8/2/2019 RAC Comments on GW Survey

1/18

Highlights of Concerns andDiscussion Points Raised by the RACLea Steele, Ph.D.Baylor University Instituteof Biomedical Studies

8/2/2019 RAC Comments on GW Survey

2/18

Members reviewed VA notice in Federal Register, survey instrument

prior to last RAC meeting

Submitted summary (2 page) written recommendations to Secretary ofVeterans Affairs, OMB

Recommended that VA suspend moving forward with proposed

survey pending major revisions to address serious problems

8/2/2019 RAC Comments on GW Survey

3/18

20 years after the war, fundamentally important questions about thehealth of U.S. Gulf War veterans have never been addressed, others requirecurrent information

VA National Survey is the largest and most representative sample of U.S.Gulf War veteransthe best (only?) opportunity to get much-neededanswers

In addition, survey will serve as key data resource for governmentprograms for Gulf War veterans, including VA Gulf War research program

8/2/2019 RAC Comments on GW Survey

4/18

Need answers to basic questions about the health of U.S. Gulf War

veterans Occurrence of most diagnosed diseases unknown in GW veterans

Diseases of longer latency (e.g., cancers, neuro disorders) may now be apparent Gulf War illness (most prevalent problem): current prevalence and long-range

prognosis unknown

VA National Survey is the largest sample of U.S. Gulf War veterans

Best (only?) opportunity to determine if GW veterans have excess rates ofdiagnosed conditions

Best opportunity to determine current rate of GWI, GWI prognosis

Best opportunity to evaluate changes in the health of Gulf War veterans over time

8/2/2019 RAC Comments on GW Survey

5/18

Characterize the current status of Gulf War veterans health and

changes in their health over time.

For GW veterans, this requires systematic information on:

1) Diagnosed medical conditions

2) Gulf War undiagnosed illness (GWI) Unfortunately, proposed follow-up survey does not systematically

assess either

8/2/2019 RAC Comments on GW Survey

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Assess effectiveness of medical care for GWI, treatments used

by veterans for GWI

Questions re: Health of veterans family members

Gulf War veterans use of VA vs. private medical care,

health insurance? economic impact of health problems?

8/2/2019 RAC Comments on GW Survey

7/18

1. Most prominent Gulf War problem: Gulf War undiagnosed illnessGWI assessment requires systematic inventory of symptoms.

At minimum, this requires the follow-up survey to:

Systematically query symptoms known to be associated with Gulf War service

Query symptoms evaluated in the initial (1995) VA National Survey

Query symptoms required to define Gulf War illness (using existing case

definitions or to optimize a case definition)

Provide the same basic information for each symptom (symptom severity,

duration, onset)

8/2/2019 RAC Comments on GW Survey

8/18

19a. In the past year, have you had a persistent or recurring problems with.

If YES, PLEASE

MARK ONEIF YES, did you first experience

this BEFORE, DURING, or

AFTER the WAR?Has this symptom

been present in the

last month?NO MILD SEVERE BEFORE DURING AFTER NO YES

1. Any headaches O O O O O O O O2. Any trouble with blurred vision O O O O O O O O. O O O O O O O O16. Generalized muscle aching or

cramps O O O O O O O O17. Joint aching or pain O O O O O O O O18. Numbness or tingling sensation in

hands or feet O O O O O O O O19. Swelling in any joints O O O O O O O O O O O O O O O O25. Felt excessive fatigue (not due to

exercise) O O O O O O O O26. Problems with fatigue lasting more

than 24 hrs after exertion O O O O O O O O. O O O O O O O O29. Stomach or abdominal pain O O O O O O O O30. Reflux, heartburn, or indigestion O O O O O O O O31. Diarrhea (loose or watery stools) O O O O O O O O. O O O O O O O O46. Difficulty with speech O O O O O O O O47. Had difficulty in concentrating,

reasoning, or memory loss O O O O O O O O. O O O O O O O O

8/2/2019 RAC Comments on GW Survey

9/18

47-118 symptom questions, queried in diverse ways

Little info on chronic symptoms, symptom severity Data cant be used to assess GW multisymptom illness, symptom patterns, etc

Examples of groups of symptoms, how theyre asked in proposed survey:

9 mood symptoms: how many days over past 2 wks? 17 somatic symptoms: during past 4 weeks, how much bothered? not/ a little/a lot

15 questions on anxiety attacks, panic over past 4 wks (no/yes)

7 mixed symptoms (nervousness, muscle tension) how many days in last 4 wks?

12 questions on anxiety/stresshow much bothered by each over past 4 wks?

17 symptom questions to assess PTSD

10 symptom questions to assess Irritable bowel syndrome

13 symptom questions on aspects of dyspepsia

8 questions for Chronic Fatigue Syndrome (problem: omits main CFS symptom)

10 WOMEN ONLY questions (menstrual cycle, use of hormones, PMS)

8/2/2019 RAC Comments on GW Survey

10/18

Overall, the proposed follow-up survey

Asks about symptoms in too many different ways

Omits key symptoms associated with Gulf War service

Lacks info on symptom duration (cant assess chronic vs. short-term symptoms)

Lacks info on symptom severity

Does not allow ascertainment of any GWI case definition

(e.g. includes just 3 of 10 symptoms required to assess CDC case definition for

chronic multisymptom illness)

8/2/2019 RAC Comments on GW Survey

11/18

2. Diagnosed medical conditionsFollow up previous indications of problems, flag any condition that potentially

affects Gulf War veterans at excess rates. This requires systematic

evaluation of:

Neurological diseases (e.g., MS, brain cancers, migraines, ParkinsonsDisease, difficult-to-characterize neuro diseases)

Diagnosed cancers (identify specific types)

Cardiovascular disease (specific types)

Skin conditions (specific types)

Autoimmune conditions (specific types)

8/2/2019 RAC Comments on GW Survey

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During the past 12 months, did you

have any of the following conditions? IF YES, did you first have the problem BEFORE, DURING,or AFTER the WAR?

In what

month/year did it

begin?NO YES BEFORE DURING AFTER MONTH/YEAR

1. Arthritis of any kind O O O O O _____ / _____2. Lumbago (back disorder) O O O O O _____ / _____3. Diseases of the muscles or tendons O O O O O _____ / _____4. Skin cancer O O O O O _____ / _____5. Any other cancer O O O O O _____ / _____6. Eczema or psoriasis O O O O O _____ / _____7. Dermatitis or any other skin trouble O O O O O _____ / _____8. Disease of hair or scalp, hair loss O O O O O _____ / _____9. Cirrhosis of the liver O O O O O _____ / _____10. Hepatitis O O O O O _____ / _____.20. Migraines O O O O O _____ / _____

31. Frequent bladder infections O O O O O _____ / _____

8/2/2019 RAC Comments on GW Survey

13/18

Asks about 23 medical conditions or categories of conditions (e.g. depression,skin cancer). No obvious rationale for why some conditions were asked about,while others were not

Does ask about ALS and asthma, but not other conditions of concern for GWveterans (e.g. MS, brain cancers, migraines, Parkinsons Disease, autoimmuneconditions)

Asks about general categories, rather than specific diagnoses (e.g. asks aboutany cancer, arthritis of any kind ,other endocrine disorder), so survey

data will not provide rates of specific diseases

8/2/2019 RAC Comments on GW Survey

14/18

Will not provide data that can be used to assess highest priority Gulf

War health issues

Collects extensive data on issues of lesser concern

8/2/2019 RAC Comments on GW Survey

15/18

Little familiarity with the pressing health questions associated

with Gulf War military service

Lack of familiarity with methods required for systematic

assessment of multisymptom illness in population studies

8/2/2019 RAC Comments on GW Survey

16/18

As designed, the survey does not collect data that will providecurrent, comprehensive info on either Gulf War illness or rates ofdiagnosed diseases affecting Gulf War veterans

As designed, the survey overemphasizes psychological conditionsand symptoms

Survey requires an in-depth review and detailed revisions to address

these major problems and myriad other shortcomings

8/2/2019 RAC Comments on GW Survey

17/18

How did proposed survey get so far in the process with such extensive problems?Approved by VA program directors? Reviewed by other sectors of VA GW researcheffort? Reviewed by other scientists with GW expertise? (the proposed survey wasnot previously reviewed by RAC or by GW Steering Committee)

Problems underscore the importance of a well-planned, coordinated program of Gulf

War research at VA

VA has not yet developed a Gulf War research plan designed to achieve definedresearch objectives of high priority

Gulf War health research is complex; requires involvement of scientists with expertise

in diverse disciplines (e.g., neurology, epidemiology, toxicology)

VA Gulf War research effort requires program development, oversight by scientistswith expertise in what we have learned about the health of Gulf War veterans over thepast 20 years

8/2/2019 RAC Comments on GW Survey

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