In the period 2011-2015 the Monash University Centre for Occupational and Environmental Health (MonCOEH) undertook an important follow-up study of the health and well-being of all people who participated in the 2000-2003 Australian Gulf War Veterans’ Health Study. The 2000-2003 baseline study aimed to determine whether the physical and psychological health of Australian veterans of the 1990/1991 Gulf War differed from a comparison group of Australian Defence Force (ADF) personnel who were not deployed to the Gulf War. That study’s significant findings have been published and presented internationally and have influenced veteran and defence health policy and services.
The recent Australian Gulf War Veterans' Follow-up Study aimed to assess the longer term physical, psychological and social health and well-being of Gulf War veterans and the comparison group members. Recruitment for the study commenced on 19th October 2011 and closed mid-August 2012. During that time, invitation packages were mailed to approximately 3,000 potential participants. This was followed by data cleaning, statistical analyses and the write up of the study findings into three reports; a detailed Technical Report, a shorter Summary Report and a brief Executive Summary. These reports were released to the public in approximately April 2015 and can be viewed here.
A brief thank you letter is soon to be mailed to all participants, along with a brief summary of findings. When available, a copy of the letter will be available here.
We will be submitting these important research findings to national and international medical journals, conferences and seminars to ensure their widespread dissemination. Published articles will appear here.
We may want to contact participants in the future to ask about their health, to validate health information we have received from other sources or to invite participation in future research. For these reasons, we ask that all participants notify us of changes to their contact details (address and/or phone number) by email at firstname.lastname@example.org or phone freecall 1800 729 913. Please provide your full name and date of birth, current mailing address, current phone numbers and email address if available.
Frequently asked questions
What is the aim/purpose of the 2011 Follow Up Study?
The overall aim of the 2011 Follow-up Study is to assess the longer term physical, psychological and social health and well-being of Gulf War veterans and the comparison group members. The study will investigate the persistence of, or recovery from, multisymptom disorder, psychological conditions, chronic fatigue and other conditions that may have been present at baseline, and the factors which predict persistence or recovery. The study will also investigate quality of life and social functioning, use of health services and medicines and service-related entitlements.
What does the research involve?
Eligible participants will receive an invitation to participate in the study in the mail. The invitation package will include detailed information about what participation involves and it is important that potential participants read this.
In brief, participants will be invited to:
- Complete a comprehensive postal questionnaire about their health and well-being, life-style and work history since 2001;
- Complete a telephone interview to assess psychological health;
- Consent to the Monash research team accessing some of the participants’ health services, medication use and service related entitlements data held by Medicare Australia or the Department of Veterans’ Affairs (DVA).
It is important for the study to access several sources of information as serving, non-serving and veteran personnel may use different Defence, DVA, Medicare Australia (Medicare, Pharmaceutical Benefits Scheme (PBS), Repatriation Pharmaceutical Benefits Scheme (RPBS)) or alternative health services at different times in their lives. The Medicare or DVA data, for example, may provide information about medical specialists seen or medications taken in the past that participants have forgotten, whilst the questionnaire allows participants to report the use of alternative health services which may not fall under Medicare or DVA scheme data. By investigating all of these sources of data, we aim to capture a comprehensive picture of participants’ health.
What are the risks and inconveniences?
Risks and inconveniences involved with participation include time incurred and the possibility of some emotional distress in answering questions about life and service experiences. Completing the postal questionnaire could take about one hour, as would the telephone psychological health interview. The postal questionnaire and telephone interview may include questions about stressful or upsetting experiences, or questions which elicit unpleasant or distressful memories or feelings. Participants will be provided with information about supportive services that are available to them if needed.
Can participants withdraw from the research?
Being in this study is voluntary and eligible people are under no obligation to participate. Participants may choose to complete all or some parts of the questionnaire, interview or other data collection. Participation can be discontinued at any time.
There will be no detriment to the career of serving Australian Defence Force personnel who choose not to participate or choose to withdraw from the study.
Confidentiality and privacy – What will happen to the data?
All of the information gained in the study will be held securely by Monash University for a minimum of five years in adherence with the University’s regulations and the various provisions of the Privacy Act 1988. Participants’ answers will be completely confidential and any personal details, which may identify them in any way, will not be passed to the Department of Veterans' Affairs or Department of Defence.
How will results be disseminated?
The results of the study will be presented as aggregated data so that no individual participants can be identified. The study’s findings will be reported to the DVA and as articles for publication in scientific peer-reviewed journals. A summary of findings will be posted on this MonCOEH website. Results will also be reported to veteran and military health conferences, seminars and other relevant forums.
Who is doing the research?
The study is being undertaken by a team of senior investigators and co-investigators from the 2000-2003 study at Monash University who are joined in this study by senior investigators with a range of expertise in veterans’ and mental health from other institutions. The investigators are:
- Professor Malcolm Sim (Principal Investigator, Director of the Monash University Centre for Occupational and Environmental Health (MonCOEH, Department of Epidemiology and Preventive Medicine (DEPM), Monash University);
- Dr Helen Kelsall (Senior Research Fellow, DEPM, Monash University);
- Dr Jill Blackman (Research Fellow, DEPM, Monash University;
- Professor Andrew Forbes (Biostatistician, DEPM, Monash University);
- Ms Stella Gwini (Statistician, DEPM, Monash University);
- Ms Breanna Wright (PhD student, DEPM, Monash University);
- Dr Dean McKenzie (Postdoctoral Fellow DEPM, Monash University and Murdoch Childrens Research Institute, Royal Children’s Hospital, Melbourne);
- Professor Alexander McFarlane (Professor of Psychiatry, The University of Adelaide);
- Dr Keith Horsley (Medibank, Data Section);
- Professor David Clarke (Psychiatrist, School of Psychology and Psychiatry, Monash University);
- Professor Mark Creamer (Professorial Fellow, Department Psychiatry, University of Melbourne).
How do I contact the research team?
The MonCOEH research team can be contacted by phone on 1800 729 913 or by email at email@example.com
How is the study funded?
The study is funded by the Australian Government Department of Veterans’ Affairs.
How did the GWVHS 2011 Follow Up come about?
The 2011 Follow Up Study was an initiative of the Monash University Centre for Occupational and Environmental Health (MonCOEH) which conducted the baseline study in the period 2000-2003. As it had been a number of years since the baseline study, we thought it important to revisit the baseline study participants to investigate any change, deterioration or improvement in their health.
This will be the longest term follow up study of Gulf War veterans world-wide. The comprehensive medical and exposure data collected in the baseline 2000-2003 study provides very valuable data for addressing research questions about longer term health and the factors that influence this in the 2011 Follow Up Study.
The initial study protocol was designed in 2008, based on the scientific literature available at that time and using those parts of the baseline study protocol that were considered most useful to repeat to investigate the longitudinal pattern of health in the study group.
We submitted the study protocol to the DVA Applied Research Funding Program. After a process of necessary internal approvals and contract negotiation, the study concept was approved to proceed in January 2010.
Since that time the final study protocol has been further developed and has been through a lengthy period of consultation with co-investigators and an Advisory Committee. There has also been an extensive process to obtain Human Research Ethics Committee (HRECs) approvals. There have been a total of 11 HRECs that have been required to scrutinise various aspects of the study protocol in the interests of protecting participant’s rights and privacy.
Why is the study seeking access to Medicare and DVA health data?
By collecting health information from a variety of sources, including participants’ self-reported health information, and also Medicare records and DVA health service utilisation records, we are able to construct a comprehensive dataset of the health of the study population.
Because the baseline health study was 10 years ago, linkage to Medicare and DVA health data dating back to 2001 may provide information about medical specialists seen or medications taken in the past that participants have forgotten. In addition, the study questionnaire allows participants to self-report the use of alternative health services or treatments that do not fall under Medicare or DVA Health scheme data.
With participant’s permission to access their Medicare and DVA data forward in time until 2031, we will be able to continue to track some information about the study populations’ health. In the event that we are unable to locate or contact some study participants in the future because they have moved, linkage to Medicare and DVA data may be our only ongoing source of health information for those people if they have used those services.
If you consent to Medicare and DVA data linkage in this study, but decide some time later that you wish to withdraw that consent, you just need to contact us on 1800 729 913 or firstname.lastname@example.org. If you do not speak to a study staff member directly, please be sure to leave sufficient contact details so that we can call you to verify your identity (to make sure we update the correct record) and to clarify your instructions regarding your previously provided Study consent.
What are the possible benefits of the Follow up Study?
This Follow Up Study is an opportunity for the entire baseline study population (1,456 Gulf War veteran and 1,588 comparison group participants) to provide extensive information about their current health and well-being. That information will be collected in a scientifically valid way and will be collated, analysed and reported in the national and international scientific and medical media, and to the Department of Veterans’ Affairs, and to veteran and military health forums.
The collective experience of the Gulf War veterans and military comparison group currently, in regard to the measured health outcomes, is otherwise undocumented other than in the confidential clinical assessments of individuals.
Whilst the study does not provide individuals with medical consultations and treatment, the results may inform the medical community of the ongoing health needs of the study population.
The study results may be useful in identifying sub-groups of participants with particular patterns of illness who could be the subject of further follow up investigations.
How do participation rates affect the study?
The validity of the study depends on participation by as many people as possible. High participation rates increases the likelihood that the health of the participating group is representative of the health of the whole study population.
If only a minority of invited people participate, then we can only report health results for that small group. We cannot know whether the small participating group is more well or less well than the non-participants.
A high participation rate may also positively affect future efforts to undertake research with the veteran population. If participants are indicating interest at this time, it will be easier to argue for necessary funding in future applications to granting bodies and Human Research Ethics Committees.
Can you provide more information about the psychological health questions and interview?
The baseline study findings indicated that some Gulf War veterans and comparison group members were suffering debilitating psychological conditions including major depression, PTSD and alcohol dependence. These psychological health outcomes may be a direct result of experiences and exposures from the Gulf War or another deployment, they may have stemmed from physical illnesses experienced over time, or there may be another cause. In this follow up study of the health of the Gulf War veterans and comparison group it is important that we again investigate psychological health as it comprises an important part of the total picture of health in the study population.
In an over-the-phone interview, we are using the Composite International Diagnostic Interview (CIDI) to assess study participants for the presence or absence of psychological disorders. The CIDI was also used in the baseline study. The CIDI was developed by the World Health Organization and is an instrument specifically designed for large studies where it is necessary to assess every participant in a standardised and objective way. The CIDI has been used to measure psychological disorders in large national Australian and US population studies. Reported prevalences of psychological disorders in the Australian population are often based on CIDI results.
The CIDI uses the criteria set out by the DSM-IV (Diagnostic and Statistical Manual of Mental disorders Version 4) to determine whether a person meets criteria or not for a psychological disorder. The questions are standardised so that the interviewers remain objective and their subjective feelings cannot influence the results of each interview. This objectivity is essential to a population survey, otherwise individual participants would get a different result depending on who their interviewer was.
The CIDI is a diagnostic research tool (not a clinician’s assessment) and this is how the results from the interview will be reported. The CIDI allows the researchers to assess the pattern of likely psychological disorders in the study group as validly and objectively as possible. MonCOEH will be able to use the results of the 2011 Follow Up Study to assess change in psychological health over time, to compare Gulf War veterans with the comparison group, to compare the study population today with the results from the baseline study, and to compare the study population with the Australian population data that has also been collected using the CIDI.
For any individual, the CIDI cannot replace a comprehensive clinical assessment that could be done face to face with a qualified psychologist or psychiatrist.
Who will be doing the psychological health interviews?
The psychological health interviews will be conducted by an experienced interview team at the Hunter Valley Research Foundation (HVRF). These are not psychologists or psychiatrists, but researchers who are experienced and trained in conducting sensitive and standardised health interviews.
What is included in the postal questionnaire?
The postal questionnaire aims to assess a large number of health issues that participants may have experienced. Some health outcomes that were measured in the baseline study will be measured again at Follow up. In this way we can investigate whether the study group has experienced deterioration, improvement or no change in those health outcomes since the baseline study. Those health outcomes measured longitudinally include doctor-diagnosed or treated medical conditions; other symptoms of physical, neurological or psychological illness; respiratory health; tiredness and fatigue; hospitalisations; pregnancy outcomes; alcohol use; symptoms of posttraumatic stress disorder and depression; and general health and wellbeing.
In addition the postal questionnaire will assess some health and well-being outcomes that were not comprehensively assessed at baseline. For example, the Follow Up Study postal questionnaire includes investigations of pain intensity and associated disability; injury; sleep disturbance; gastrointestinal disorder; health service utilisation; musculoskeletal conditions; demoralisation; suicidal thoughts; dietary and exercise behaviour; social integration and support; financial stress, incarceration and homelessness; risk taking or aversion; quality of life and life satisfaction.
Are you collecting information about Gulf War exposures, for example vaccinations and medications and SMOIL, or other military exposures?
We collected extensive Gulf War and other military-related exposure information in the baseline study questionnaire, and we will use that information in this follow up study to investigate any associations between Gulf War and military exposures and current health outcomes. The exposure information collected from participants at the time of the baseline study, 10-12 years after the Gulf War, is closer in time to the event and more likely to be accurately recalled than exposure information that we might try to collect again now, 21 years after the Gulf War.
Possible Gulf War deployment and other military exposures investigated at the time of the baseline study included:
- vaccinations and prophylactic medications such as pyridostigmine bromide (NAPS) and malaria prophylaxis,
- SMOIL (smoke and oil from burning oil wells) and other airborne particulate matter,
- pesticides and repellents,
- biological and chemical weapons,
- depleted uranium,
- infectious disease agents,
- petroleum products, solvents, CARC paint, vehicle exhaust,
- extremes of heat and cold,
- and psychological stressors.
Where possible we tried to supplement the self-reported exposure data with any additional data available, such as published documentation of the SMOIL plume movements and measurements of its constituent composition, and collection of individuals’ vaccination records.
Why are you collecting information about incarcerations?
In addition to physical and psychological health, the Follow Up Study aims to investigate broader social health and community integration outcomes in the Gulf War veterans and comparison group. This includes relationship outcomes such as marriage or divorce, occupational and financial stability, homelessness, the quality of social networks with friends or family, and participation in social activities or clubs.
An additional measure of the recent social health of the population is the rate of incarceration. The purpose of the inclusion of questions about pre-1991 incarceration is to establish the “baseline” rate of incarceration in the two study groups, so that any change in the rates since that time can be investigated. If the rate of incarceration in Gulf War veterans since the time of the Gulf War is different to that in the comparison group for the same period of time, then this is a possible adverse outcome of Gulf War deployment and factors that have stemmed from that deployment experience.
Who are the participants invited in to the Follow Up Study?
The 2000-2003 baseline study population included:
- all Gulf War veterans as defined by the DVA Nominal Roll for that conflict. These were ADF personnel who deployed to the Gulf region between 2 August 1990 to 4 September 1991
- a military comparison group of ADF personnel who were operational at the time of the Gulf War but not deployed.
Recruitment for the 2000-2003 baseline study took 2 ½ years and resulted in 80% of the GWVs and 57% of the comparison group participating. DVA undertook the contact and recruitment, and passed on the confidential names and contact details for consenting participants to MonCOEH.
The people invited by MonCOEH into the 2011 Follow Up Study are the participants from the baseline study. It is those people who MonCOEH have contact information and baseline study health and exposure data for. The Follow Up study seeks to directly compare the current health of the participants against the baseline study results to investigate whether the pattern of health has deteriorated, improved or remains unchanged, and to assess the factors that have influence this.
Why are only participants from the baseline study included in the 2011 Follow Up Study?
MonCOEH does not have any identifying information or contact information for the group of people who declined to participate in the baseline study. This information is protected according to the provisions of the Privacy Act 1988. We also do not have any baseline socio-demographic, exposure or health information for the group of people who declined to participate in the baseline study, that would enable us to address the research questions of the study.