illness
is defined by VA as "a single or multiple signs or symptoms which do not fulfill
the definition of any conventional medical diagnosis but have a significant
impact on the veteran's quality of life or functional status." It is possible,
therefore, for an individual veteran to have symptoms but no diagnosis and not
fulfill the criteria for unexplained illness.
OUTREACH
The Environmental Agents Service is the focal point within VA for clinical
issues related to Persian Gulf veterans. It is from this office that many outreach
efforts are organized and implemented. Extensive efforts have been expended
to inform Persian Gulf veterans of the services available through the VA health
care system. VA maintains a toll-free number (1-800-PGW-VETS or 1-800-
749-8387) for persons with questions about Persian Gulf health issues, research
findings, and applying for VA disability compensation. Veterans can request
information over this automated helpline 24 hours a day, 7 days a week, or
speak with a personal representative between 7:30 a.m. and 8:30 p.m. (central
time). Helpline representatives encourage veterans to obtain a Registry
examination. A VA Persian Gulf War veterans' illnesses home page is also
available on the world wide web (http://www.va.gov/gulf.htm).
The primary vehicle for disseminating updated Persian Gulf War-related
information to veterans is the Persian Gu/Review newsletter. This publication
is produced three to four times annually and is sent directly to all Registry
participants as well as to veterans who have asked to be placed on the mailing
list. Approximately 180,000 veterans receive the publication, as do all VA
medical centers, VA regional offices, and veterans' centers. To date, 14 issues
have been published, the most recent being in September 1997. Other items
produced for mass distribution include a brochure entitled "Persian Gulf
Veterans' Illnesses: Questions and Answers" and a two-page fact sheet entitled
"A Report to Veterans Department of Veterans Affairs Persian Gulf
Research." A few facilities have developed their own brochures describing their
programs for Persian Gulf veterans.
VA also offers an on-line bulletin board with updated information on
Persian Gulf issues. On that bulletin board one may access the most recent
issues of Persian Gu/Review, the most recent developments in Persian Gulf
concerns, and facts about VA benefits and medical care for Persian Gulf War
veterans.
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THE VA PERSIAN GULFREGISTRY AND UCAP
PROVIDER EDUCATION
27
Extensive educational materials aimed at VA health care providers have
been developed. The Environmental Agents Service periodically mails material
related to Persian Gulf veterans' concerns directly to the Registry physicians
and Registry coordinators in each VA health care facility.
Medical center staff also receive a substantial amount of information via
interactive satellite teleconferences, interactive quarterly national telephone
conference calls, and. annual educational conferences. The most recent national
conference on health consequences of service in the Persian Gulf War was held
in early June 1997. This program covered a range of subjects related to Persian
Gulf concerns (see Appendix L for a detailed agenda). In addition, a manual
filled with reference material was distributed to each participant.
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Representative terms from entire chapter:
gulf registry
