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Appendix C
Evaluation of the U.S. Department of Defense
Persian Gulf Comprehensive Clinical Evaluation
Program: Overall Assessment and Recommendations*
1.) OVERALL ASSESSMENT OF THE CCEP GOALS PROCEDURES:
The Comprehensive Clinical Evaluation Program (CCEP) clinical protocol is
a thorough, systematic approach to the diagnosis of a wide spectrum of diseases. A
specific medical diagnosis or diagnoses can be reached for most patients by using
He CCEP protocol. The Department of Defense (DoD) has made conscientious
efforts to build consistency and quality assurance into this program at the many
medical treatment facilities (MTFs) and regional medical centers (RMCs) across
the country.
The committee is impressed with the quality of the design and the efficiency
of the implementation of the clinical protocol, the considerable devotion of
resources to this program, and the remarkable amount of work that has been
accomplished in a year. The high professional standards, commitment, and
diligence of the physicians involved in the CCEP at He RMCs were readily
apparent at the Free committee meetings. The committee commends He DoD for
its efforts to provide high-quality medical care in He CCEP and the success that it
has achieved to date in developing the inDas~ucture necessary to efficiently
contact, schedule, refer, and Pack thousands of patients Trough the system.
This appendix is excerpted from the Institute of Medicine report, Evaluation of the
U.S. Department of Defense Persian Gulf Comprehensive Clinical Evaluation,
Washington, D C.: National Academy Press, 1996.
79
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ADEQUACYOFTHEVAPERSIANGULFREGISTRYANDUCAP
Overall, the systematic, comprehensive set of clinical practice guidelines set
forth in the CCEP are appropriate, and they have assisted physicians in the
determination of specific diagnoses for thousands of patients across the country.
2.) GENERAL RECOMMENDATIONS FOR THE IMPLEMENTATION
OF THE CCEP:
2.1.) Referrals of Patients from Phase I to Phase II of the CCEP:
2.1.1.) Structure and revise the CCEP protocol and logistics to allow
the majority of patients to receive a final diagnosis by Phase I:
Currently, the majority of patients do not receive a final diagnosis
until Phase II, yet some of these patients have straightforward medical
problems. The Committee recommends that final diagnoses could be
reached in Phase I if more diagnostic resources are made available. This
major change would require the availability of substantial numbers of
internists or family practitioners at MTFs to perform comprehensive
evaluations. It would also require better, more consistent explanations to
MTF physicians about the purposes and procedures of the CCEP. It
would require regional medical center physicians to provide adequate
quality assurance of MTF work-ups and timely feedback to MTF
.
prove Hers.
On January, 17, 1995, the DoD adopted these suggestions by setting
goals that about 80% of patients would receive a definitive diagnosis at
an MTF level. For some patients, this change has required specialty
consultations at the MTF, as well as advice from an RMC physician.
These changes necessitated an enhanced quality control role by the RMC
physician and prompt, appropriate feedback to the MTF physician.
2.1.2.) Curtail diagnostic work-ups in patients not seriously disabled
with minor complaints:
Initially, patients who do not accept their initial diagnosis could
request a continued evaluation all the way Trough Phase II. The
Committee recommends that diagnostic work-ups in patients not
seriously disabled but with minor complaints should be curtailed.
Alternatively, if a physician has made a definitive diagnosis and
appropriate treatment has been given, the evaluation would be concluded.
On January 17, 1995, the DoD implemented the suggestions that referral
to Phase II be made on the basis of the clinical judgment of the primary
care physician, and patients were no longer permitted to self-refer to an
RMC.
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APPENDIX C
81
2.1.3.) Require additional efforts to provide more care at the primary
care level:
The Committee encourages efforts to provide more care at the
primary care level, because they will enhance the continuity of care and
will foster the establishment of an ongoing therapeutic relationship.
2.1.4.) Continue referral of subgroups of patients whose illnesses are
difficult to diagnose:
Patients whose illnesses are difficult to diagnose should continue to
be referred to Phase II at an RMC. The decision to refer to Phase II
should be leased on the clinical ~ud~nent of Me primary Are physics=,
which, in tum, would be dependent on the Claris of the patient's
diagnoses and the feasibility of the proposed treatment program at the
MTF level. The DoD should continue its goal of enhanced accessibility
of RMC physicians to allow regular consultations with MTF primary care
physicians on patients with more complex diagnoses.
2.2.) Systematic Guidelines for Psychiatric Referrals and Adequacy of
Psychiatric Resources:
2.2.1.) Develop explicit guidelines for the identification of Phase I
patients who would benefit from a psychiatric evaluation:
CCEP physicians have noted the need for standardized guidelines for
screening, assessing, evaluating, and treating patients. Such Phase I
guidelines should be developed to help ensure adequate psychiatric
resources for both the initial evaluation and long-term follow-up care.
2.2.2.) Alert primary care physicians about the high prevalence of
psychiatric disorders:
Two methods Cat have been proposed by RMC physicians to
expedite the scheduling of psychiatric evaluations would be (1) the more
Dequent use of civilian psychiatrists and (2) consideration of using Ph.D.-
level psychologists, as well as psychiatrists, when necessary.
3.) SPECIFIC OBSERVATIONS OF AND RECOMMENDATIONS FOR
THE IMPLEMENTATION OF THE CCEP:
3.1.) Analysis and Interpretation of the CCEP Results:
3.1.1.) Symptoms and diagnoses in the CCEP population:
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ADEQUACYOF THE VA PERSIAN GULFREGISTRYAND UCAP
3.1.1.1.) No evidence has been found that the DoD has been
flying to avoid reaching a single unifying diagnosis:
The committee found no evidence that the DoD has been trying
to avoid reaching a single "unifying" diagnosis when a plausible one
was available. A "unifying" diagnosis is defined here as a single
diagnosis that could explain most or all of a patient's symptoms.
3.1.1.2.) Signs and symptoms in many patients can be explained
by well-recognized conditions:
One interpretation of the CCEP results is that the signs and
symptoms in many patients can be explained by well-recognized
conditions that are readily diagnosable and treatable. The committee
concludes that this is a more likely interpretation than the
interpretation that a high proportion of the CCEP patients are
suffering from a unique, previously unknown "mystery disease."
3.1.1.3.) Provide more detailed information on specific diagnoses
in future reports:
By providing more detailed information on specific diagnoses in
its future reports, the DoD might help correct the impressions among
the general public that exist about the high degree of prevalence of a
"mystery disease" or a new, unique "Persian Gulf Syndrome."
3.1.1.4.) Investigate the diagnosis in patients with disability
processing actions:
Disability processing actions in the Services' Physical Disability
Processing Systems have been completed for 246 of the 10,020
CCEP patients. The DoD has not provided any data about their
diagnoses or their reasons for medical separation from the mili0.
The committee recommends that the DoD investigate the diagnoses
in this group of patients in future reports, as well as whether or not
the disorders could have been caused or exacerbated by service in
the Persian Gulf.
3.1.1.5.) Don't view CCEP results as estimates of the prevalence
of disability related to Persian Gulf service:
Many other individuals who served in the Persian Gulf have left
active service and, hence, are not eligible for the DoD's CCEP.
Some of these veterans may have disabilities related or unrelated to
their service in the Persian Gulf, and those with disabilities might be
more likely to have left active service. For these reasons, the CCEP
results should not be viewed as estimates of the prevalence of
disability related to Persian Gulf service.
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APPENDS C
83
3.1.2.) Evidence of a New, Unique Persian Gulf Syndrome:
3.1~2.1.) There is a lack of clinical evidence of a unique Persian
Gulf Syndrome:
The committee agrees with DoD that there is currently no
clinical evidence in the (:CEP of a previously unknown, serious
illness among Persian Gulf veterans. If there were a new or unique
illness or syndrome among Persian Gulf veterans that could cause
serious impairment in a high proportion of veterans at risk, it would
probably be detectable ~ the population of 10,Q20 CCEP patients.
On the Aver hand, if an unknown illness were mild or affected only
a small proportion of veterans at risk, it might not be detectable in a
case series, no matter how large.
3.1.2.2.) Share the entire CCEP data set with qualified
researchers outside of the DoD:
The committee encourages the DoD's plan to share the entire
CCEP data set with qualified researchers outside of the DoD who
might be able to undertake the kind of research with the
methodological sophistication that the identification of a new
syndrome would require.
3.1.3.) Potential Relationship of Illnesses in CCEP Patients to Service
in the Persian Gulf:
3.1.3.1.) Discuss the issue of causality explicitly and
unambiguously in its future reports:
Physicians involved with the development and the
administration of the CCEP have, in various public presentations,
acknowledged that some CCEP patients have developed illnesses
that are directly related to their service in the Persian Gulf. The
recent DoD report on 10,020 CCEP participants, however, only
touches on this issue indirectly. The committee encourages the DoD
to discuss the issue of causality explicitly and unambiguously in its
fixture reports. Such a discussion might help to alleviate the current
climate of confusion and mistrust that exists among some Persian
Gulf veterans and the general public.
3.1.3.2.) Determine the timing of the onset of disease:
The committee recommends that the DoD attempt to determine
the timing of the onset of disease, especially for patients who have
significant impairments. Review of military or civilian medical
records that predate enrollment in the CCEP may provide
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ADEQUACYOF THE VAPERSIANGULFREGISTRYAND UCAP
contemporaneous documentation of the onset of symptoms in some
patients, especially if the symptoms are serious. ~ addition, it is
important to determine whether service in the Persian Gulf has
contributed to the exacerbation of preexisting diseases in some
CCEP patients.
3.1.4.) Comparison of the CCEP Population with Other Populations:
3.1.4.1.) Be cautious about comparison with other populations:
In its most recent report, the DoD compares the symptoms and
diagnoses in the CCEP population with the symptoms and diagnoses
in several community-based and clinically based populations. ~ the
committee's view, interpretations based on comparisons with other
populations should be made with great caution and only with the
explicit recognition of the limitations of the CCEP as a self-selected
case series. The CCEP was not designed to answer epidemiological
questions, such as how the frequencies of certain diagnoses compare
between the CCEP population and a control population. Instead, it
was designed as a medical evaluation and treatment program.
Indeed, the research aims of the CCEP do not appear to be stated
explicitly, nor does there appear to be a concrete epidemiological
study plan. Without research hypotheses, it is not possible to judge
whether any particular comparison group is appropriate. Each
individual population should be described to prevent confusion.
3.1.4.2.) It's difficult to establish causal relationships by relying
on CCEP data alone:
It would be extremely difficult to establish causal relationships
or to identify and characterize a new "Persian Gulf Syndrome"
definitively by relying on data from the CCEP alone. The latitude
permitted in the clinical examination program conflicts with the rigor
necessary to answer an epidemiological question.
3.1.4.3.) Consider the CCEP data to have high clinical utility:
The CCEP data do have considerable clinical utility, and they
could be used to address many important questions from a
descriptive perspective. Many case series could be derived from
these data. In addition, the results of the clinical exams could provide
guidance in the selection of research questions and in the design of
future epidemiological research. The CCEP findings could be used
to generate epidemiological questions on other types of diseases that
are much more Sequent in the CCEP population, such as
musculoskeletal diseases.
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APPENDIX C
3.2.) Specific Medical Diagnosis:
3.2.1.) Psychiatric Conditions:
85
3.2.1.1.) Make patients aware of psychiatric conditions and their
prevalence and morbidity:
Patients need to understand Cat psychiatric conditions and
disorders are real diseases that cause real symptoms and that
diagnoses are made with objective criteria and are not merely
"labels" applied because physical abno~malit~s were not Fields The
CCEP patients, as well as their primal care physicians, also need to
understand the prevalence of and the concomitant morbidity that
result Dom psychiatric disorders in We general population (major
depression, for example). Finally, Me CCEP patients need to be
aware that effective treatments Cat actually ameliorate symptoms
exist for many of these disorders.
3.2.1.2.) Emphasize effects and diagnosis of psychosocial
stressors:
In its fixture reports, the DoD is encouraged to emphasize Cat
psychosocial stressors can produce physical and psychological
effects Cat are as real and potentially devastating as physical,
chemical, or biological stressors. The DoD should also emphasize
Cat Borough efforts to diagnose psychiatric conditions in Me CCEP
population may lead to appropriate, successfill ~ea~anents.
3.2.1.3.) Identify people with risk of developing depression or
Post-Traumatic Stress Disorder (PTSD):
The committee is particularly concerned about the CCEP
patients who have developed or who are at risk of developing major
depression or PTSD. These people need to be identified and
provided with some form of preventive intervention.
3.2.1.4.) Improve standardization of psychiatric evaluations:
The committee recommends that the DoD consider methods of
improving the standardization of Me psychiatric evaluations in the
CCEP. The DoD should consider establishing detailed guidelines for
the psychiatric evaluations and should attempt to obtain greater
standardization of these evaluations among Me various hospitals
across Me country. These guidelines could provide suggested
procedures for Me use of selected self-report instruments for the
assessment of the most commonly diagnosed disorders, as well as
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ADEQUACY OF TlIE VA PERSIAN GULFREGISTRYAND UCAP
procedures for more in-depth structured clinical interviews when
indicated.
3.2.1.5.) Document and investigate the onset and course of
symptoms and psychosocial stressors:
It would be especially important to document the onset and
course of symptoms and to investigate their possible link with
psychosocial stressors associated with mobilization and return home,
as well as with service-related exposures in the Persian Gulf region.
This assessment would require an additional set of questions to
supplement the questionnaire currently used in Phase I of the CCEP.
The thorough assessment of psychosocial stressors is essential
information for treatment planning for patients with complex,
chronic symptoms.
3.2.1.6.) Standardize neuropsychological evaluations:
Standardization of the neuropsychological evaluations is a
related concern. The neuropsychological methods vary from pencil
and paper testing at some sites to computer-administered testing at
other sites. One method of achieving a better consensus is to
convene a meeting attended by one psychiatrist and one
neuropsychologist from each center to attempt to standardize their
methods.
3.2.1.7.) Standardize classification and coding of diseases:
In addition to the standardization of psychiatric evaluations in
the CCEP, the classification and coding of these diseases should also
be standardized.
3.2.1.8.) Document headache categories differently:
The classification of different types of headaches into three
separate categories may be consistent win ICD-9 coding rules, but
the DoD should also report a special tabulation Mat combines all
headaches into one group.
3.2.1.9.) Add explicit written instruction on medical record-
keeping and coding:
More explicit written instructions could be added to Me CCEP
guidelines to help prevent the most frequent problems found in Me
medical record-keeping and coding. Committee comments about
inconsistencies are mainly aimed at the quality control necessary for
accurate reporting of summary data rather than at Me quality of Me
medical care itself.
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APPENDIX C
87
3.2.1.10.) Expand discussion of psychological stressors:
DoD should consider expanding discussion of the psychological
stressors that were present during the Persian Gulf War.
3.2.1.11.) Utilize results of on-going studies to revise CCEP:
It is possible ~ Me DoD will be able to use We results of on-
going epidemiologic studies on psychiatric conditions to revise the
CCEP, that is, to revise the standardized questionnaires or to add or
delete targeted lab tests or specialty consultations. In addition, the
CCEP clinicians may be able to utilize these results in the counseling
~ treatment of Dew priers. These reedits may ~o be Swell for
the DoD in its planning to minimize the effects of psychosocial
stressors in future deployments through the use of preventive
medicine interventions.
3.2.2.) Musculoskeletal Conditions:
3.2.2.1.) Provide more details of diagnostic categorization of
musculoskeletal conditions:
The draft and final DoD reports on 10,020 CCEP patients do not
provide adequate details for the IOM committee to make a thorough
evaluation of the diagnostic categorization of musculoskeletal
conditions. More explanation about Me diagnostic aspects of these
musculoskeletal conditions would be useful, for example,
information on singlejoint involvement versus multijoint conditions
or articular versus non-articular conditions. In addition, details on
disease severity and disease activity would be useful.
3.2.2.2.) Place more emphasis on musculoskeletal conditions:
The DoD and We DVA should consider placing more emphasis
on research on musculoskeletal conditions, since these are the most
prevalent disorders among the CCEP populations.
3.2.3.) Signs, Symptoms, and Ill-Defined Conditions:
3.2.3.1.) Clarify types of disorders included in the ICD-9
category:
The committee recommends that in future reports the DoD
attempt to clarify the types of disorders that are included in the ICD-
9 category of signs, symptoms, and ill-defined conditions (SSIDC).
Individuals with these signs, symptoms, and ill-defined conditions
should be evaluated in a rigorous manner, just as individuals with
any other symptoms are evaluated.
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ADEQUACY OF THE VA PERSIAN GULFREGISTRYANDUCAP
3.2.4.) Infectious Diseases:
3.2.4.1.) Infectious disease is not a frequent cause of serious
illness:
The IOM committee concludes Cat infectious diseases are not a
frequent cause of serious illness in the CCEP population.
3.2.4.2.) Veterans are not likely afflicted with some previously
unknown pathogen:
On the basis of We current evidence, it is unlikely that a
significant proportion of Persian Gulf veterans are afflicted with
some previously unknown pathogen that is evading the current
diagnostic efforts.
3.2.5.) Chronic Fatigue Syndrome, Fibromyalgia, and Multiple
Chemical Sensitivity:
3.2.5.1.) Estimating prevalence of chronic fatigue syndrome,
fibromyalgia, and multiple chemical sensitivity is difficult:
The IOM committee's review of the CCEP protocol suggests
that data on chronic fatigue syndrome (CFS), fibromyalgia (FM),
and multiple chemical sensitivity (MCS) may have been collected by
various diagnostic methods. For this reason, it is not possible to
estimate the prevalence of these conditions from the CCEP data.
3.2.5.2.) Collect data using established diagnostic criteria for
CFS and FM:
In the clinical evaluations, data should be collected by using
established diagnostic criteria for CFS and FM.
3.2.5.3.) Established diagnostic criteria do not exist for MCS:
A widely accepted set of diagnostic criteria does not exist for
MCS. Consequently, the medical evaluation in CCEP cannot be
expected to diagnose the clinical syndrome of MCS.
3.2.5.4.) Include CFS, FM, and MCS in on-going and future
epidemiological research studies:
If more is to be learned about the relationship between these
disorders (CFS, FM, and MCS) and Persian Gulf service, they
should be included among the epidemiological research studies that
are ongoing or planned for Me future.
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APPENDIX C
89
3.2.5.5.) Continue thorough workup to diagnose sleep
disturbances and fatigue:
Because of the thorough, systematic workup mandated in the
CCEP, many disorders that could contribute to sleep disturbance and
fatigue have been diagnosed. These diligent efforts to unmask occult
medical problems that could substantially contribute to plague have
been productive and should continue.
3.3.) Use of the CCEP Results for Education Improvements in the
Medical Protocol and Outcome Evaluations:
3.3.1.) Use of the CCEP Results for Education:
3.3.1.1.) Continue public release of analysis results of the CCEP
· · · -
on an on-going, perloc IC JaSIS:
The IOM committee encourages the DoD to continue to release
its analysis of the results of the CCEP on an ongoing, periodic basis.
Several audiences that would be interested in these results include
active-duty members of the service, veterans, members of the U.S.
Congress, the lay media, as well as military, DVA, and civilian
medical and public health professionals. The CCEP medical findings
would also be of interest to physicians in the DVA system and in the
general community.
3.3.1.2.) Distribute CCEP findings to all primary care physicians
at MTFs and RMCs:
The medical findings of the CCEP should be distributed
promptly to all primary care physicians at the MTFs and RMCs. This
would provide feedback on their diagnostic decision-making.
Information on the frequencies of particular symptoms and their
specific diagnoses made in the CCEP population could be useful, for
instance, in developing a differential diagnosis for individual
patients.
3.3.1.3.) Develop a more concise version of the DoD report for
active-duty service personnel and veterans:
A more concise version of the DoD report on 10,020 patients,
written in nontechnical language and with clearly stated conclusions,
should be developed for a target audience of active-duty service
personnel and veterans. If the DoD developed and distributed a fact
sheet or newsletter aimed at Persian Gulf veterans, the information
on the CCEP would be more accurate and more comprehensive than
most reports in the general news media. This would also provide an
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ADEQUACY OF THE VA PERSIAN GULF REGISTRY AND UCAP
additional opportunity to notify the readers about the availability of
the medical exam in Me CCEP, the hotline number, and the
eligibility criteria.
3.3.1.4.) Develop a more comprehensive document describing
potential exposures in more detail:
The DoD should also consider developing for clinical use in the
CCEP a more comprehensive document that describes the many
potential exposures in more detail. Any document that is prepared,
however, must make clear what is known and what is unknown
about the relationship between these stressors and the physical or
psychological consequences.
3.3.2.) Use of the CCEP Results to Improve the Medical Protocol:
3.3.2.1.) Use CCEP examination results to improve standardi-
zation practices:
The DoD now has results on the examinations of more than
10,000 CCEP patients, which could be used to improve the
standardized questionnaires, lab tests, and specialty consultations.
3.3.2.2.) Refine questions related to potential psychological
stressors:
More refined questions related to potential psychological
stressors could be added systematically to the Phase I medical
history. The CCEP physicians might find this information useful in
diagnosing and counseling their patients. In addition, it may be
possible to identify patients who are at increased risk of
psychological problems on the basis of their experiences in the war.
Perhaps explicit questions on death exposure and other known risk
factors could be added to the Phase I questionnaire.
3.3.2.3.) Determine if lab tests or specialty consultations should
be added to Phase I:
The CCEP results should be analyzed to determine whether
there are lab tests or specialty consultations that should be added
systematically to Phase I to increase its diagnostic yield. Diseases
that are diagnosed relatively frequently in Phase II may often be
overlooked in Phase I. If such diseases could be identified, perhaps
appropriate screening instruments could be added to Phase I.
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APPENDIX C
91
3.3.2.4.) Compare and coordinate methods and clinical results of
the CCEP and UCAP:
The DVA uses a protocol similar to that used in the CCEP
called Me Uniform Case Assessment Protocol (UCAP). The methods
and clinical results of the CCEP and UCAP should be compared to
coordinate- and improve the two programs.
3.3.3.) Use of the CCEP Results for Patient Outcome:
3~3.1~) Perform targeted patient evaluations.
On Me basis of more Man 10,000 patient evaluations to date,
RMC physicians could begin to perform a series of targeted patient
evaluations. The most common diseases in the CCEP could be
identified, and suggested approaches to patient treatment could be
developed. Consensus guidelines for the treatment and counseling of
CCEP patients who have the most common disorders could be useful
for primary care physicians.
3.3.3.2.) Communicate successful treatment methods between
RM:Cs:
If one RMC has had a lot of experience with a particular disease
category and some measure of success in its treatment, the DoD
could ensure that a description of their successful methods is
communicated to the other MTFs and RMCs across the country.
3.3.3.3.) Review disorders among CCEP patients who have
applied for disability payments or for medical discharge from
the service:
The DoD could perform a review of the types and severities of
the disorders among CCEP patients who have applied for disability
payments or for medical discharge from the service. In addition, the
final disposition of these cases could be evaluated, including the
potential relationship between particular diseases and Persian Gulf
service. The DoD could use the results of these disability
determinations to predict which diseases are likely to be associated
with the most impairment among CCEP patients in Me future. The
DoD could also use these results to develop rehabilitation and early
intervention methods for impaired Persian Gulf veterans, such as the
Specialized Care Centers (SCC). Another reason to analyze these
disability claims would be to investigate possible preexisting risk
factors for the development of the impairment. If such risk factors
are identifiable, then targeted preventive medicine interventions
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ADEQUACY OFTlIEVA PERSIAN GULF REGISTRYANDUCAP
could be planned for individuals participating in future overseas
deployments.
3.3.4.) Specialized Care Center (SCC):
3.3.4.1.) The DoD has made serious efforts to develop an SCC
program that has ambitious goals:
The IOM committee concludes that the DoD has made serious
efforts to develop an SCC program with ambitious goals for a select
group of seriously impaired military personnel. The committee's
review should be considered preliminary, however, because it is
based on one visit and it is still early in the development of the
program.
3.3.4.2.) Provide multidisciplinary treatment modalities:
The SCC currently performs a thorough reevaluation of each
patient's medical problems. SCC physicians should consider limiting
the diagnostic role that they play to focusing on the incoming
patients who have been very difficult to diagnose at the RMC level.
Instead, the SCC should focus on providing multidisciplinary
treatment modalities that are not readily available at the RMC level.
3.3.4.3.) Need for
regimens:
The need for individualized follow-up is crucial for the types of
difficult patients who are likely to be treated at the SCC. Medical
staff at the SCC will need to lmow whether a particular therapeutic
plan is feasible at the patient's nearest MTF and whether long-term
follow-up care can be performed. The primary care physician at the
MTF needs to encourage continuous patient compliance with the
carefully designed, individualized therapeutic regimens.
i]
ndividualized follow-up and therapeutic
3.3.4.4.) Develop objective measure of functional status for
follow-up evaluation:
The SCC physicians should develop a set of relatively objective
measures of functional status for the follow-up evaluation. These
could include (1) appropriate utilization of medical care, (2)
appropriate use of medications or other methods to cope with
symptoms, (3) general level of activities of daily living, (4)
employment status, and (5) status of interpersonal relationships.
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APPENDIX C
93
3.3.4.5.) Evaluate the SCC program itself:
The SCC program itself needs an evaluation component after
several of its graduates have returned for their 6-month
reevaluations. Several issues will need to be evaluated in light of the
successes arid barriers that the program has experienced, including
~gib~ty criteria for patienm-, roles of the SCC in a diagnostic
reevaluation of patients; successful continuity of care of patients,
with shared responsibility by the SCC and MTFs; and the unique
need for the SCC, beyond the usual standard of a tertiary care
medical center.
3.3.4.6.) DoD has taken a serious approach to the treatment and
rehabilitation of these patients in the SCC:
The committee believes that the DoD has taken a serious
approach to the treatment and rehabilitation of these impaired
patients who have treatable, chronic diseases.
3.3.4.7.) Investigate costs and benefits of the SCC program:
Because this program is very labor-intensive, it is probably very
expensive on a per-patient basis. At the same time, the potential
benefits for each patient could be high, if successful rehabilitation of
serious, long-term impairment can be achieved. Subsequent
evaluations of We SCC program should investigate its costs and
benefits, if possible.
3.3.4.8.) Identify the most effective elements of the SCC
program:
If the SCC program is successful in improving the health and
fimctional status of its patients, perhaps the elements that are most
effective in enabling the patients to cope with their symptoms could
be identified. Perhaps some of these elements could be disseminated
and integrated into existing MTF programs that are close to where
CCEP patients live and work.
3.4.) Research Relevant to the CCEP:
3.4.1.) Epidemiological Research Relevant to the CCEP:
3.4.1.1.) Utilize on-going epidemiological studies for revising or
improving the CCEP:
The results of on-going epidemiological studies may be useful
for making revisions or improvements in the CCEP medical protocol
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ADEQUACY OF THE VA PERSIAN GULFREGISTRY AND UCAP
itself, for example, to revise the standardized questionnaires or to
add or delete targeted lab tests. The study results may also be useful
in the counseling and treatment of CCEP patients.
3.4.1.2.) Acknowledge the serious limitations of the CCEP data
for epidemiological purposes:
Data from individuals in the CCEP are also being used in some
of these epidemiological studies. ~ these studies, the serious
limitations of the CCEP data for epidemiological purposes that were
previously identified must be kept in mind.
3.4.2.) Exposure Assessment Research Relevant to the CCEP:
3.4.2.1.) Investigate experiences of individuals in UICs with
higher rates of CCEP participation:
The IOM committee encourages DoD to perform fiercer
investigations on the war and postwar experiences of individuals in
the Unit Identification Codes (UICs) with higher rates of CCEP
participation.
3.4.2.2.) Investigate exposures restricted to particular locations
or special occupational groups:
The committee encourages the DoD to investigate exposures
that were restricted to particular locations or special occupational
groups, such as troops who had direct combat exposure. The types of
symptoms and diseases in CCEP participants in these special groups
and UICs could be analyzed and contrasted win the symptoms and
diagnoses of CCEP participants in over units.
COMMIII~E ON ,1~ DOD PERSIAN GULF SYNDROME
COMPREHENSIVE CLINICAL EVALUATION PROGRAM
Gerard Burrow, Chair, Dean, Yale University School of Medicine, New
Haven, Connecticut
Dan Blazer, Dean of Medical Education and Professor of Psychiatry, Duke
University Medical Center, Durham, North Carolina
Target Bleecker, Director, Center for Occupational and Environmental
Neurology, Baltimore, Maryland
Member, Institute of Medicine.
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APPENDIX C
95
Ralph Horwitz, Chairman, Department of Internal Medicine, Yale University
School of Medicine, New Haven, Connecticut
Howard Kipen, Associate Professor and Director, Occupational Health
Division, Roben Wood Johnson Medical School, Piscataway, New Jersey
Adel Mahmoud, Chairman, Department of Medicine, Case Western Reserve
University and University Hospitals of Cleveland, Cleveland, Ohio
Michael Osterholm, State Epidemiologist, Minnesota Department of Health,
Minneapolis, Minnesota
Robert Pynoos, Professor of Psychiatry, University of California at Los
Angeles, Los Angeles, California
Anthony Scialli, Associate Professor, Deparunen:t of Obstetrics and Gynecology,
Georgetown University Medical Center, Washington, D.C.
Rosemary Sokas, Associate Professor of Medicine, Division of Occupational
and Environmental Medicine, George Washington University School of
Medicine, Washington, D.C.
Guthrie Turner, Chief Medical Consultant, Division of Disability Determination
Services, State of Washington, Tummwater, Washington
Michael Weisman, Professor, Division of Rheumatology, University of
California at San Diego Medical Center, San Diego, California
Staff
Michael A. Stoto, Director, Division of Health Promotion and Disease
Prevention
Kelley A. Brix, Study Director
Deborah Katz, Research Assistant
Amy Noel O'Hara, Project Assistant
Donna D. Thompson, Division Assistant
Mona Brinegar, Financial Associate
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Representative terms from entire chapter:
ccep patients
