VA Health Care: Better Integration of Services Could Improve Gulf War
Veterans' Care (Letter Report, 08/19/98, GAO/HEHS-98-197).

Pursuant to a congressional request, GAO provided information on the
Department of Veterans Affairs (VA) provision of health care services to
Gulf War veterans, focusing on: (1) the number of veterans VA and the
Department of Defense (DOD) report as suffering from Gulf War-related
illnesses and the criteria used to identify these illnesses; (2) how VA
diagnoses, counsels, treats, and monitors Gulf War veterans for the
health problems they report; and (3) Gulf War veterans' satisfaction
with the health care they receive from VA.

GAO noted that: (1) while the number of Persian Gulf War veterans who
participated in the military operations known as Desert Shield and
Desert Storm is well established at almost 700,000, the number who
actually suffer, or believe they suffer, from illnesses related to their
Gulf War service remains uncertain 7 years after the war; (2) the
primary difficulty in assessing the impact of such illnesses lies in the
fact that the link between the veterans' symptoms and the causes of
those symptoms has not yet been identified scientifically; (3) thus,
while some data on Gulf War veterans' symptoms have been collected and
categorized, it is not yet known whether the symptoms reported are the
direct result of the veterans' Gulf War service; (4) combined, VA and
DOD report, however, that about 100,000 Gulf War veterans have requested
Persian Gulf Registry examinations because of war-related health (5) in
response to a variety of symptoms and illnesses reported by Gulf War
veterans, VA implemented a program in 1992 to help them receive VA
health care; (6) this free diagnostic and referral process has two
stages: (a) an initial medical history and a physical examination with
basic laboratory testing; and (b) if needed, further evaluation through
specialist consultation and additional symptom-specific testing; (7) 212
VA facilities offer the Registry program to Gulf War veterans; (8)
however, VA's guidance regarding the evaluation and diagnosis of Gulf
War veterans is not being consistently implemented in some of its
medical facilities; (9) while VA records show that thousands of veterans
remain undiagnosed, only about 500 veterans have been sent to referral
centers for additional evaluations, as recommended by the Registry
guidance; (10) mandated personal counseling of veterans often does not
occur, and the form letters sent to veterans at the completion of the
Registry examination do not always sufficiently explain test results or
diagnoses, often leaving veterans frustrated and confused; (11) VA's
guidance provides that Registry physicians are responsible for giving
veterans medical examinations and necessary treatment; (12) VA has not
fully developed and implemented an integrated diagnostic and treatment
program to meet the health care needs of Gulf War veterans; (13) VA's
diagnostic and treatment implementation problems are reflected by Gulf
War veterans' general dissatisfaction with their health care; and (14)
based on GAO's nationwide survey, over one half of the veterans who
received the Registry examination in 1996 and 1997 were dissatisfied
with the examination they received.

--------------------------- Indexing Terms -----------------------------

 REPORTNUM:  HEHS-98-197
     TITLE:  VA Health Care: Better Integration of Services Could 
             Improve Gulf War Veterans' Care
      DATE:  08/19/98
   SUBJECT:  Disease detection or diagnosis
             Health care services
             Medical examinations
             Military personnel
             Biological warfare
             Health services administration
             Armed forces abroad
             Veterans hospitals
             Health hazards
IDENTIFIER:  VA Persian Gulf War Health Registry
             Gulf War Syndrome
             Persian Gulf War
             DOD Persian Gulf War Health Surveillance System
             
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Cover
================================================================ COVER


Report to Congressional Requesters

August 1998

VA HEALTH CARE - BETTER
INTEGRATION OF SERVICES COULD
IMPROVE GULF WAR VETERANS' CARE

GAO/HEHS-98-197

Treatment for Gulf War Illnesses

(101606)


Abbreviations
=============================================================== ABBREV

  DOD - Department of Defense
  IOM - Institute of Medicine
  VA - Department of Veterans Affairs
  VHA - Veterans Health Administration
  VISN - Veterans Integrated Service Network

Letter
=============================================================== LETTER


B-278641

August 19, 1998

The Honorable Cliff Stearns
Chairman, Subcommittee on Health
Committee on Veterans' Affairs
House of Representatives

The Honorable Christopher J.  Dodd
United States Senate

Almost 700,000 members of the U.S.  military served in Southwest Asia
during the Persian Gulf War.  Some of these Gulf War veterans
subsequently reported an array of symptoms that they attributed to
their service in the Gulf, including fatigue, skin rashes, headaches,
muscle and joint pain, memory loss, shortness of breath, sleep
disturbances, gastrointestinal conditions, and chest pain.  The
absence of data on the health status of service members who served in
the Gulf War--including both baseline information and postdeployment
status information--has, however, greatly complicated the
epidemiological research on the causes of Gulf War illnesses.\1

In 1992, the Department of Veterans Affairs (VA) established the
Persian Gulf Registry Health Examination Program primarily to assist
Gulf War veterans in gaining entry into the continuum of VA health
care services by providing them with a free physical examination and
by acting as a health screening database.  As of March 1998, about
68,000 Gulf War veterans had participated in VA's Registry program. 
In 1994 the Department of Defense (DOD) implemented a clinical
evaluation program similar to VA's in which about 33,000 military
personnel have participated. 

This letter responds to your interest in VA's provision of health
care services to Gulf War veterans.  We provided preliminary
information on the results of our review work in testimony before the
Subcommittee on June 19, 1997, and in a letter to the Senate
Committee on Veterans' Affairs on April 20, 1998.  This is the final
report on the results of our review of (1) the number of veterans VA
and DOD report as suffering from Gulf War-related illnesses and the
criteria used to identify these illnesses; (2) how VA diagnoses,
counsels, treats, and monitors Gulf War veterans for the health
problems they report; and (3) Gulf War veterans' satisfaction with
the health care they receive from VA.  A listing of GAO products
addressing various Gulf War issues appears at the end of this report. 

To evaluate VA's diagnosis, counseling, treatment, and monitoring of
Gulf War veterans, we met with VA officials responsible for managing
and implementing the Persian Gulf Registry program and reviewed
legislation, program guidance, program operating procedures, and
management reports.  We conducted case studies at six VA medical
facilities, during which we talked with program staff members,
observed program operations, and reviewed a sample of veterans'
medical records to identify the types of services provided.  We also
reviewed reports issued by others, including the National Academy of
Science's Institute of Medicine (IOM).  IOM recently issued a report
on its assessment of the adequacy and implementation of VA's Persian
Gulf Registry protocol as a diagnostic tool for assessing the medical
needs of Persian Gulf veterans.\2 We did not attempt to determine the
appropriateness of the tests, evaluations, and treatment provided to
these veterans, but rather examined whether VA followed its
guidelines and procedures in caring for Gulf War veterans.  To
determine veteran satisfaction with VA's Gulf War health care
services, we talked with and reviewed correspondence from Gulf War
veterans we contacted, or who contacted us, and surveyed a nationwide
random sample of veterans who participated in the Persian Gulf
Registry program during 1996 and 1997.  Further details of our scope
and methodology are in appendix I.  We did our work between March
1997 and May 1998 in accordance with generally accepted government
auditing standards. 


--------------------
\1 Defense Health Care:  Medical Surveillance Improved Since Gulf
War, but Mixed Results in Bosnia (GAO/NSIAD-97-136, May 13, 1997). 

\2 National Academy of Science, Institute of Medicine, Adequacy of
the VA Persian Gulf Registry and Uniform Case Assessment Protocol
(Washington, D.C.:  National Academy Press, 1998). 


   RESULTS IN BRIEF
------------------------------------------------------------ Letter :1

While the number of Persian Gulf War veterans who participated in the
military operations known as Desert Shield and Desert Storm is well
established at almost 700,000, the number who actually suffer, or
believe they suffer, from illnesses related to their Gulf War service
remains uncertain 7 years after the war.  The primary difficulty in
assessing the impact of such illnesses lies in the fact that the link
between the veterans' symptoms and the causes of those symptoms has
not yet been identified scientifically.  Thus, while some data on
Gulf War veterans' symptoms have been collected and categorized, it
is not yet known whether the symptoms reported are the direct result
of the veterans' Gulf War service.  Combined, VA and DOD report,
however, that about 100,000 Gulf War veterans have requested Registry
examinations because of war-related health concerns. 

In response to a variety of symptoms and illnesses reported by Gulf
War veterans, VA implemented a program in 1992 to help them receive
VA health care.  This free diagnostic and referral process has two
stages:  (1) an initial medical history and a physical examination
with basic laboratory testing and (2) if needed, further evaluation
through specialist consultation and additional symptom-specific
testing.  Currently, 212 VA facilities offer the Registry program to
Gulf War veterans.  However, VA's guidance regarding the evaluation
and diagnosis of Gulf War veterans is not being consistently
implemented in some of its medical facilities.  More specifically,
some physicians do not perform all of the symptom-specific tests
recommended by VA, which could result in some veterans not receiving
a clearly defined diagnosis for their symptoms.  Moreover, while VA
records show that thousands of veterans remain undiagnosed, only
about 500 veterans have been sent to referral centers for additional
evaluations, as recommended by the Registry guidance.  In addition,
mandated personal counseling of veterans often does not occur, and
the form letters sent to veterans at the completion of the Registry
examination do not always sufficiently explain test results or
diagnoses, often leaving veterans frustrated and confused. 

VA's guidance provides that Registry physicians are responsible for
giving veterans medical examinations and necessary treatment. 
However, VA has not fully developed and implemented an integrated
diagnostic and treatment program to meet the health care needs of
Gulf War veterans.  For example, in two of the six facilities we
visited, veterans received ongoing treatment from the Registry
physician or a select group of health care providers who are familiar
with the illnesses experienced by Gulf War veterans.  However, in
four of the six facilities we visited, veterans who were given the
Registry examination were no longer treated by the Registry staff but
were instead referred to primary care physicians or teams for
treatment.  Primary care physicians typically do not specialize in
the care and treatment of Gulf War veterans but rather are
responsible for serving the general veteran population.  In addition,
efforts to monitor the clinical progress of Gulf War veterans have
been limited.  VA officials acknowledge that such efforts are
critical but have only recently taken preliminary steps to begin
tracking Gulf War veterans' health and treatment outcomes. 

VA's diagnostic and treatment implementation problems are reflected
by Gulf War veterans' general dissatisfaction with their health care. 
On the basis of our nationwide survey, over one half of the veterans
who received the Registry examination in 1996 and 1997 were
dissatisfied with the examination they received.  Specifically,
veterans were dissatisfied with the thoroughness of the exam,
explanations regarding the need for certain tests, and feedback
explaining their test results and diagnosis.  Furthermore, about half
of the veterans responded that VA did not provide any of the
treatment they believed they needed for their Gulf War-related health
problems.  Similarly, VA's recent National Customer Feedback Center
survey of Gulf War veterans who received ambulatory care from fiscal
years 1992 through 1997 reported that almost one-third of Gulf War
veterans responding rated their VA care as fair to poor. 

Our work suggests the need for VA to develop and uniformly implement
a health care process that focuses on the special needs of Gulf War
veterans.  This process should provide for the integration of
diagnostic services, treatment of symptoms and illnesses, evaluation
of treatment effectiveness, and periodic reevaluation of those
veterans whose illnesses remain undiagnosed. 


   BACKGROUND
------------------------------------------------------------ Letter :2

VA's efforts to assist Gulf War veterans began in 1992 with the
implementation of the Persian Gulf Registry Health Examination
Program.  In 1993 and 1997, respectively, the Congress passed
legislation giving Gulf War veterans special eligibility (priority
care) for VA health care and allowing VA expanded authority to treat
veterans for health problems that may have resulted from their Gulf
War service.  In addition to assisting Gulf War veterans in gaining
entry into the continuum of VA health care services and providing
them with a free physical examination, the Registry database provides
a communications link with Gulf War veterans, a mechanism to
catalogue prominent symptoms at the time of their examination, and a
way to report exposures and diagnoses.  In 1995, VA modified the
Registry program by implementing the Uniform Case Assessment
Protocol, designed in conjunction with DOD and the National
Institutes of Health, to help guide physicians in the diagnosis of
symptoms reported by veterans who had served in the Gulf War.  VA
requires medical facilities having a Gulf War program to designate a
Registry physician to be responsible for implementing the protocol. 

The Registry physician is expected to follow VA's Uniform Case
Assessment Protocol, which prescribes a two-phase examination.  Phase
I requires Registry physicians to (1) obtain a detailed medical
history from the veteran, which includes collecting information on
exposure to environmental and biochemical hazards; (2) conduct a
physical examination; and (3) order basic laboratory tests.  Phase
II, which is to be undertaken if veterans still have debilitating
symptoms that are undiagnosed after phase I, includes additional
laboratory tests, medical consultations, and symptom-specific tests. 
If followed as written, the protocol gives the Registry physician
very little flexibility in deciding what tests should be performed. 
At the completion of these examinations, veterans are to receive
personal counseling about their examination results and need for
additional care.  In addition, the Registry physician is charged with
preparing and signing a follow-up letter explaining the results of
the Registry examination.  Veterans with continuing medical problems
who do not receive a diagnosis after phase II may be sent to one of
VA's four Persian Gulf Referral Centers\3 for additional testing and
evaluation. 

Registry physicians are also responsible for clinically managing the
treatment of Gulf War veterans and serving as their primary health
care provider unless another physician has been assigned.  VA's
implementing guidance acknowledges that the veterans' Registry
physician, or designee, plays a significant role in determining the
perceptions veterans have concerning the quality of VA health care
services and of their treatment by VA health care providers. 

VA's Environmental Agents Service is responsible for overseeing the
operation and implementation of the Registry program.  The program is
currently available to Gulf War veterans at 162 VA medical centers
and 50 outpatient clinics nationwide, including Guam, the
Philippines, and Puerto Rico. 


--------------------
\3 Persian Gulf Referral Centers are located in Birmingham, Ala.;
Houston, Tex.; West Los Angeles, Calif.; and Washington, D.C. 


   ESTIMATING THE NUMBER OF
   VETERANS SUFFERING FROM GULF
   WAR-RELATED ILLNESSES REMAINS
   PROBLEMATIC
------------------------------------------------------------ Letter :3

While it is widely accepted that almost 700,000 U.S.  service members
took part in the Gulf War from August 2, 1990, to July 31, 1991,
estimating how many of these veterans suffer from illnesses related
to their service in the Gulf region is much more problematic. 
Although there are certain symptoms that are associated with Gulf War
veterans who are ill, there are currently no case definitions\4 for
Gulf War illnesses in use by VA.  Veterans may have multiple symptoms
or only a few, with no particular pattern of association.  Past data
collection efforts have been too limited to provide a case
definition.  In addition, federally supported research projects and
Gulf War Registry programs have generally failed to study the
conjunction of multiple symptoms in individual veterans.\5 Further,
VA's Under Secretary for Health stated that while the Registry's
record of veterans' symptoms, diagnoses, and exposures makes it
valuable for health surveillance purposes, the voluntary,
self-selected nature of the database means that the exposures,
illnesses, and health profiles of those in the Registry cannot be
generalized to represent those of all Gulf War veterans. 
Consequently, only a rough estimate of those potentially suffering
from Gulf-related illnesses is possible on the basis of data that
report numbers of Gulf War veterans who received services for health
complaints of any type. 

To obtain a general sense of how many veterans may have suffered
adverse health effects as a result of their Gulf War service, we
requested information from several VA and DOD health care program
databases.  We found, however, that while these databases did report
on the number of Gulf War veterans receiving certain health care
services, they did not indicate whether these services were provided
for Gulf War-related conditions.  For example, VA reports that over
68,000 Gulf War veterans have participated in its Persian Gulf War
Registry program by receiving the Registry examination and being
included in the Registry database.  However, about 12 percent of
these veterans reported no adverse health problems as a result of
their Gulf War service.  According to the Under Secretary for Health,
these veterans wished to participate in the examination only because
they were concerned that their future health might be affected as a
consequence of their service in the Gulf War. 

VA also reports that more than 22,000 Gulf War veterans have been
hospitalized, about 221,000 veterans have made outpatient visits to
VA facilities, and approximately 83,000 veterans have been counseled
in Vet Centers\6 since the war.  Like VA's Registry data, however,
there is no indication of how many of these veterans suffer from
illnesses that actually resulted from their Gulf War experience. 

DOD reports that about 33,000 service members have participated in
its Registry examination program but, like VA, does not have
information that would definitively link the service members'
exposure history to their health problems.  Combined, VA and DOD
report that over 100,000 Gulf War veterans have requested a Registry
examination. 


--------------------
\4 "Case definitions" are classifications of symptoms into one or
more distinct illnesses. 

\5 Gulf War Illnesses:  Improved Monitoring of Clinical Progress and
Reexamination of Research Emphasis Are Needed (GAO/NSIAD-97-163, June
23, 1997), p.  52. 

\6 Vet Centers were initially established to assist Vietnam-era
veterans in the transition to postwar civilian life.  They are now
authorized to serve all veterans who may be suffering from
readjustment problems that interfere with interpersonal
relationships, jobs, educational performance, or their overall
ability to cope with daily life. 


   VA NOT FULLY MEETING THE HEALTH
   CARE NEEDS OF GULF WAR VETERANS
------------------------------------------------------------ Letter :4

Although VA has a program in place to help guide physicians in the
diagnosis and treatment of Gulf War veterans, this program has not
been fully developed and implemented to effectively meet their health
care needs.  Specifically, VA's diagnostic protocol is not being
consistently implemented, and VA referral centers are being
underutilized.  As a result, some veterans may not be receiving a
clearly defined diagnosis for their symptoms.  Communication between
physicians and veterans has also been less than satisfactory. 
Mandated personal counseling of veterans often does not occur, and
form letters that are sent regarding examination results are not
always clear and understandable. 

Health care that incorporates diagnosis, treatment, and follow-up is
also not well coordinated for Gulf War veterans.  Instead, Gulf War
veterans are typically referred to one of several primary care teams
or physicians who are not always familiar with the symptoms commonly
reported by Gulf War veterans.  Moreover, VA does not effectively
monitor the clinical progress of Gulf War veterans and thus has no
way of knowing whether these veterans are getting better as a result
of the care provided. 


      REGISTRY EXAMINATION
      PROTOCOL INCONSISTENTLY
      IMPLEMENTED
---------------------------------------------------------- Letter :4.1

Our reviews of Gulf War veterans' medical records, observation of
program operations during site visits, and discussions with program
officials, including physicians, showed that VA's Registry
examination protocol is not being consistently implemented in the
field.  For example, our review of veteran's medical records revealed
that at two of the six locations we visited the Registry physicians
often did not review the results of the examination performed by the
physician's assistants or nurse practitioners, as required by the
Registry protocol.  Moreover, while the protocol mandates that
disabled veterans without a clearly defined diagnosis are to receive
additional baseline laboratory tests and consultations, these tests
and consultations were not typically provided in the facilities we
visited.\7 Our review of 110 veterans' medical records indicated
that, in 45 cases, veterans received no, or minimal, symptom-specific
testing for unresolved complaints or undiagnosed symptoms. 

Furthermore, veterans suffering from undiagnosed illnesses were
rarely evaluated in VA's referral centers.  Of the approximately
12,500 cases of veterans reported as having health complaints but no
medical diagnosis,\8 only about 500 have been evaluated at a referral
center.  Of the 110 medical records we reviewed, including those
records for veterans with symptoms for whom no diagnosis was provided
(24) and those with undiagnosed or unexplained illnesses (30), only 1
record indicated that the veteran was sent to a referral center for
evaluation. 

While VA central office officials told us that some medical centers
are now capable of conducting the more detailed diagnostic tests and
analyses typically offered at the referral centers, we found little
evidence at the sites we visited that this is taking place.  For
example, at one full-service medical center we visited, 14 of the 20
cases we reviewed received no diagnosis and 17 received very little,
if any, testing.  Veterans we spoke with who received care from this
facility indicated that they were extremely frustrated and believed
that they were not getting adequate testing for their ailments. 

Some veterans told us that the examination they received seemed too
superficial to fully evaluate the complex symptoms they were
experiencing.  According to a VA program official, health care
providers reported that they spend, on average, about 1 hour to
perform each registry examination.\9 In addition, 24 percent of the
records we reviewed (26 of 110) indicated that the diagnoses reached
were essentially restatements of the veterans' symptoms.  Of these
26, only 11 received symptom-specific treatment or follow-up and
referral. 

Several of the physicians we interviewed believed they should have
the flexibility to use their own clinical judgment in determining
which tests are necessary to establish a diagnosis and treatment
plan.  One VA facility official stated that some physicians do not
know that phase II tests are required.  One physician stated that a
good physician should, in most cases, be able to diagnose a veteran's
symptoms without using the more complex battery of tests mandated by
the protocol.  We were told that some of the phase II
symptom-specific tests are invasive procedures that could have
serious side effects and, unless the tests are specifically needed,
they should not be given routinely just because a veteran has
symptoms.  Other physicians resisted prescribing some phase II tests
because of the associated costs.  Furthermore, some physicians told
us that they believe there are no physical bases for the symptoms
Gulf War veterans are experiencing and that these symptoms are often
psychologically based and not very serious.  According to the
Assistant Chief Medical Director responsible for the Registry
program, Registry physicians are expected to follow the diagnostic
protocol as laid out in program guidance.  She added that program
guidance is designed to direct physicians' behaviors, not necessarily
their attitudes.  She told us, however, that the unsympathetic
attitudes displayed by some physicians toward Gulf War veterans is
inexcusable and cannot be tolerated. 

Physicians and veterans in two of the six facilities we visited were
often frustrated with the process they were required to follow in
obtaining certain tests and consultations.  Physicians told us that
the lack of existing specialists in these facilities forced them to
refer patients to other VA medical facilities for needed services
even though this often resulted in increased travel for the veteran,
delays in scheduling appointments, and increased waiting times to
have consultations and receive test results.  Officials at both
facilities told us that coordination between VA medical facilities
affects not only Gulf War veterans but the entire veteran population. 


--------------------
\7 We found no evidence that the facilities we visted were applying
the criterion that veterans should have a disabling condition as a
prereuisite for receiving phase II evaluations. 

\8 Analysis of the Persian Gulf Registry data performed by VA's
Office of Public Health and Environmental Hazards shows that the
number of veterans who received no medical diagnosis ranges from
about 21 to 26 percent of those receiving the examination, depending
on when the examination was given. 

\9 Information on the time VA facilities report for completing the
Registry examination is self-reported and ranges from about 20
minutes to 4 hours.  Such wide differences may be explained not only
by variations in the actual time spent but also by differences in the
facilities' accounting for services provided. 


      PERSONAL COUNSELING RARELY
      TAKES PLACE
---------------------------------------------------------- Letter :4.2

According to VA guidance, counseling veterans about their examination
results is one of the key responsibilities of the Registry physician. 
While VA's guidance provides some criteria on what information should
be shared during counseling, the American Medical Association's
Physicians' Current Procedural Terminology\10 indicates that
counseling discussions with a patient and/or family may concern one
or more of the following areas:  (1) diagnostic results, impressions,
and/or recommended studies; (2) prognosis; (3) risks and benefits of
management (treatment) options; (4) instructions for treatment or
follow-up; (5) importance of compliance with chosen treatment; (6)
risk-factor reduction; and (7) patient and family education. 

We found that personal counseling between veterans and their
physicians often does not take place.  For example, veterans we spoke
with indicated that personal counseling is generally not provided on
the results of the Registry exam.  This is true for veterans who
receive a diagnosis as well as for those who do not.  Our review of
110 veterans' medical records revealed that only 39 records, or 35
percent, contained physician documentation of one-to-one counseling
about examination results and a discussion of a proposed plan of
care.  All 39 records were from one facility. 

VA medical staff, as well as veterans we talked with, stated that
feedback on examination results is typically provided through a form
letter.  The letter generally states the results of laboratory tests
and provides a diagnosis if one was reached.  Some form letters sent
to veterans at the completion of the examination generated
considerable anger among Gulf War veterans.  These veterans
interpreted the letters to mean that since their test results came
back normal, the physicians believed that either there was nothing
medically wrong with them or their conditions were not related to
their service in the Gulf.  Furthermore, at one of the facilities we
visited, we were told that counseling letters for more than half of
the cases we reviewed were sent to the veterans without incorporating
the results of all diagnostic tests. 


--------------------
\10 The Physicians' Current Procedural Terminology (Chicago, Ill.: 
American Medical Association, 1998) provides uniform language to
describe medical, surgical, and diagnostic services and thereby
allows effective communication among physicians, patients, and third
parties. 


      TREATMENT PROVIDED TO GULF
      WAR VETERANS OFTEN LACKS
      CONTINUITY AND COORDINATION
---------------------------------------------------------- Letter :4.3

VA program documentation clearly recognizes the need for continuous
and coordinated patient care and the benefits of case management\11
as a routine clinical strategy.  For example, VA's Gulf War guidance
states that Registry physicians play a key role in providing veterans
with the Registry examination and necessary treatment, where
medically indicated.  Reinforcing the need for continuous coordinated
care, VA's Under Secretary for Health in an August 21, 1997,
information letter on Gulf War Registry health examinations stated
that: 

     "Gulf War veterans with complex medical conditions may require
     frequent medical follow-up by their primary care teams and
     various other health care providers.  Utilizing case management
     techniques to coordinate health care services for Gulf War
     veterans with complex and difficult to manage conditions will
     improve both treatment effectiveness and patient satisfaction."

In September 1997, VA released an educational video on the use of
case management as a tool to improve quality of care in medical
centers throughout the VA system.  The video cited the Birmingham VA
Medical Center's program of case management, which offers continuing
and coordinated care for Persian Gulf veterans, as a noteworthy
model.  In response to a congressional mandate, VA has also recently
initiated demonstration projects to test health care models that
incorporate approaches such as case managers and specialized
clinics.\12

Based on our work, we found that continuous coordinated care was
provided at two of the six facilities we visited through the efforts
of an individual Registry physician and clinical staff members
serving Gulf War veterans.  For example, at one facility, veterans
have the option of receiving treatment at a Persian Gulf Special
Program Clinic.  Although it operates only on Tuesdays and Fridays,
the clinic allows veterans to receive primary care from medical staff
experienced with Gulf War veterans and their concerns.  Veterans are
still referred to hospital specialists as necessary, but
responsibility for tracking patients' overall medical care is
assigned to the Persian Gulf clinic's case manager, who is supervised
by the Persian Gulf Registry physician.  The case manager is a
registered nurse who serves as an advocate for veterans and
facilitates communications among patients, their families, and the
medical staff.  The clinic staff also interacts regularly with the
Persian Gulf Advisory Board, a local group of Persian Gulf veterans
who meet weekly at the VA medical center to discuss specific
concerns.  Veterans we spoke with were pleased with the clinic and
supported its continued operation.  They believed that it reflects a
VA commitment to take seriously the health complaints of Gulf War
veterans.  They also believed that the clinic gives veterans access
to physicians who understand and care about the special needs of Gulf
War veterans and their families.  In addition, veterans we talked
with who use this facility indicated a high level of satisfaction
with the care they received. 

At the second facility, the Registry physician served as the
veterans' primary care physician.  This physician ordered all
necessary consults and scheduled follow-up visits for Gulf War
patients.  He also tracked veterans' visits and documented their
environmental exposure histories.  Veterans at this facility had a
clear point of contact whenever they had questions or concerns about
their treatment.  Veterans we spoke with told us that they were very
satisfied with the treatment they received and were extremely
complimentary of the care and concern shown by the Registry
physician. 

In contrast, at four of the six facilities we visited, we observed
that there was very little clinical continuity or coordination among
medical professionals during the diagnostic and treatment phases of
care provided to Gulf War veterans.  Specifically, at these four
facilities we found that veterans with symptoms were not always sent
for treatment and follow-up care and when they did get treatment they
were assigned to primary care teams who treat the general hospital
population.  Furthermore, some physicians told us that clinical
information obtained during the Registry examination is not always
forwarded to or used by primary care physicians.  As a result, the
physicians treating these veterans may not be aware of, or responsive
to, their unique experiences and symptoms.  Many of the veterans we
spoke with who were treated for their symptoms at these four
facilities told us that they believed their treatment was
ineffective.  In fact, several veterans believed their medication
made them feel worse and stopped using it.  Primary care physicians
we spoke with acknowledged that greater continuity between the
diagnostic and treatment process would benefit both the physician and
the veteran. 

In February 1998, VA's Under Secretary for Health said in testimony
before the House Committee on Veterans' Affairs that a case
management approach intended to improve services to Persian Gulf
veterans with complex medical problems had been implemented in 20 of
VA's 162 medical centers that have a Persian Gulf Registry Health
Examination Program.  To determine the specific focus and nature of
the case management approaches being utilized, we contacted each of
the 20 facilities\13 identified by VA.  Based on our work, we found
that provision of continuous coordinated care for Persian Gulf
veterans was in place at 8, or 40 percent, of the 20 facilities. 
Specifically, these eight facilities provided Gulf War veterans with
coordinated and continuing clinical care through (1) a singular
Registry physician who conducts the examination and provides
follow-up treatment, (2) a primary care team dedicated to diagnosing
and treating Persian Gulf veterans, or (3) a coordinated effort
between the Registry physician who performs the examination and a
Persian Gulf primary care team that provides treatment.  Although
each facility's approach is slightly different, all eight provide
links between the diagnostic and treatment phases of care and are
focused on the special needs of Gulf War veterans. 

The remaining 12 facilities generally do not provide focused,
coordinated, or continuing care programs for Gulf War veterans other
than the care available to all veterans.  Two of these facilities
cited lack of staff as the reason for not attempting or continuing
Gulf War dedicated care.  For example, one of these two facilities
had a dedicated program but recently lost physician staff through
budget cuts and has not been able to restart its program. 

Increased continuity and coordination between the diagnosis and
treatment of Gulf War veterans offers several advantages. 

  -- It validates veteran concerns.  By having physicians clearly
     identified as responsible for the care and treatment of Gulf War
     veterans, these veterans are more confident that VA takes their
     complaints seriously. 

  -- It enhances opportunities for veterans to receive follow-up
     care.  After completing the Registry examination, veterans have
     an immediate point of contact should they have questions about
     their condition or require follow-up care. 

  -- It allows for increased awareness of VA's referral centers.  One
     of the primary care doctors we spoke with was not aware of the
     availability of VA referral centers for veterans with
     undiagnosed conditions or who do not respond to treatment.  If
     designated physicians were responsible for treatment of Gulf War
     veterans, greater awareness and use of the referral centers
     would likely take place. 

  -- It allows for a better treatment focus.  If designated
     physicians see the majority of Gulf War veterans, there is an
     increased likelihood of recognizing symptomatic and diagnostic
     patterns and developing an effective treatment program.  This
     approach may also lead to greater understanding of the nature
     and origin of Gulf War illnesses. 

Periodic reevaluation and management of patient symptoms, diagnosis,
and treatment is part of continuous and coordinated care.  This is
important for Persian Gulf veterans because of the need to ensure
that their diagnosis is correct, assess their progress, check for new
symptoms, and determine how they are responding to their treatment
plan. 

Although VA officials contend that Gulf War veterans are generally
being treated appropriately for the symptoms they display, they also
recognize the need to evaluate health outcomes and treatment
efficacy.  In February 5, 1998, testimony before the House Committee
on Veterans' Affairs, VA's Under Secretary for Health acknowledged
the need to establish mechanisms to evaluate Gulf War veterans'
clinical progress and identify effective treatment outcomes.  He
stated that VA and DOD have jointly asked the National Academy of
Sciences' IOM to provide advice and recommendations on how best to
develop and implement a methodology to collect and analyze this type
of information.  IOM is expected to issue its final report by June
1999. 


--------------------
\11 Case management is a patient-centered health care process
designed to increase the likelihood that patients receive easily
accessible, continuous, and high-quality health care through the
coordination and integration of services from all health care
providers. 

\12 Pursuant to the Veterans' Benefits Act of 1997 (P.L.  105-114,
Nov.  21, 1997), the Secretary of Veterans Affairs was required to
establish, by no later than July 1, 1998, up to 10 demonstration
projects to test new approaches to treating and improving the
satisfaction of Gulf War veterans who suffer from undiagnosed and
ill-defined conditions.  The demonstration projects were to
incorporate various approaches including the use of case managers,
specialized clinics, and multidisciplinary focused treatment.  The
law authorizes $5,000,000 to carry out this activity. 

\13 One of the facilities identified by VA (Birmingham) was also one
of the sites we visited during our review. 


   GULF WAR VETERANS OFTEN
   DISSATISFIED WITH VA HEALTH
   CARE
------------------------------------------------------------ Letter :5

Gulf War veterans are generally dissatisfied with the diagnostic care
and treatment they receive from VA for Gulf War-related symptoms. 
This sentiment was expressed in conversations and communications we
had with individuals and groups of Gulf War veterans, the results of
our nationwide survey of veterans who received the Persian Gulf
Registry health examination in calendar years 1996 and 1997, and
findings from VA's satisfaction survey of Gulf War veterans who
received outpatient care from fiscal year 1992 through 1997. 


      CONTACTS WITH GULF WAR
      VETERANS
---------------------------------------------------------- Letter :5.1

In both individual and group discussions and in correspondence, Gulf
War veterans indicated that while they greatly appreciated the
efforts of some individual doctors, they were often dissatisfied with
the overall health care they received from VA.  They cited delays in
getting the Registry examination; superficial examinations,
particularly when they were experiencing complex health problems; and
attitudes among health care professionals that implied veterans'
physical problems were "all in their heads." Veterans voiced
displeasure with the lack of personal counseling and the use of form
letters to explain the results of their examinations.  They added
that these form letters generated considerable anger because they
were often interpreted to mean that VA physicians did not believe
that veterans were suffering from any physical illness. 

Gulf War veterans also indicated that they clearly preferred the use
of specific physicians to treat their conditions.  Veterans noted
that designated physicians tended to be genuinely concerned about
their patients and more likely to take their health problems
seriously. 


      GAO'S NATIONWIDE SURVEY OF
      GULF WAR VETERANS
---------------------------------------------------------- Letter :5.2

Recognizing that those who initially communicated with us might be
more dissatisfied than the typical Gulf War veteran who receives
care, we designed and administered a mail-out questionnaire that we
sent to an adjusted random sample of 452 Gulf War veterans.\14 Our
sample was selected from 8,106 veterans who received VA's Registry
examination nationwide during calendar years 1996 and 1997.\15 Our
survey population was limited to 1996 and 1997 Registry participants
because this group received the examination after VA's most recent
update to the protocol, which was implemented as of January 1, 1996. 
The questionnaire collected information on veterans' satisfaction
with (1) the Persian Gulf Registry Health Examination, (2) the
treatment VA provided, and (3) sources of health care other than VA. 
Sixty-three percent, or 283, of the 452 veterans surveyed responded. 
Analyses of the characteristics of nonrespondents showed them to be
similar to those of respondents, thus increasing our confidence that
our survey results are representative of the views of the sampled
population. 


--------------------
\14 Our initial questionnaire mailing was to 477 Gulf War veterans. 
See app.  I for details. 

\15 This sample allows us to estimate population proportions with
sampling errors that do not exceed plus or minus 9 percentage points. 


         CHARACTERISTICS OF
         VETERANS IN OUR SURVEY
         POPULATION
-------------------------------------------------------- Letter :5.2.1

Based on our survey results, we estimate that the median age of
veterans in our survey was 33.  Seventy-six percent of them were no
longer active in the military service, while 12 percent were active
in a Reserve Unit, 10 percent were members of the National Guard, and
2 percent were active duty members of the U.S.  Armed Services.\16

Because the Persian Gulf Registry examination was first offered in
1992, we asked the veterans to indicate the reasons why they did not
receive the examination until 1996 or 1997.  One half reported that
they did not know that VA offered the examination.  Some also
reported that they waited to take the examination because they tried
to ignore their symptoms at first (40 percent), they believed their
problem would go away on its own (33 percent), or their symptoms
developed several years after the war was over (19 percent). 
Fourteen percent were treated by non-VA providers before they
requested VA health care. 

Almost 60 percent of the veterans rated their current health as
either poor or fair, while only about 10 percent rated their health
as excellent or very good.  In addition, over 80 percent indicated
that compared to their health before going to the Gulf, their health
now was worse.  About three-fourths of the veterans reported
experiencing health problems that they believed were caused by their
service in the Persian Gulf.  Table 1 shows the extent to which
various problems were reported by these veterans. 



                                Table 1
                
                  Health Problems Reported by Gulf War
                  Veterans Responding to GAO's Survey

                                                                Percen
                                                                  tage
                                                                report
                                                                   ing
                                                                proble
Health problem reported                                              m
--------------------------------------------------------------  ------
Muscle and joint pain                                               73
Memory loss/forgetfulness                                           69
Behavioral changes                                                  69
Tiredness                                                           68
Sleep disturbances                                                  60
Headaches                                                           54
Skin problems                                                       51
Diarrhea/gastrointestinal disorders                                 46
Shortness of breath                                                 40
----------------------------------------------------------------------

--------------------
\16 Active duty members of the U.S.  armed services may request a
health examination under VA's Uniform Case Assessment Protocol if
they are not comfortable requesting an examination under DOD's
Comprehensive Clinical Evaluation Program. 


         GULF WAR VETERANS'
         SATISFACTION
-------------------------------------------------------- Letter :5.2.2

Based on our survey results, we estimate that about half of the
veterans who received the Registry examination in 1996 and 1997 were
dissatisfied with that examination.  These veterans often expressed
dissatisfaction with specific aspects of VA's examination process. 
For example, they indicated that VA health providers are generally
not very good at communicating with their patients.  Specifically,
about half of these veterans indicated that they were dissatisfied
with their physicians' ability to diagnose their symptoms or explain
their diagnosis once one was reached.  Moreover, 42 percent were
dissatisfied with the explanations provided regarding the need for
specific tests, and about 50 percent were not satisfied with the
explanations given on the results of these tests.  Forty percent were
dissatisfied with the thoroughness of the examination. 

We estimate that about 45 percent of the veterans who received the
examination in 1996 and 1997 and who had health problems they
believed were caused by their Gulf War service received treatment
from VA.  However, about 41 percent of the veterans in our survey who
received treatment reported that, overall, they were dissatisfied
with the VA treatment services.  Forty-eight percent of the veterans
who received treatment told us that VA provided little or only some
of the treatment they believe they needed.  They also indicated that
they did not receive treatment they felt was necessary because VA
health providers did not believe they needed it (42 percent),
treatment was never scheduled (28 percent), or VA providers
determined that the veterans' health problems were not related to the
Gulf War (22 percent).  Even when treatment was provided, veterans
were often not satisfied.  About 50 percent of respondents who
received treatment indicated that they were dissatisfied with their
treatment outcomes. 

While many veterans we surveyed were dissatisfied with the overall
service they received from VA, they were satisfied with certain
aspects of the care that VA provided.  For example, over half of the
veterans we surveyed reported that they were satisfied with the
attention (52 percent) and respect (62 percent) paid to them by
individual VA physicians. 

Almost one half of the veterans in our survey indicated that they
sought health care from physicians and medical professionals outside
VA for problems they believe were caused by their service in the
Persian Gulf.  These veterans indicated that they sought care from
non-VA health providers because they did not realize that their
symptoms were related to their Gulf War service (36 percent), were
unaware that they were eligible for the VA services they needed (29
percent), they had to wait too long for a VA appointment (26
percent), and the VA facility was too far away (20 percent). 

Sixty-four percent of the respondents also submitted written comments
with their surveys.  These comments revealed that veterans who
receive the examination continue to question VA's willingness to
provide them with an adequate diagnosis and treatment for the
ailments they are experiencing.  For example, some veterans felt that
the Registry examination represented little more than a token effort
on the part of VA to pacify Gulf War veterans and that the
examination did not provide any meaningful answers to their health
problems.  Other veterans noted that VA in general, and some health
care providers in particular, failed to express a genuine concern for
the needs of Gulf War veterans.  Specifically, these veterans
reported that some VA health professionals did not take their
problems seriously; questioned their motives in requesting health
care services; treated them with disrespect and a lack of
sensitivity; and failed to provide adequate explanations of test
results, treatment, and follow-up care. 

In describing his experience with VA, one Gulf War veteran noted that
the doctor who examined him laughed at the problems associated with
his medical condition.  "He made me feel very embarrassed and
humiliated," the veteran stated, adding, "I feel his attitude was
anything but professional." The same veteran wrote that he felt the
person who examined him had already made up his mind that "there was
nothing to Persian Gulf Syndrome and that we (veterans) are either
just looking for compensation for nothing, or have just convinced
ourselves we're sick when we're not." This veteran also mentioned
that he did not believe that the physician took the Registry
examination seriously, performed it thoroughly, or provided adequate
treatment for the health problems that were identified. 

In describing his frustration with the Registry examination process,
another veteran wrote,

     "When I arrived I was given a list of questions.  I filled out
     the questionnaire and then was taken back to see the doctor.  I
     gave him the questionnaire; he looked it over and left the room. 
     I was then told by a nurse that I could go.  The doctor never
     asked me one question about my health or my problems.  I believe
     that the doctor could not have cared about my health."

A third veteran noted that after receiving the examination, he was
not notified of its results nor provided with a treatment plan to
address his health problems.  Another veteran wrote of similar
frustrations when trying to receive a diagnosis for his ailments. 
"[My rash is] easier to live with," he said, "than trying to get
someone [in VA] to find out what [is] wrong." A fifth veteran
indicated that, after receiving an examination, he expected to be
given treatment for his continuing health problems but was told by VA
personnel that his visit was "just [for the] Registry."

Other comments we received revealed that veterans are greatly
concerned about the impact their Gulf War service has had on the
health of their family members.  Specific health concerns they noted
include miscarriages, Down syndrome, spina bifida, immune system
deficiencies, and the premature deaths of young children. 

Although the majority of comments we received were critical, several
veterans reported satisfaction with the care they received from VA. 
Some veterans attributed their satisfaction to the efforts and
concerns displayed by individual physicians.  For example, one
veteran stated, "I have been treated very well at the VA center..  . 
.  The doctor I see always answers my questions and always asks what
problems I'm having."


      VA'S GULF WAR VETERAN
      SATISFACTION SURVEY
---------------------------------------------------------- Letter :5.3

VA's National Customer Feedback Center implemented a survey in 1997
to over 41,000 Gulf War veterans who had received care in a VA
outpatient facility during fiscal years 1992 through 1997.  Forty
percent of the veterans surveyed responded.  The survey found that
Gulf War era veterans are not satisfied with the continuity and
overall coordination of the care they received.  The VA survey also
showed that Gulf War veterans, as a group, are generally more
dissatisfied with VA care than VA's general outpatient population
that responded to a similar satisfaction survey at an earlier date. 
For example, while 62 percent of the general patient population
responded that the overall quality of care provided by VA was
excellent or very good, only 38 percent of Gulf War veterans
responded in this way.  Twenty-nine percent of the Gulf War veterans
rated the quality of VA's care as fair to poor.  Furthermore, while
54 percent of the general population reported they would definitely
choose to come to the same VA facility again, only 24 percent of Gulf
War veterans reported that they would. 


   IOM RECOMMENDS UNIFORM CARE FOR
   GULF WAR VETERANS
------------------------------------------------------------ Letter :6

In September 1996, VA requested the IOM to conduct an assessment of
the adequacy of its Uniform Case Assessment Protocol to address the
wide-ranging medical needs of Gulf War veterans and to review the
implementation of the protocol.  IOM's final report, issued in early
1998, represents another evaluation of VA's Gulf War program and
discusses several inconsistencies in the implementation of its
protocol.  For example, IOM reports that the diagnostic process
followed in some VA facilities does not adhere to the written
protocol.  While stating that it is encouraging that practitioners
exercise their clinical judgment to determine what consultations and
tests are best for an individual patient, IOM noted that such
deviation introduces inconsistency in evaluations across facilities
and variations in data recording and reporting.  These work against
achieving one of the purposes for which the system was developed--to
identify previously unrecognized diagnostic entities that could
explain the symptoms commonly reported by Gulf War veterans with
unexplained illnesses. 

The IOM report recognizes that while a great deal of time and effort
was expended to develop and implement VA's diagnostic program for
Gulf War veterans, new information and experiences are now available
that can be used to improve VA's protocol and its implementation. 
IOM concluded that the goal of implementing a uniform approach to the
diagnosis of Gulf War veterans' health problems is admirable and
should be encouraged but recommended that a more flexible diagnostic
process be adopted and that the protocol's phase I and phase II
designations be eliminated.  It also recommended that each VA
facility adopt and implement a process that would provide Gulf War
veterans with an initial evaluation; symptom-specific tests, as
needed; and referral for treatment when a diagnosis is reached.  If a
clear diagnosis cannot be reached, the patient would receive
additional evaluation and testing or be sent to a center for special
evaluation.  Gulf War patients who receive a diagnosis and are
referred for treatment would also receive follow-up evaluations under
IOM's proposal.  IOM suggested that a defined approach must be
established for those who remain undiagnosed or whose major symptoms
have not been accounted for, through periodic reevaluation,
treatment, or sending the patient to a referral center. 

The IOM report also noted that some patients could have diseases that
cannot be diagnosed at present because of limitations in scientific
understanding and diagnostic testing.  IOM's report stated that this
group of undiagnosed patients, some of whom are designated as having
an "unexplained illness," will contain a diversity of individuals who
will require monitoring and periodic reassessment.  IOM specifically
recommended that VA plan for and include periodic reevaluations of
these undiagnosed patients' needs.  VA currently has efforts under
way to evaluate the IOM recommendations and to develop plans to
implement them, where feasible. 


   CONCLUSIONS
------------------------------------------------------------ Letter :7

Although VA has made progress in some of its VA locations, it has not
fully implemented an integrated diagnostic and treatment program to
meet the health care needs of Gulf War veterans.  While VA has
developed a Registry protocol that provides an approach for
evaluating and diagnosing Gulf War veterans, that process is not
being consistently implemented in the field.  As a result, some
veterans may not receive a clearly defined diagnosis for their
symptoms, and others may be confused by the diagnostic process, thus
causing frustration and dissatisfaction. 

Furthermore, while VA recognizes that continuous and coordinated
patient care will improve both treatment effectiveness and patient
satisfaction, many VA facilities have not implemented such an
approach for Gulf War veterans.  An integrated process should focus
services on the needs of Gulf War veterans and should provide a case
management approach to the diagnosis, treatment, and periodic
reevaluation of their symptoms.  Such a focused and integrated
process is particularly important for Gulf War veterans because
baseline health and postdeployment status information is often not
available for this group of veterans.  An integrated health care
process that provides continuous and coordinated services for Gulf
War veterans would not only improve patient satisfaction but also
could assist VA health care providers in recognizing symptomatic and
diagnostic trends and help identify appropriate and effective
treatment options. 


   RECOMMENDATION
------------------------------------------------------------ Letter :8

We recommend that the Secretary of Veterans Affairs direct the Under
Secretary for Health to uniformly implement a health care process for
Gulf War veterans that provides for the coordination of

  -- diagnoses of illnesses,

  -- treatment of symptoms and illnesses,

  -- evaluation of treatment effectiveness, and

  -- periodic reevaluation of those veterans whose illnesses remain
     undiagnosed. 


   AGENCY COMMENTS AND OUR
   EVALUATION
------------------------------------------------------------ Letter :9

In commenting on a draft of this report, VA expressed general
agreement with our findings and conclusions and concurred with our
recommendation that it implement a more uniform, coordinated health
care process for Gulf War veterans.  VA further detailed its program
improvement strategies, which it believes will significantly enhance
program responsiveness to the needs of Gulf War veterans and ensure a
more integrated treatment process at all organizational levels.  VA
also mentioned that the timing of our review precluded the
observation of resulting improvements from these program improvement
strategies.  We believe that we have appropriately recognized
relevant initiatives in the body of our report and have noted that
many of the initiatives are preliminary or in the planning stage. 

In two instances, VA took issue with information contained in our
draft report.  First, VA asserted that our report concludes that
"specialized Gulf War clinics are the only effective means to provide
coordinated, quality health care." We disagree with this
characterization.  Our conclusions focus on the need for an
integrated health care process that "provides continuous and
coordinated services for Gulf War veterans" and does not identify
Gulf War clinics as our preferred model of care.  One of the examples
of coordinated care cited in our report resulted from the efforts of
an individual Registry physician who did not provide care through a
specialized Gulf War clinic.  As demonstrated by our discussion of
the six facilities we visited, we believe that coordinated, quality
care can be provided in a variety of settings and through various
approaches. 

Second, VA said that it believes our report misinterprets the
guidance provided for implementation of the phase II Registry
examination.  VA states that the phase II protocol should be used to
"evaluate veterans with debilitating unexplained illnesses, and not
for unexplained symptoms, as GAO states" in the background section of
the report.  We have made adjustments to the report as appropriate to
clarify VA's criteria for initiation of phase II evaluations.  The
full text of VA's comments is included in appendix II. 


---------------------------------------------------------- Letter :9.1

Copies of this report are being sent to the Secretary of Veterans
Affairs, other congressional committees, and interested parties.  We
will also make copies available to others upon request. 

Please contact me on (202) 512-7101 if you or your staff have any
questions or need additional assistance.  Major contributors to this
report included George Poindexter, Stuart Fleishman, Patricia Jones,
Jon Chasson, and Steve Morris. 

Stephen P.  Backhus
Director, Veterans' Affairs and
Military Health Care


SCOPE AND METHODOLOGY
=========================================================== Appendix I

Our review consisted primarily of four data collection efforts:  (1)
reviews of existing databases showing the number of veterans of the
Gulf War that VA and DOD report as potentially suffering from related
illnesses, (2) work performed at VA's central office and one Veterans
Integrated Service Network (VISN) office, (3) case studies at six VA
medical facilities including discussions with groups of Gulf War
veterans, and (4) implementation of a questionnaire sent to a
nationwide sample of veterans who received the Persian Gulf Registry
health examination. 


   REVIEW OF DATABASES
--------------------------------------------------------- Appendix I:1

We collected data on the number of veterans who received either some
type of VA health care service or who participated in either VA's or
DOD's Registry examination program.  With the exception of VA's
Persian Gulf Registry database, however, we did not address the
accuracy or reliability of either agency's databases.  Data on VA
medical center inpatient and outpatient services were taken from data
collected and reported by VA's Gulf War Information System, which,
according to VA officials, is the most reliable information available
on those services.  We also met with officials from VA's Systems
Division in Austin, Texas, to discuss the validity of the Persian
Gulf Registry Health Examination Program database. 


   DATA COLLECTION AT VA'S CENTRAL
   OFFICE AND VISN 7
--------------------------------------------------------- Appendix I:2

Our work in VA's central office in Washington, D.C., and VISN 7 in
Atlanta, Georgia, involved primarily the collection of program
descriptive material and summary data.  We interviewed officials from
the Veterans Health Administration (VHA), its Division of
Environmental Medicine and Public Health, the Environmental Agents
Service, and the VISN 7 office.  We collected and reviewed studies,
reports, program information, and data from these offices and
compared that information with observations made during visits to VA
medical facilities and information provided by the Gulf War veterans
who communicated with us.  We also reviewed testimony, legislation,
and reports by others, including the Presidential Advisory Committee
on Gulf War Veterans' Illnesses and the National Academy of Science's
Institute of Medicine (IOM). 


   CASE STUDIES
--------------------------------------------------------- Appendix I:3

We conducted case study site visits to VA medical facilities in six
locations--Albuquerque, New Mexico; Atlanta, Georgia; Birmingham,
Alabama; El Paso, Texas; Manchester, New Hampshire; and Washington,
D.C.  We also visited VA Persian Gulf referral centers in Birmingham,
Alabama, and Washington, D.C.  We selected these sites judgmentally
to include VA facilities that (1) were in different geographical
locations, (2) were varied in size and workload, (3) differed in
terms of having an onsite referral center, and (4) implemented their
Persian Gulf Registry Health Examination Program using different
approaches. 

During our site visits, we interviewed Registry program officials on
various aspects of program operations, reviewed samples of case
files, and discussed specific cases with program physicians.  At each
VA medical facility we visited, we randomly selected 10 to 40 medical
records/case files of program participants who had received a
Registry examination after January 1, 1996.  We reviewed a total of
110 medical records.  While these cases were selected randomly, they
are not a representative sample of each facility's total number of
Registry program participants. 

Through our case study file reviews and discussions with program
officials, we obtained detailed information on the types of
diagnostic and treatment services provided to Gulf War veterans at
each facility.  In addition, through our review of medical records,
we attempted to identify all efforts to provide continued,
coordinated care to veterans who suffer from complex medical problems
at the facilities we visited. 

We met with groups of Gulf War veterans served by each of the six VA
facilities we visited to collect information on their Gulf War
experiences, their past and present health status, and the types of
health care services they received from VA.  We inquired specifically
about their satisfaction with VA's Persian Gulf Registry examination
and the treatment they received for their symptoms.  In addition, we
asked them to fill out a questionnaire; however, their responses were
not part of our random nationwide survey. 

We also contacted the 20 VA medical centers that VA identified as
using case management to improve services to Gulf War veterans.  One
of the 20 centers was also one of our case study locations, and there
we discussed program issues with physicians and program personnel. 
At the 19 sites we did not visit, we talked with physicians and
program administrators by telephone to determine the extent to which
case management had been implemented and had contributed to
continuous and coordinated care for Gulf War veterans. 


   DISCUSSIONS WITH AND SURVEY OF
   GULF WAR VETERANS
--------------------------------------------------------- Appendix I:4

Gulf War veterans with whom we initially spoke often indicated that
they believed VA facilities failed to provide them with needed care
or that they were dissatisfied with the care provided by VA. 
Recognizing that those who were most unhappy might be the most likely
to contact us or to be critical when we talked with them, we designed
and administered a mail-out questionnaire.  We sent the questionnaire
to a nationwide random sample of Gulf War veterans who received VA's
Registry examination during 1996 and 1997.  These 2 years were chosen
because VA's most recent update to its protocol, which was intended
to make the examination more uniform across all VA facilities, was
implemented on January 1, 1996.  The questionnaire collected
information on the respondents' (1) satisfaction with the Persian
Gulf Registry examination, (2) satisfaction with treatment VA
provided, and (3) sources of health care outside of VA. 

We selected a sample of 477 veterans from a universe of 8,106
veterans who received the Registry examination in 1996 and 1997.  To
these veterans we mailed (1) a predelivery notification postcard
about 2 weeks before questionnaires were mailed and (2) an initial
mailing of the questionnaire with a cover letter describing the
nature of our survey effort.  Of the initial 477 questionnaires
mailed, about 100 were returned as nondeliverable.  In most cases we
were able to mail the questionnaire to a second address by using
forwarding addresses provided by the Post Office or addresses
provided by a secondary source.  Ultimately, 23 veterans in our
sample did not receive a questionnaire because of inadequate or
incorrect address information.  In addition, two questionnaires were
returned by family members who reported that the veterans were
deceased.  Therefore, our adjusted random sample mailing size was
452.  Other efforts used to improve the response rate included
sending a postcard reminder, 1 week after the initial questionnaire
mailing, to all veterans sampled and sending a second questionnaire
to all nonrespondents about 5 weeks after the initial mailing.  Two
hundred eighty-three usable questionnaires were returned. 
Consequently, the response rate for this survey (defined as the
number of usable questionnaires returned divided by the number of
questionnaires delivered) was 63 percent.  Our survey sample allowed
us to estimate population proportions with sampling errors that do
not exceed plus or minus 9 percentage points. 

Since failure to obtain a response from a sampled veteran could
affect the representativeness of the survey data, we conducted
analyses to assess the impact of nonresponse.  Using information
available in VA's Persian Gulf Registry database, we compared
respondents and nonrespondents using a variety of demographic and
medical characteristics, including whether or not the veteran
reported symptoms at the time the examination was administered and
self-reported assessments of functional impairments and general
health.  We found no relationship between any of these
characteristics and whether or not the veteran responded to our
questionnaire.  On this basis, we believe that respondents did not
differ significantly from nonrespondents and, therefore, are
representative of the population sampled. 

Throughout our review, veterans voluntarily contacted us by
telephone, e-mail, and letter to discuss their experiences with
illnesses they believe are related to their Gulf War service and the
health care they have received from VA.  We documented these contacts
and used the veterans' comments in our report where appropriate. 




(See figure in printed edition.)Appendix II
COMMENTS FROM THE DEPARTMENT OF
VETERANS AFFAIRS
=========================================================== Appendix I



(See figure in printed edition.)



(See figure in printed edition.)



(See figure in printed edition.)



(See figure in printed edition.)



(See figure in printed edition.)



(See figure in printed edition.)

RELATED GAO PRODUCTS

VA Health Care:  Preliminary Observations on Medical Care Provided to
Persian Gulf Veterans (GAO/HEHS-98-139R, Apr.  20, 1998). 

VA Health Care:  Persian Gulf Dependents' Medical Exam Program
Ineffectively Carried Out (GAO/HEHS-98-108, Mar.  31, 1998). 

Gulf War Veterans:  Incidence of Tumors Cannot Be Reliably Determined
From Available Data (GAO/NSIAD-98-89, Mar.  3, 1998). 

Gulf War Illnesses:  Federal Research Strategy Needs Reexamination
(GAO/T-NSIAD-98-104, Feb.  24, 1998). 

Gulf War Illnesses:  Research, Clinical Monitoring, and Medical
Surveillance (GAO/T-NSIAD-98-88, Feb.  5, 1998). 

Gulf War Illnesses:  Public and Private Efforts Related to Exposures
of U.S.  Personnel to Chemical Agents (GAO/NSIAD-98-27, Oct.  15,
1997). 

Gulf War Illnesses:  Reexamination of Research Emphasis and Improved
Monitoring of Clinical Progress Needed (GAO/T-NSIAD-97-191, June 25,
1997). 

Gulf War Illnesses:  Enhanced Monitoring of Clinical Progress and of
Research Priorities Needed (GAO/T-NSIAD-97-190, June 24, 1997). 

Gulf War Illnesses:  Improved Monitoring of Clinical Progress and
Reexamination of Research Emphasis Are Needed (GAO/NSIAD-97-163, June
23, 1997). 

VA Health Care:  Observations on Medical Care Provided to Persian
Gulf Veterans (GAO/T-HEHS-97-158, June 19, 1997). 

Defense Health Care:  Medical Surveillance Improved Since Gulf War,
but Mixed Results in Bosnia (GAO/NSIAD-97-136, May 13, 1997). 

Operation Desert Storm:  Health Concerns of Selected Indiana Persian
Gulf War Veterans (GAO/HEHS-95-102, May 16, 1995). 

Operation Desert Storm:  Questions Remain on Possible Exposure to
Reproductive Toxicants (GAO/PEMD-94-30, Aug.  5, 1994). 


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