Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter.
Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.
Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.
OCR for page 167
Appendix N
Summary of Responses to Requests for Information
VA FACILITY RESPONSES TO UCAP
Protocol
Adequate 32: Additional Comments
ˇ At the time the protocol was established, it did serve the purpose. After
several years, however, the protocol becomes less efficient and comprehensive.
Particularly after completion of Phase I, there is rarely enough to assess and
complete the veteran's evaluation. More and more frequently I use Phase I and
II simultaneously to achieve the diagnostic work-up. These two phases should
be combined into one step.
. For female veterans, a laboratory hormonal profile and gynecology clinic
evaluation should be part of the initial work-up, not part of Phase II.
ˇ The Protocol is adequate but may be too inclusive. The initial exam
documentation on "appropriate" forms is time-consuming and numerous. Phase
II protocols require tests and procedures that would not all ordinarily be done on
every individual. The "minimum work-ups" listed for the specific symptoms
may be too invasive and in the global "risk-benefit ratio," have the potential to
be too risky for the veteran.
ˇ Recommending lumbar punctures for everyone with complaints of
headaches or memory loss seems a bit extreme.
167
OCR for page 168
168
ADEQUACY OF THE VA PERSL4N GULFREGISTRY AND UCAP
ˇ More emphasis should be placed on the formal psychosocial assessment
of veterans, especially in light of stress and its impact on an individual's medical
well-being.
ˇ Has lengthy paper work.
ˇ Need for a psychiatric exam or clinical psychology exam to be part of the
medical exam. There is also a need for a social work survey as part of the exam.
We need standardized questions from headquarters.
ˇ Consider incorporating one or more psychological screens in the protocol
exam.
ˇ Include some type of psychological screening.
~ Need some means of quantifying the symptomatology because frequently
patients have multiple complaints and all complaints are not equal either in
severity or frequency of occurrence.
ˇ The protocol system should facilitate the exchange of Information among
participating centers and physicians in a VISN in order to optimize clinical and
support decision making.
ˇ Lacks a detailed psychosocial assessment needed to thoroughly evaluate
this patient group.
ˇ For patients who have symptoms of chronic fatigue and/or sleep
disorders, a sleep study would be an additional evaluation that may be indicated.
ˇ Completion of the Phase II protocol is very time-intensive and the
diagnoses, or lack thereof, seem to be of questionable value.
ˇ The clinical protocol addresses complaints and diagnostics but not
detailed history. Perhaps allowing the physician to attach pertinent history
wherever applicable would help to assess the patient's concerns even though
there is no diagnosis.
examiner.
ˇ The protocol does provide a general overview and resource to the
ˇ Comprehensive and helpful. Should continue to be used without major
changes. The weakness is its limitations for the diagnosis of the nature and
causers) of the illnesses or symptoms presented. The routine examination and
tests offered by this protocol are regularly found to be negative and the
evaluations by specialists are diagnostically inconclusive most of the time. The
diagnosis of chemically induced diseases involves different tests and
approaches not available for routine medical practice. They should not be
added to the current protocol because more disadvantages than benefits would
result. But we need to speed up the research work on Gulf War veterans'
illnesses.
. It would be helpful to develop algorithms to guide clinicians in ordering
tests/consults to assess symptoms/conditions that are identified in the evaluation.
ˇ For a small minority of patients complaining of damage to the immune
system, a protocol for a more detailed assessment of their immune systems
would be time-saving.
OCR for page 169
APPENDIX N
169
ˇ Protocol would be excessive if one were to follow it verbatim rather than
individualize it.
ˇ Endoscopies and biopsies of the gastrointestinal tract and biopsies of the
skin lesions of the veterans with disorders of these organ systems are underused.
ˇ It is necessary to develop a protocol for required neuropsychiatric testing
to evaluate the rate of change and frequent claims of decreased mental function.
ˇ It would be useful to add psychological testing to the routine protocol.
The routine chest X-ray is worthless and should be deleted.
ˇ The protocol lacks specificity in several areas.
ˇ Adherence to the protocol is time-consuming for the physician as well as
the patient who must make return visits to various clinics.
ˇMany veterans are reluctant to discuss classified information on the
questionnaire. Need an executive order declassifying all information related to
toxic, biological, and/or chemical warfare agent exposure.
Implementation
Implemented and administered well 28: Additional Comments
ˇA common difficulty is the long waiting period for consultations or
procedures. Maybe there should be an established, required time frame for all
requested consults, special tests, and/or procedures, taking into account the
difference in facilities.
ˇ Have experienced some problems with timely consults from specialists.
Despite the fact that the consultants have been given the required protocol, they
generally use their own expertise and perform tests and procedures they think
are required given the symptoms.
ˇA main concern relates to assessment by specialty clinics, such as
neurology, which is common because of the vast number of headaches and
memory loss complaints. Veterans must be referred to a distant facility (300
miles) to receive these evaluations. If the veteran is well enough to work, his or
her employment interferes with keeping the appointment. There needs to be
better access. For young patients with complicated problems requiring
rheumatology, gastroenterology, or neurology follow-up, they just cannot keep
follow-up appointments so far away. Possible solutions to these problems
include offering local fee-based specialty clinic, or bringing specialists from the
larger medical facilities for periodic clinics one day a month or one day every
other month.
. A strength is that the Registry allows for self referral- any veteran, ill or
not, can obtain examination and treatment.
ˇ Need a fast track approach. At the first encounter the new POW (Persian
Gulf War) vet should receive information about the Registry exam and
OCR for page 170
170
ADEQUACYOF THE VA PERSIAN GULFREGISTRYAND UCAP
enrollment in VA's primary care clinic for potential treatment and follow-up, as
well as a substantiation of claim for C&P exam purposes with the name of the
veteran service officer to assist the vet. Follow-up should be through letters and
newsletters.
ˇ POW veterans should not be treated as intrinsically different from all our
other veterans who may have special needs in the VA system.
ˇEach VA center should identify and employ experienced, competent
contact persons and physicians to serve as Environmental POW Special
Program Physicians and Advisors.
ˇ The Registry exam should be performed ASAP before or after separation
or deactivation of the individual from active duty. Should be performed by
experienced personnel at a local level.
ˇ Believe a strength of our facility is that we have established one clinic that
is solely responsible for the evaluation of PG veterans who wish to be enrolled
on the Registry.
ˇ A large number of VA medical centers do not have a sleep lab to conduct
sleep studies (polysomnography). Obtaining this test from the private sector is
expensive, time-consuming, and delays the evaluation process. For most small-
to medium-sized VAs, however, it is not cost-effective to have a sleep lab in-
house. No easy solution has been identified.
ˇ Experience a number of no-shows because a majority of vets seeking
evaluations maintain full-t~me jobs and may live some distance from the
medical center.
ˇ Foster the idea that the PG exam is not merely one evaluation, rather it is
a series of evaluations until the various diagnoses are established or discounted
and other conclusions can be drawn. This may require a managed care approach
where designated providers would conduct both the initial and follow-up
evaluations and draw on subspecialty support when indicated.
ˇ Promulgate and support the option of hospitalization in complex or
geographically remote cases.
ˇ There are great problems with the time and availability of specialized
personnel required to conduct multiple tests and procedures before a condition
can legitimately be considered "undiagnosed." Only rarely can this be accom-
plished with a single visit. For centers that serve an extensive geographic area,
this raises the question of hospitalization.
ˇ Have developed a worksheet to keep track of where patients are in the
process and the results of their evaluations.
ˇ Phase II has not been well implemented due to a lack of clear guidelines
regarding its objectives and use. Practically speaking, to involve a large group
of diverse specialists in an individual patient's care is disjointed and
unproductive as the Primary Care Model is being implemented in health care.
OCR for page 171
APPENDIX N
171
ˇ Because of an increase in the number of vets seeking exams and the time
it takes to adequately accomplish these exams, need a full-time physician to
perform PG and other environmental contaminant examinations.
ˇ From the clinical perspective, our physicians conducting the PG exams
feel that there are frequently changing directives for conducting these exams.
ˇ Delays have been experienced in the timeliness with which consultations
are obtained.
ˇ We have had difficulties getting the affiliated medical school to complete
examinations in a timely and appropriate manner. Of particular difficulty is
their problem with the concept of"undiagnosed illness."
ˇ More feedback to the examining physician after the exams are completed
would be beneficial. It would allow the physician to be appraised as to any
improvements he or she could make such as the acceptability of diagnosis.
ˇ Have fully implemented the protocol.
ˇ Because of evaluations in numerous specialty clinics, a great deal of effort
must be expended to coordinate the medical information. It would be good to
have the generalist staff facilitate the overview of all the specialist exams.
ˇ Gulf War veteran satisfaction at our facility is high because the VRP is in
charge of both the Registry and the return and follow-up clinics. The VRP
dedicates unlimited time for these veterans. Because he or she is responsible for
both the exams and the follow-up care, there is continuity of care and
availability of medical assistance when needed.
ˇ Current system is only limited by waiting times due to a lack of examiners
and primary care providers.
ˇ I believe the implementation is successful because there is a specific
interdisciplinary clinic established to specifically capture this population of
veterans. Concentrating PG veterans in one clinic with a specific group of
providers establishes a "uniform approach to their unique concerns."
ˇ Since not all services are available at our facility (e.g., neurology,
orthopedics, MRI), the waiting period for an appointment at another VA facility
is several months.
ˇ There are limitations because of the availability of medical specialists and
the need to refer to another VA facility.
Referral Centers
ˇ There are long delays in acceptance of patients to referral centers. Several
of our patients had to wait 9 months. Also, physician's assistants are the
primary care givers in at least one referral center, and the veterans interpret this
as a lessening in priority of the program.
OCR for page 172
172
ADEQUACYOFTHEVAPERSIANGULFREGISTRYAND UCAP
ˇReferral centers should take a leadership role in integrating and
communicating information among their local and VISN areas to standardize,
process, and optimize service and research efforts.
ˇ There is a problem accessing regional centers to discuss possible patient
referrals. Calls to the telephone numbers provided frequently are not answered
and there is no provision for leaving messages.
ˇ It is very difficult to get through to the tertiary care centers for referral.
They rarely get back to us, and it is very difficult to obtain copies of their
examination results. This is a major annoyance to myself and my patients.
ˇ There is a delay in the communication between the referral center and the
clinic making the referral. This is due to both delay in the completion and
mailing of reports from the referral center and to completed reports being
received but placed in a record unbeknownst to the primary care physician.
ˇ The consultation process with our research facility in Houston does not
provide easy consultation with physicians knowledgeable in the latest aspects
and research regarding Gulf War illnesses.
ˇ Need some form of communication from the physicians and staff of the
Stage 2 hospitals about their findings and diagnoses.
ˇ It would help the Registry physicians to have the name of the contact
person of the referral centers so that certain difficult cases could be referred in a
timely manner.
ˇ Referrals are tedious and difficult to accomplish with facilities far away.
Consultant information is not always easily accessible for follow-up after
referral. Better access to consultations and special tests should be provided and
reports kept in a file separate from the general medical record. Would
recommend a fast track to these centers for appropriately selected veterans.
ˇ While the Phase I protocol is adequate for the vast majority of patients
seen, about 5°/0 require further evaluation by specialists at another facility. This
presents several problems. First, inconvenience to the veteran, who is required
to devote 2 to 4 days for travel and exams/tests. Another is the poor com-
munication between the referral centers and the referring facilities. There is
often no written response from the specialists or, if there is one, its receipt is
greatly delayed.
. Patients who go to the referral centers must remain for a great deal of
time. This concern was expressed primarily by those veterans who are
employed and have families.
Other Recommendations
ˇ Following the veteran's PG exam, an appointment should be made with
his other primary care physician and a list of recommendations should be given
to that physician for a workup of the veteran's complaints. If the workup does
OCR for page 173
APPENDIX N
173
not uncover the cause of his or her complaint, the veteran should be referred to
the PG physician for further evaluation and/or referral to one of the four referral
centers.
ˇ There needs to be better coordination between the Registry exam and the
C&P exam to avoid duplication. Should any additional findings be uncovered
during the C&P exam, they should be forwarded to the v~t`,r~n'~ nrimar~r bore
physician.
~BIAS ~ ~ L~l ~1 V ~1 1lll~ ~= ~
ˇ One physician in each facility should be responsible for the PG Reoistrv
for consistent. good aualitv evaluatinn.s
_ _ O. ~ v-^ ~
~ ~ O ~ J - , ~ ~v.
ˇ Need a methodology for screening-out veterans who are simply voicing
symptoms that they have read about.
ˇ No changes needed.
ˇ Need quarterly or semi-annual review/recommendations on diagnosis and
follow-up.
ˇ Tests should be specified up front.
ˇ Residents who are performing the PG evaluations need to be closely
supervised by their attending physicians and need to be educated about possible
exposures and outcomes.
ˇ Recommendations for lab tests and X-rays should have studies completed
at referral centers rather than at the parent facility so consultants might benefit
from results and provide timely conclusions and recommendation.
ˇ The physician and clerk assigned to the Persian Gulf program should be
kept as a team to better address issues. At the completion of all tests and
consults, the physician should review the chart for any possible omissions.
Education
ˇ Need "in-service" training for primary health care providers and specialty
clinics within the VAMC.
ˇ An inclusive discussion, made available to VRPs, of the "alternative"
explanations and proposed treatments and VA's resn`,n~e ~n them nrnnr`~o
would be helpful.
ˇ There should be educational programs geared to the veterans and
broadcast on local television to bring them up to date on PG health care issues.
ˇ Education of the primary care providers in the treatment of such
conditions as chronic pain, headaches, fibromyalgia, chronic fatigue syndrome,
irritable bowel syndrome, and rashes would be of great benefit.
. Continuing Medical Education programs should be developed for periodic
updates, as well as interfaces with new VA providers in a cooperative
educational manner.
ˇ The most important factor in the care of these patients is the role of
education of the vets as to what is known about the exposures at this point in
r ~.~v_ in Vend
OCR for page 174
174
ADEQUACYOFTHEVAPERSIANGULFREGISTRYANDUCAP
time, and reassurance that research has not shown evidence of a communicable
disease or an increase in the birth defect rate. An open, informative, and
compassionate attitude in dealing with these patients helps to allay fears and
makes for better rapport with the patients and overall better outcome.
ˇ Education provided to the environmental physicians through the annual
national conferences, video conferences, teleconferences, and the distribution of
new research and development materials has been very beneficial. However,
access to this kind of information for the veteran appears to be very limited. It
would be beneficial to develop an educational system utilizing newsletters,
brochures, etc. to continually educate the vets regarding new developments and
research studies.
ˇ Many channels exist for the PG Registry physician to be educated about
new developments, but not for the specialists who see PG vets on consult. They
need education too.
ˇOutreach efforts should be enhanced through the VISN level by
coordination among the veteran service officer, and National Guard, Reserve
and active veterans' service organizations, as well as community service and
employers.
ˇ We have a very high no-show rate among PG vets and assume one of the
reasons is because the vets are unable to get time off from work to come in for
the exam which takes two half-day sessions. Employers must be better
educated.
ˇ Need information on the epidemiology of ieishmaniasis, and the
interaction, both hypothetically and practically, of cholinesterase inhibitors and
insecticides and their potential for lasting neurological complications. Need a
list and description of ongoing research relevant to the medical issues of PG
illness~es) and abstracts on published articles.
ˇ While the recent national meeting was excellent, the veterans and the
general public have not been properly informed or prepared. The only infor-
mation most of them have access to is via the news media, which is spotty,
inadequate, and often distorted.
ˇ Need to continue annual 2-day conferences. Also need to train clerical
staff on the importance of clear documentation and what information is needed
to assist staff in headquarters. One unified and indexed handbook to assist the
clerical staff processing PG exams would be beneficial.
ˇ Training should be continued on the clinical treatment and ongoing re-
search studies of Persian Gulf veterans. On a local level, ongoing outreach is
needed to educate agencies and vets on the registry program and other VA
services.
. Veterans need to understand the purpose of the protocol exam and the
Registry and the fact that it has nothing to do with claims of disability or
compensation determination.
OCR for page 175
APPENDIX N
175
ˇ Need short video or short closed-circuit presentation that goes over the
Registry form to make sure we are complying with everything that needs to be
done. It would be helpful to have information on such things as depleted
uranium, microplasma, etc. to be able to respond to veterans who bring up these
topics.
ˇ Education for both providers and veterans could be improved. It would
be helpful to have pamphlets available for veteran and service officer education
on the purpose of the Registry. Publications and articles of interest to both
veterans and providers need to be available in the treatment areas.
ˇProviders of primary care need to be better informed as to new
information that would assist them in treating PG vets. An annual presentation
coordinated by the PG physician at each station would be a valuable
contribution.
ˇContinue education via yearly national conference, live satellite
conferences, and regular relay of current publications/articles.
ˇ The physician and clerk assigned to the Persian Gulf program should be
properly trained.
ˇVeterans need to be better informed about the workup and referral
process, that is, only unexplained cases are referred to Houston facility.
ˇ Need a "fact sheet" published quarterly that separates facts from media
reporting.
ˇ One way to alleviate concern may be to frequently communicate with all
veterans via newsletter so that they will not be confused by the conflicting
reports in the press.
ˇ The VA could have seminars that would keep physicians who do the
Registry exams abreast of new developments.
ˇ After 5 years of the program, it may be time to compile a current manual
for the program with information such as the purpose of and eligibility for the
program, exam protocols with lab and X-ray requirements, coding sheets, and
sample follow-up letters.
ˇ Outreach programs or new letters should provide the results of studies that
are reassuring, such as the information regarding birth defects.
. VA personnel turnover creates difficulties for maintaining a well-
informed staff that understands PG issues and eligibility.
ˇ Efforts to provide education and outreach are fine.
. Persian Gulf program in Long Beach was excellent.
. Need medical education on medical and industrial toxicology given the
concerns and question of PG veterans relating to exposures to various chemical
agents.
ˇ Providers and support staff need up-to-date information on the latest
developments in Persian Gulf illnesses. The continuing medical education
credit is good and needs to continue.
OCR for page 176
176
ADEQUACY OF THE VA PERSIAN GULF REGISTRY AND UCAP
ˇ Perhaps a brief training film or program similar to the one produced for
the ex-POW protocol program would be useful for orienting new staff.
ˇ Teleconferences and educational conferences have been extremely
beneficial in keeping providers aware of the current status of research and in
helping to defuse the multiple myths surrounding this complex problem.
ˇ Insufficient work has been done in educating providers other than the PG
providers about the clinical protocol and Gulf War health issues. The annual
conference on Gulf War health consequences is excellent. Unfortunately, access
is limited. The organization and planning of conferences and workshops to be
held within each VISN would offer greater opportunities for other providers.
ˇ ()verall implementation has been quite successful due to the continuing
education efforts by VA headquarters.
ˇ While Persian Gulf providers have been educated well, other staff and
particularly residents who are affiliated with VA medical centers have not had
the benefit of that education. They and the staff who are not directly involved in
the program but who regularly see Persian Gulf patients need to be more
familiar with the program, the current research and understanding on the
illnesses of PG vets, and how best to met the needs of these veterans.
ˇ Education for PG-designated providers is great, but there needs to be
more education at the local level so that other clinicians who treat PG veterans
in their practices may learn about recent research and medical management
updates.
ˇ Each facility needs to improve the awareness of the providers, other staff,
and veterans on PG issues.
ˇ It would be good to have a succinct one-page monthly update to hand out
to providers who do exams and care.
ˇ Providers have indicated they would like the Persian Gulf Review and
news releases from the central VA to be sent directly to them so as to reduce any
delay in receiving this information.
ˇ There is a tremendous need to educate all the physicians involved with the
veterans' care concerning Persian Gulf medical issues. Often we use our
consultants for the completion of the exams. By educating the providers, they
would become more sensitive toward those Persian Gulf issues and
subsequently could address the requirements of the examination and the
patient's needs.
ˇ Need more publicity about the nature and current findings of ongoing
epidemiologic studies for veterans.
ˇ Some veterans are unaware that they could return for further care.
OCR for page 177
APPENDIX N
177
Problems
ˇ Primary care physicians are, for the most part, unaware of the Persian
Gulf Registry.
ˇThe issue of compensation clouds the efforts to collect objective
information for the Registry. Need a greater collaborative effort between VAHS
R&D and the VBA to ensure this distinction is understood by the veteran.
ˇ Several veterans have become disillusioned with the care they have been
offered and have given up on the system. Some have had worsening problems
but have failed to return for reevaluation.
ˇ The VA program lacks focus. When there is no well-defined disease
entity or broadly defined clinical syndromes, and no etiologic specificity,
identified with any degree of certainty, there is an unhappy doctor- (provider-)
patient relationship.
ˇ Frustrated at not being able to address all concerns voiced by the PG vets
because there are no definitive answers.
ˇ Considered not necessarily as a weakness but rather as a continuing
challenge/opportunity for improvements is how best the provider can convey to
the veterans' satisfaction the findings/explanations of their illnesses or the health
consequences of Gulf War service in light of continuing media interest and
reports that at times contain conflicting information.
ˇ Our follow-up letters, which are required by central VA, prominently
state that the purpose is to give veterans a brief clinical summary of exam
findings. However, a number of veterans interpreted the letters to be a denial of
compensation benefits. We were told to stop sending out the letters.
ˇ "Undiagnosed illness" is very difficult. Providers are very uncomfortable
with the formal diagnosis of"undiagnosed illness." Something like "Insufficient
clinical evidence at present to warrant a diagnosis of any acute or chronic
pathologic condition or residuals thereof'' would be better.
ˇ Not so subtle pressure to make a diagnosis of a chronic pathologic
condition has resulted in somewhat a "Catch 22" situation for the examiners. If
a diagnosis of a chronic pathologic conditions can be made at the time of re-
evaluation and the symptoms relating to that condition were not present while
the veteran was on active duty or within 12 months of discharge, then the
veteran may well have service-connection reduce or severed.
ˇ Providing updated, ongoing information to dozens of staff physicians as
well as a large group of residents in training has proven to be both difficult and
spotty.
ˇ Too many Persian Gulf war veterans do not understand there is a registry
for all who served.
ˇ The percentage of no-shows is high.
ˇ We saw a veteran with alleged exposure to depleted uranium and sent
urine samples to the depleted-uranium program in Baltimore but have had
OCR for page 178
178
ADEQUACY OF THE VA PERSIAN GULFREGISTRYAND UCAP
difficulty receiving the results of the urine tests. Maybe they could be made
available through email to the respective physicians.
ˇ A major weakness of program involves difficulty in diagnosis, that is the
Persian Gulf syndrome is not a well-def~ned process. Veterans and the mass
media continue to allege that "something is being hidden" from the public by
authorities, which makes dealing with veterans somewhat difficult.
ˇ Have not discerned exposures that have been reasonably linked with the
myriad health concerns presented by patients.
ˇ This entire process is becoming politicized like the Agent Orange
program.
ˇ This program, as presented to the veterans as a potential source of
monetary compensation has created unrealistic expectations and has probably
biased some of the veterans presenting histories that is thereby making the use
of such information for statistical data collection questionable.
ˇ The true workload associated with these examinations and corresponding
data recording requirements is not being captured or allowed for.
ˇ The waiting period for a Persian Gulf Registry evaluation, return, and
follow-up clinic is several months, but the physician in charge resolves this by
overbooking.
ˇ There are ongoing problems with identification of in-theater PG veterans.
It is difficult to determine eligibility accurately using the DHCP system. There
need to be two designations-"Persian Gulf Service" and "Persian Gulf era."
ˇ Funds for biopsy of lesions and testing for toxins, neuropsychological
testing, or genetic testing have not been made available at the local level.
Generally speaking, it is hoped that the clinical program will be expanded. As
more information comes to light about toxic exposure to combustion materials
from crude oil fumes, biological and/or chemical warfare agents and exposures
to and effects of vaccines and depleted uranium, the testing program for
veterans must also be expanded.
Persian Gulf Registry Code Sheet/Data
ˇ For sleep studies, a column should be designated to reflect the results
from such an evaluation.
ˇ Forms required for use in documentation of PG exams are ambiguous.
The ICD-9 codes required for the documentation form are not specific for
symptoms, but rather diagnoses. Yet they are required for each symptom. At
the end of the exam, the veteran must assist in delineating which ICD-9 code for
which symptom is to be listed as the most severe, and only one must be selected.
Often this is difficult, as several symptoms cause the veteran concern. At the
end of the form the provider must decide if the veteran has an unexplained
problem or illness, but there are no formal guidelines to follow. It might be
OCR for page 179
APPENDIX N
179
better to ask whether all the veteran's symptoms can be treated with current
therapies.
ˇ There is no computerized data collection sheet. The present PG form is
mainly for statistical purposes. A proper form for a history and physical exam
should be added.
ˇ Since many of the specialty exams are performed as part of Phase I in
order to arrive at a final diagnosis that is coded in the Phase I section, the
completion of the Phase II part of the protocol is then very problematic. We
have recently tried to review these exams at 3 and 6 months to see if a Phase II
coding sheet can reasonably be completed and then resubmitted. We have
uniformly found that the clinic physicians do not understand the requirements of
completing the code sheets.
ˇ Persian Gulf Registry code sheet question 26 for diagnostic consultations
is difficult to answer. This question requests information about consultation
referral and diagnosis. The diagnosis is made by the consultant and therefore is
not known at the time of the Phase I registry exam. The feedback the examiners
have received from the veterans is that few of the questions on the form are
difficult to understand. Veterans frequently have questions about the definition
of the terms "petrochemical" and "microwaves" (questions 1 8J, 1 8P).
ˇ The code sheet (Section 25 A/J, Column 3) mentions specifically the
month and year of onset of symptoms. An "if available" in parentheses should
be present after the month to simplify the process.
ˇ Some veterans have difficulty converting responses on their part of the
code sheet to numerical values. They need guidance.
ˇThe separation of the examination protocol into phases is clumsy,
inefficient (redundant), and unnecessarily confusing. Specifically, this relates to
the reiteration of diagnoses, ad nauseum, in the two phases. Phase II, item 26
numerical categories have always been confusing, both in this protocol and that
for the Agent Orange. They are subject to different interpretations and lead to
confused data.
ˇ The information in the Registry exam or the military CCEP must be a part
of the consolidated medical record and should be made available with the
service record to the evaluating C&P or treating site physician. The Austin Data
Center should provide the treatment center with periodic feedback regarding the
exam.
ˇ The VA should capture the vets' special program needs through a national
database at the time a VA card for service is issued. This data screen should
reflect the veterans, status, POW, RVN, POW, VIS, C&P pending, SC, female
veteran, or other (i.e., radiation, Bosnia, etch.
OCR for page 180
180
ADEQUACY OF THE VA PERSIAN GULF=GISTRYAND UCAP
Items of Note
ˇ Compensation and pension physicians are providing Phase I exams at the
same time as C&P exams in one VA.
ˇ Frances Murphy and her staff have been most helpful.
ˇOne suggestion from a VA is as follows: "...it may be more cost
effective to eliminate the Persian Gulf exam program and treat their medical
problems like [those of] any other patient. The one aspect of the exam program
that provided significant assistance to the Persian Gulf veterans and their
families was the Social Worker..." who is no longer funded.
ˇ Guidance from headquarters has been outstanding.
ˇ The approach of the VA should be to give credence to the complaints of
POW veterans.
VETERANS' SERVICE ORGANIZATIONS RESPONSES TO UCAP
Thirty-seven letters were sent to Veterans' Service Organizations (VSOs) with
details on the IOM committee on the UCAP. The letter requested the VSOs to
comment on the adequacy of the protocol and its implementation as well as the
need for education of providers and veterans. Five responses were received, and
are summarized below.
I. PROTOCOL
A. Overall Comments
ˇ The protocol is adequate to assess and address the wide range of
veterans' illnesses (1~.
ˇ The VA needs to examine the possibility of depleted uranium
exposure as a cause of illness in Persian Gulf War veterans.
ˇ Further assessment should be done on the health of the veterans'
families.
B. Medical Histories
ˇ Less emphasis should be placed on the veterans' history of smoking.
ˇ More information should be included in the histories to elicit a
detailed history of the extent of the veterans' exposures to various
hazardous agents.
OCR for page 181
APPENDIX N
C. Exams
181
ˇ Cease the use of urinalysis for depleted-uranium testing and tell all
previously tested vets that their results were probably inaccurate.
ˇ Doctors should conduct standard clinical testing for fatigue, the most
common complaint of Persian Gulf War veterans.
ˇ Many of the protocol tests are improperly performed and interpreted.
D. Diagnosis
~ The protocol is designed only to find common and easily detected
problems. It is not adequate for detecting, assessing, or treating
exposure to low-level chemical agents, biological agents, depleted
uranium, etc.
ˇ The protocol often has inconclusive results, and veterans are Heated
for each symptom, rather than for an illness.
ˇ Less emphasis should be placed on stress and posttraumatic stress
disorder (PTSD) as diagnoses.
E. Treatment
ˇ Should PTSD patients be treated differently from other mentally ill
patients?
ˇ There is little evidence that the VA is effectively treating veterans.
F. Implementation
ˇ Many facilities were slow to be educated on the UCAP and slower to
implement the protocol.
ˇ Veterans in the protocol should be assigned to a primary care
physician to oversee all phases of testing and treatment.
ˇ Information on subsequent specialty consults does not get back to the
physician who conducted the original Registry exam.
ˇ National referral centers (NRCs) should be able to diagnose
patients, but often do not fulfill that duty. Furthermore, only 1,000
veterans have been referred, and over 13,000 do not have a
. .
c Diagnosis.
ˇ NRCs need to have specific teams assigned to provide Phase II
exams.
ˇ VISNs should be made able to handle Phase II exams because
veterans often have difficulty getting to an NRC.
OCR for page 182
182
ADEQUACY OF THE VA PERSIAN GULF REGISTRY AND UCAP
II. EDUCATION AND OUTREACH
A. Veterans
ˇ Not enough spouses and dependents are aware of, or have taken
advantage of, Registry exams.
ˇ VHA does not inform vets about new efforts in the Registry.
ˇ Many veterans would not have known about the Registry without the
veterans' service organizations.
ˇ Veterans should be educated by VA about what exposures in the Gulf
could be hazardous.
B. VA Personnel
ˇ The VA needs a better understanding of possible toxic exposures.
ˇ The VA needs to stop relying on information from the Deparunent of
Defense, which has proven to be inaccurate before.
ˇ Some believe Registry providers seem to be concerned and dedicated.
Others see a lack of information and interest on the part of the
. ˇ .
physicians.
ˇ VA should consider new tests identified by non-VA groups that could
help the veteran.
ˇ Many VA physicians do not have access to the most recent medical
infonnation the veterans often have to educate their physicians on
recent developments.
ˇ Physicians need to put current medical knowledge into practice.
ˇ Many of the health care providers are first-year residents or
physicians' assistants. The VA should have more experienced
doctors. Inexperienced doctors are less likely to recognize
difficult-to-diagnose illnesses.
ˇ VA staff often generate more health hazards to the veterans by
continuing harmful actions such as imposing fumes from chlorine
and other agents on the veterans in the facilities.
III. ADDITIONAL COMMENTS
ˇ An independent organization should investigate the cause of veterans'
illnesses.
ˇ The VA should conduct formal outcome studies on the effectiveness of
medical treatments.
OCR for page 183
183
~ Me VA should evaluate We merits of Me cubed UCAP Pbase I Ed
Pbase ~ systems Ed consider Belong VISKs to complex Pbase ~ exam
Veterans oRen complain God Sensitive p~sici~s, ineffective coed bad
llow-~, Ed a Egg ~ Hey He s11pp~g Womb He cracks.
Me Calm of care ~ di~rem cemers varies widely.
OCR for page 184
Representative terms from entire chapter:
gulf war
