Australian Government, Department of Veterans' Affairs
Health

Questions and Answers for the Validation Study

Why was the Validation Study being done?

The Validation Study is the third and final volume of the Morbidity of Vietnam veterans series. The results of Volume 1: Male Vietnam Survey and Community Comparison Outcomes (the Morbidity Study) suggested that Vietnam veterans and their children have a higher prevalence of certain health conditions than the general population. In this Study the following recommendations were made to address this.

It was recommended that the results obtained for the following conditions reported by veterans be validated as a matter of urgency:

  • all cancers (with the exception of non-melanotic skin cancers);
  • motor neurone disease; and
  • multiple sclerosis.

For the children of Vietnam veterans it was recommended that:

  • the responses which, taken together, indicate an increased level of congenital abnormalities in the children of veterans be validated as a manner of urgency.
  • the responses which, taken together, indicate increased mortality rates in the children of veterans be validated as a manner of urgency.
  • the responses which indicate increased rates of leukaemia, Wilm’s tumour and cancer of the nervous system in the children of veterans be validated as a manner of urgency.

Therefore, the Validation Study aimed to medically confirm these results for certain conditions in veterans and their children.

Which conditions were included in the Validation

Study?

For veterans: cancers (with the exception of non-melanotic skin cancers), motor neurone disease and multiple sclerosis.

In veterans’ children: congenital anomalies, deaths from any cause, leukaemia, Wilm’s tumour, cancer of the nervous system and all other cancers.


How was the Validation Study done?

The veterans and their children over the age of seventeen were surveyed to ask their permission for the Validation Study team to access medical records to validate their reported conditions. The medical practitioners suggested by the veterans were then surveyed to confirm from their records if the reported conditions did exist. Alternatively, the veterans and their children were matched against the cancer or death registries to see if they were on it. The results were then compiled and compared to the community standards derived in the Morbidity Study.

The Validation Study was conducted by the Australian Institute of Health and Welfare (AIHW).


When did the Validation Study start?

The AIHW started work on this study in June 1998 and the first surveys were sent in October 1998.


Why did the Validation Study take so long?

The initial time frame underestimated the time needed for veterans, veterans’ children and doctors to get their forms returned with a high enough response rate. Repeated prompting in the form of letters, reissue of forms and telephone calls were required to obtain response rates that would be statistically valid.


Who was included in the Validation Study?

The Validation Study sample group included all Vietnam veterans who participated in the Morbidity Study in 1997 (40,030 out of 49,994 veterans), who reported the conditions being studied in themselves or their children. Using data collected in this study, it was found that 6,842 contactable veterans belonged in this group.


What does 'validate' mean?

If a condition has been validated it means that a medical source has provided information confirming that the condition does exist in the veteran or their children, or the condition has been identified on the cancer or death register.

Put simply, a validated condition means that the veteran or their child has the reported condition.


What are the results of the Validation Study?

When compared to the community standards derived in the Morbidity Study, veterans show:

  • higher rates of melanoma of the skin and prostate cancer
  • no difference in rates for colorectal, breast and eye cancer, non-Hodgkins lymphoma and leukaemia
  • lower rates of lung cancer, soft tissue sarcoma and testis cancer

Veterans’children show:

  • higher rates of spina bifida and cleft lip/palate
  • three times the rate of suicide
  • higher rates of deaths due to accidents and illnesses
  • no difference in rates for Wilm’s tumour and anencephaly
  • lower rates of leukaemia, cancer of the nervous system, Down's syndrome, trachoe-eosophageal fistula and absent body parts.

What causes these cancers? Are they service related?

The Validation Study did not investigate causation. It aimed to medically confirm that certain conditions were in excess in Vietnam veterans and their children. It is not known what causes the cancers that were investigated or if it had anything to so with Vietnam service.


Where do we go from here?

In order to complete the validation process, the study on motor neurone disease and multiple sclerosis needs to be completed. The AIHW will be focussing on this and hope to complete the process early in 2000.


What happens to the data collected in these studies?

The Morbidity Study survey forms are held in a secure environment with the original data collector, AC Neilsen, and at the completion of the Validation Study will be deposited with the Australian Archives under the custodianship of the AIHW. The electronic version of the data was transferred to the AIHW, where its has been physically and electronically secured with access restricted to those undertaking the study.

The data from the Morbidity Study and from the Validation Study will remain at the AIHW and is protected under the Commonwealth Privacy Act 1988 and the AIHW Act. It may be used in further studies, but these must be approved by the AIHW Ethics Committee.


Why weren’t motor neurone disease and multiple sclerosis included in the Validation Study results?

The classification of motor neurone disease and multiple sclerosis is quite difficult and in most cases requires that the veteran consult a neurologist. This is a time consuming process and involves a lot of resources, which were not available in the timeframe and scope of the study.

However, with the bulk of the Validation Study completed, time and resources can now be dedicated to the validation of MND and MS. The result of the validation of these conditions is expected early 2000.


Were the veterans happy to respond to the Validation Study?

Of the veterans that did respond, 99% were happy for the study team to access their records to validate their conditions. Most of the contact with veterans, either through the Helpline or telephone prompting exercises, was pleasant and most were supportive of the study.


What are some reasons why veterans did not respond to the Validation Study?

It is not known exactly why some veterans did not respond to the Validation Study. Some possibilities are that they felt that they had done enough already and were sick of filling in surveys; the address information provided for them may have been incorrect; they may have been away when the survey was sent; they might have just not wanted to; they didn’t want to get their children involved; or they may have been too ill to participate in the validation exercise.


What happens to all the information from the last survey and this one?

All the data from the last survey and this one will be held at the Australian Institute of Health and Welfare. It has very strict privacy laws. The data would only be used again if you give your permission for this in the future, and this would only be for scientific or medical research.


Why did you need to do this validation?

Results from the initial survey suggested that certain problems occur more often among Vietnam veterans than in the general population. These problems include cancer, multiple sclerosis and motor neurone disease and, in veterans' children, cancer, birth defects and deaths from a range of causes. This needed further investigation. Experience shows that there are some problems with self-reported surveys such as the health study; for example people may misunderstand the original question. In studies such as this it is standard practice to have medical conditions confirmed by a doctor. This makes the results of the study more accurate and scientific, which means that it gives the Gvernment a better basis for policies that assist veterans.


What is the Government’s response to the findings?

As the Validation Report has just been completed, the Government is considering its response to the findings and needs time to establish what are the most effective additional measures to compliment existing services.


How many steps does this study have?

The Validation Report is the third and final step in the current Vietnam Veterans Morbidity (Health) Study. Of course, it is not possible to say what studies may be done in the future. We are aware that responding to studies can be a burden, but that has to be weighed up against the benefits of getting the most accurate picture.


Does this study prove a link between the veterans’ service in Vietnam and disabilities in their children?

No. It only shows that an association exists for validated conditions. The causes of the conditions are not able to be determined from the data collected in the Study.


How accurate are the findings of the study? How much reliability can we place on them?

The findings are accurate for all conditions that were validated. Due to the nature of the Study it is not possible to be as confident about the accuracy of those conditions that were self reported without subsequent validation. However, there is a high degree of correlation between Departmental accepted claims and the numbers of veterans in the Study reporting they have the condition.


Does this study prove that the validated conditions were caused by the veterans’ service in Vietnam?

No. The Study only shows that there is an association between the veteran’s war service and the condition.


Who can I (or my family member) ring as I am quite distressed by the findings in the Study?

You can ring the Study Hotline on 1800 550 504 during business hours (9am-5pm EDST) or outside of business hours you can ring Veterans Line on 1800 011 046 or 1 800 043 503 if you live in NSW or 1 800 019 332 if you live in Far North Queensland.


How do I get a copy of the report?

You can purchase a copy of the report from the Australian Government Print Office in your State ($15.00 per copy).

Alternatively, you can access a copy on the internet from the DVA website , or you can obtain a copy of the Executive Summary only from DVA offices over the counter or by mail.


My son/daughter has condition "x". This condition was not covered by the validation report. Why wasn’t "x" covered?

Only those conditions that were reported as higher than the community norm and not already adequately covered by the existing DVA arrangements for treatment were subjected to validation.


Will the ESO’s receive a copy of the Study?
  • Copies will be sent to the National Offices of the ESO’s.
  • Copies have been sent to the DCs for issue to members of the various consultative committees they have dealings with.
  • The Study in PDF format (use Acrobat to open) will be on the AIHW and DVA websites on Friday 12.30pm. It is hoped that the HTML version will be on the websites by 10 December 1999.

How long did validation take?

The agreement was signed in August 1998 and the mail out of forms started on 17 September 1998.


Who do we contact for further information or assistance?
WHO
WHAT FOR
NUMBER
Hotline Initial inquiries 1800 550 504
AIHW Hotline Methodology/Statistical/Technical issues 1800 236 166
AIHW - Paul Jelfs Report Content Issues (02) 6244 1140
AIHW - Michelle Wells Media inquiries (02) 6244 1012
AIHW - Lena Searle Media copies of Report (02) 6244 1032
DVA Principal Medical Advisor Technical Medical especially around spina bifida/ms/mnd issues (work) (02) 6289 6399

(mobile) 0412 120 085

Minister’s Office -
Ms Danielle Moore
Media inquiries/detailed response questions other than Study technical/methodology (02) 6277 7820

0419 608 216

See What's New on the DVA web page Copies of Study materials/Q&As www.dva.gov.au
AIHW web page Copies of Study materials/Q&As www.aihw.gov.au
Local VVCS Anger management/ distress/ other counselling type issues 1800 043 503 NSW

1800 019 332 FNQ

1800 011 046 all other locations