Australian Longitudinal Study on Women's Health
Newsletter
From the directors
Welcome to the 2024 ALSWH Participant Newsletter! We are delighted to bring you the latest news and research from the Australian Longitudinal Study on Women's Health (ALSWH). As a valued participant, your contributions are crucial to advancing our understanding of women's health.
This year has been particularly exciting, with the Australian Government Department of Health and Aged Care renewing the study’s funding until 2027. This will allow the study to continue past its 30th anniversary! We have a lot to do before then and have several significant initiatives underway.
One of the beautiful things about a study of this length is extending our research to include the next generation – our participants’ children. Over the past year, a major activity has been developing the second survey of the children of women in the 1973-78 cohort, many of whom are now adolescents. This continues the earlier Mothers and Their Children’s Health (MatCH) project.
In this edition, you'll find highlights from our recent research, updates on the myriad of ways that your data is helping to inform public health policies and a behind-the-scenes look at how your surveys come together.
Thank you for your continued participation and support. Together, we are making a meaningful impact on the future of women's health in Australia.
Yours in health,
Professor Gita Mishra (The University of Queensland) and Professor Deborah Loxton (University of Newcastle)
We acknowledge the traditional owners of the land across Australia and their continuing connection to land, sea and community. We pay our respects to First Nations Australians and acknowledge their Elders, past and present.
Research snapshots
Young women can ‘bank’ exercise for better heart health
Thank you to all the 1973-78 cohort women who participated in the Menarche to Pre-Menopause (M-PreM) substudy through clinic visits or M-PreM at home. Unlike our usual surveys, this was a hands-on substudy. Participants did a range of activities as part of a short health check, gave a blood sample to measure hormones and metabolic biomarker levels, and even tracked their physical activity and sleep for a week. Researchers are busy analysing your information, and the first papers have been published.
Initial research from the substudy shows that women can retain the benefits of exercise during their 20s for many years afterwards. Women in their 40s who were the most active in young adulthood had an average resting heart rate of around 72 beats per minute (bpm). In comparison, the group who were least active from their 20s to their 40s had a resting heart rate of around 78 bpm. The difference may seem small, but previous studies suggest an increase in resting heart rate of even one bpm is associated with increased mortality.
Knowing that we can accumulate the benefits of exercise is excellent news, especially for women who tend to be less physically active during the childrearing years.
Learn more at www.alswh.org.au/m-prem
Women with PCOS can stress less about fertility
Polycystic Ovary Syndrome (PCOS) affects around 1 in 10 Australian women. PCOS causes irregular or absent ovulation, which can make it difficult for women to fall pregnant.
Clinical practice guidelines recommend a stepped treatment for PCOS-related infertility – ovulation induction (OI) followed by intrauterine insemination (IUI) and, finally, in vitro fertilisation (IVF).
Researchers investigated outcomes for women in the 1973-78 cohort who used fertility treatments.
The good news is that they found no difference in births between women with and without PCOS or between those on different treatment paths.
More women with PCOS used fertility treatments – 38% compared to 13% of women without PCOS, but the birth rate was the same, so women with PCOS were not disadvantaged.
Read more at: alswh.org.au/women-with-pcos-can-stress-less-about-fertility/
Unintended pregnancies: insights and outcomes
If this topic is upsetting, we encourage you to skip this article. You can also access free counselling from Beyond Blue by calling 1300 22 4636 or visiting beyondblue.org.au.
Unintended pregnancies are profoundly life changing. We are sharing this research without judgement and hope that knowing how commonly this occurs helps to combat some of the stigma around this topic. From a public health perspective, knowing the prevalence of planned versus unintended pregnancies and their outcomes is important. This information helps to ensure that policies, programs and services supporting sexual health and family planning are available to those in need.
Unintended pregnancy is disproportionately experienced by young Australian women who are disadvantaged or who have experienced sexual coercion.
By age 19-24, 16% of young women in the 1989-95 cohort had been pregnant. Amongst those women who had ever been pregnant, four out of five had an unintended pregnancy (81%).
Women who hadn’t completed year 12 were over three times more likely to have an unintended pregnancy than those who had completed high school. Roughly one in five women in the cohort had experienced sexual coercion. These women were nearly three times more likely to have had an unintended pregnancy (although not necessarily as a result of coercion).
One in ten of the 1989-95 cohort reported having had an unintended pregnancy by age 19-24.
One in ten of the 1989-95 cohort reported having had an unintended pregnancy by age 19-24.
Pregnancy outcomes varied significantly between urban and rural areas, highlighting social disadvantages and lack of access to reproductive healthcare in rural regions. Women in major cities were more likely to have an abortion, while those in rural areas were more likely to have a live birth.
We would like to thank the women of the 1989-95 cohort for sharing their experiences. It’s important to note that we only asked if the pregnancy was unintended. We didn’t explore the complex emotions around the pregnancy or ask whether it was unwanted or unplanned but wanted. Decision-making around pregnancy is complicated by emotions, social expectations, access to education, employment, and social support and the availability of affordable healthcare.
Read the research at doi.org/10.1016/j.anzjph.2023.100046
Ultra-processed foods linked to high blood pressure
Ultra-processed foods (UPFs) are a concern in our modern diet. They are industrially made foods that contain ingredients not typically found in home cooking, such as preservatives, emulsifiers, sweeteners, artificial colours and flavours. Examples include packaged snacks, soft drinks, instant noodles, flavoured yoghurts, packaged baked goods, and processed meats. While they are cheap, convenient, and tasty, there is growing evidence that UPFs are detrimental to our health.
Researchers investigated the long-term effects of UPF intake on cardiovascular health in women from the 1946-51 cohort. In our modern Western diet, UPFs are hard to avoid—on average, they made up over a quarter (26.6%) of the cohort’s total dietary intake.
Women who consumed the highest amounts of UPFs (around 42% of their diet) had a 39% higher risk of developing hypertension compared to those who ate the least (around 14% of their diet).
The study's findings underscore the importance of eating a balanced diet high in fruit, vegetables and whole grains for better overall health.
Read the research at: doi.org/10.1007/s00394-023-03297-4
Ultra-processed foods linked to high blood pressure
Ultra-processed foods (UPFs) are a concern in our modern diet. They are industrially made foods that contain ingredients not typically found in home cooking, such as preservatives, emulsifiers, sweeteners, artificial colours and flavours. Examples include packaged snacks, soft drinks, instant noodles, flavoured yoghurts, packaged baked goods, and processed meats. While they are cheap, convenient, and tasty, there is growing evidence that UPFs are detrimental to our health.
Researchers investigated the long-term effects of UPF intake on cardiovascular health in women from the 1946-51 cohort. In our modern Western diet, UPFs are hard to avoid—on average, they made up over a quarter (26.6%) of the cohort’s total dietary intake.
Women who consumed the highest amounts of UPFs (around 42% of their diet) had a 39% higher risk of developing hypertension compared to those who ate the least (around 14% of their diet).
The study's findings underscore the importance of eating a balanced diet high in fruit, vegetables and whole grains for better overall health.
Read the research at: doi.org/10.1007/s00394-023-03297-4
Active ageing
Exercise that improves balance and strength can reduce falls. This is especially important for people of older age, as the risk of injury increases with age. The World Health Organization recommends older adults undertake at least 150-300 minutes of moderate-intensity physical activity each week.
As the 1946-51 cohort enters their 70s, we can compare their health and wellbeing with the 1921-26 cohort. At similar ages, about 15% of women from each cohort had fall-related injuries over a 12-month period. This shows that fall prevention remains an ongoing public health challenge.
Researchers also found generational differences. More women from the 1946–51 cohort (59%) are reaching the recommended physical activity levels than the 1921-26 cohort (43%) did 20 years ago. The younger cohort was also more likely to experience falls without injuries than the older generation (14% vs. 8%).
More importantly, in both cohorts, participating in the recommended levels of physical activity is associated with reducing falls (with and without injuries) by at least 22%.
Certain types of activity were associated with fewer falls. These include brisk walking and moderate-intensity activities such as social tennis, exercise classes, and recreational swimming.
Read the research at doi.org/10.1093/gerona/glae033
Active ageing
Exercise that improves balance and strength can reduce falls. This is especially important for people of older age, as the risk of injury increases with age. The World Health Organization recommends older adults undertake at least 150-300 minutes of moderate-intensity physical activity each week.
As the 1946-51 cohort enters their 70s, we can compare their health and wellbeing with the 1921-26 cohort. At similar ages, about 15% of women from each cohort had fall-related injuries over a 12-month period. This shows that fall prevention remains an ongoing public health challenge.
Researchers also found generational differences. More women from the 1946–51 cohort (59%) are reaching the recommended physical activity levels than the 1921-26 cohort (43%) did 20 years ago. The younger cohort was also more likely to experience falls without injuries than the older generation (14% vs. 8%).
More importantly, in both cohorts, participating in the recommended levels of physical activity is associated with reducing falls (with and without injuries) by at least 22%.
Certain types of activity were associated with fewer falls. These include brisk walking and moderate-intensity activities such as social tennis, exercise classes, and recreational swimming.
Read the research at doi.org/10.1093/gerona/glae033
Crafting the ALSWH surveys
You might wonder why we ask so many questions. The researchers who use ALSWH data wonder why we don’t ask more. And who decides on the questions anyway?
Getting the balance right is a long process involving months of discussion, research, expert feedback, review by external ethics committees, testing, and redesign.
1Reviewing the existing pool of questions
The very first task in reviewing survey content is to read all your comments made on the previous survey in order to identify any issues and emerging topics.
Then, the ALSWH Study Management Committee and a team of core researchers attend a day-long workshop to review each item of the previous survey and decide which questions stay, which go, and what needs to be added.
It’s essential to keep these questions consistent across surveys and cohorts so that we can track changes over time.
We start with the basics:
- How has your health been since the last survey?
- What symptoms have you experienced?
- What’s your lifestyle like?
To get a truly holistic view of the factors that influence your wellbeing, we need to go beyond individual factors and ask about the social determinants of health. To assess this, we ask about your:
- income
- paid and unpaid work
- education
- social support
- family relationships
- housing
- environment
- and access to healthcare.
As you progress through different life stages, the survey questions evolve to reflect your changing needs and experiences. You'll notice that as you age, there are fewer questions about contraception and pregnancy and more about menopause, caregiving, medical conditions, retirement, and support with daily activities.
2Deciding on new questions and topics
Sometimes, the timing of your surveys aligns with topical issues or significant events. For example, the last 1973-78 cohort survey was perfectly timed to ask about the impact of the 2020 bushfires. Perimenopause has emerged as an important issue that has not received the attention it deserves, so the upcoming 1973-78 cohort survey will include more detailed questions about perimenopause and its impact.
The Australian Government Department of Health and Aged Care funds the Study and can also request questions on topics of interest. Recent survey additions requested by the Department have included questions on period poverty and the impact of menopause and perimenopause on paid work.
DID YOU KNOW...
Your feedback can point us towards new research directions. For example, ALSWH included questions about polycystic ovary syndrome (PCOS) in the 2006 survey for the 1973-78 cohort because you wrote about it in your comments. Now, data from ALSWH is part of the evaluation plan for the International Evidence-based Guideline for the assessment and management of PCOS!
3Getting the questions right
If the question or topic is complex, we form working groups to investigate how other surveys have asked these questions and examine the statistical properties. Experts may be consulted for advice on complex topics.
4Reviews and approvals
The survey is reviewed multiple times by internal ALSWH committees, the Department of Health and Aged Care, and ethics committees from the University of Newcastle and the University of Queensland. Their job is to ensure that all research respects the participants' dignity, rights, safety, and wellbeing.
5Testing the survey
Once the data team has uploaded the online survey and printed paper copies (if required), multiple rounds of internal testing are undertaken.
Next, a pilot group of 200-500 participants tests the survey and provides feedback on clarity and length.
Then, we analyse the responses to look for trends in the data. Did everyone answer ‘yes’ or check ‘4’ on the scale? That might mean a different question is needed.
6Ready to send
The entire process, from initial review to final distribution, spans 9-12 months. With four cohorts and multiple substudies, our team is continuously writing, researching, testing, reviewing, distributing, and analysing surveys.
Your data in action
By being part of ALSWH and sharing your experiences through the Women’s Health Australia surveys, you are helping to improve the health and well-being of all Australian women.
At ALSWH, we regularly share study findings directly with the Australian Government Department of Health and Aged Care (DOHAC). In 2023, we prepared a Major Report for DOHAC focused on the differences between women’s healthcare use before and during the COVID-19 pandemic. Hundreds of policymakers gathered in Canberra for the annual ALSWH DOHAC Symposium in November. Topics included health service use, caregiving, multimorbidity, birth and traumatic birth experiences, violence and mental health, and mental health over the life course.
ALSWH Directors Professor Gita Mishra and Professor Deborah Loxton are also members of the Australian Government’s National Women’s Health Advisory Council. The council meets regularly to advise the Department on implementing the National Women’s Health Strategy 2020-2030.
ALSWH and its affiliated researchers often make submissions to inquiries and government consultations at both state and national levels. In 2023, your data had a direct impact on national debate, policy development and lawmaking on a range of topics.
Pandemic preparedness
A submission to the Department of Prime Minister and Cabinet COVID-19 Response Inquiry shared findings from your COVID-19 Surveys on mental health, safety, and access to services.
1 in 2 women surveyed delayed access to health services during COVID-19 restrictions.
1 in 2 women surveyed delayed access to health services during COVID-19 restrictions.
Gender equality
A submission to the Consultation on the National Strategy to Achieve Gender Equality outlined the priority issues that need to be addressed in order to achieve gender equality in Australia. They included addressing the gender bias, stereotypes and societal attitudes that perpetuate gender inequality; addressing the prevalence and impact of gendered violence; addressing women’s economic disadvantage; improving women’s health services; and investing in ALSWH to measure progress.
Sexual consent laws
A submission to the Senate Standing Committee on Legal and Constitutional Affairs Inquiry into the current and proposed sexual consent laws in Australia outlined findings from ALSWH on sexual violence and the factors that help women recover.
Reproductive healthcare
Following ALSWH’s submission to the Inquiry into Universal Access to Reproductive Healthcare, our directors gave evidence at public hearings. ALSWH’s submission reported on the cost and accessibility of health services, contraception, and reproductive healthcare. It also made recommendations for training and supporting healthcare workers, improving access to contraception, health literacy, and ongoing data collection and monitoring of contraception and healthcare service use.
13% of 24-30 year olds who didn't use contraception were concerned about health or side effects.
Birth trauma
A submission to the NSW Birth Trauma Inquiry and a presentation at a subsequent hearing gave recommendations on improving obstetric and perinatal care based on the experiences of women in the 1989-95 and 1973-78 cohorts.
In NSW, 1 in 3 women from the 1989-95 and 1973-78 cohorts experienced birth trauma during their first birth.
In NSW, 1 in 3 women from the 1989-95 and 1973-78 cohorts experienced birth trauma during their first birth.
You can find out more about submissions using your data and their outcomes at alswh.org.au/outcomes/submissions.
Study news
Did you know…
Participants will now be reimbursed for finishing their three-yearly surveys!
Check your survey invitation email for details.
Spread the word, we’re recruiting!
Since the study commenced in 1996, the diversity of Australian women has changed significantly. To ensure our data represents all Australian women and their health needs, we are now recruiting more women to join the 1973-78 and 1989-95 cohorts.
Who can join?
Women born between 1973 and 1978 (now aged 46-51) or 1989 and 1995 (now aged 29 to 35) can join the Women’s Health Australia project! We particularly want to hear from women with South, Southeast or Northeast Asian ancestry.
What’s involved?
New participants will be asked to complete a short, two-minute online health survey, followed by a 15-minute survey within a few weeks. Then, they will join you in completing a survey every few years.
Can you help spread the word to your friends, family, and networks?
Share this link with them:
alswh.org.au/join-womens-health-australia/
Upcoming Surveys
1989-95 cohort
Survey 7 and the MatCHES substudy (for eligible participants) are now open.
1973-78 cohort
Survey 10 is open and the MatCH 2 pilot and substudy surveys will open in the second half of 2024 (for eligible participants).
1946-51 cohort
Survey 11 Pilot will be launched in late-2024.
1921-26 cohort
Six monthly follow-up surveys continue.
Vale Lois Bryson
Emeritus Professor Lois Bryson, founding investigator of ALSWH, passed away on Sunday, 7th January 2024.
Lois was a trail-blazing second-wave feminist and leading sociologist who we remember as a generous colleague, down-to-earth mentor, and friend. Lois is remembered for her unwavering commitment to creating positive social and political change.
She was adamant that ALSWH was never about the research team but always about the women of Australia, and she measured our success by how effectively our work improved Australian society and women’s lives.
She was forthright, honest and kind. Lois challenged us to think differently about women’s health and society, merging the medical and the social with the political and personal. She was vocal and courageous, creative, and fun.
Pictured here with the investigator team awarded the original ALSWH tender, Lois had a leading role in developing and conducting ALSWH from its conception in 1994 until 2006, when she retired from academia.
After retirement, Lois remained a willing advisor and friend to the Study for many years. Her spirit lives on in the women she inspired.
Left to right: Wendy Brown, Margot Schofield, Annette Dobson, Lois Bryson, Julie Byles
Substudy updates
GELLES
Thank you to the 5,340 women from the 1989-95 cohort and 4,114 women from the 1973- 78 cohort who participated in the Genetic Variants, Early Life Exposures, and Longitudinal Endometriosis Symptoms study (GELLES).
We’re analysing your data now to understand why some women get endometriosis and others don’t.
Learn more: www.alswh.org.au/gelles/
MatCHES
Have you given birth since 2015? Does your child or children live with you at least part of the time? If you’re in the 1989-95 cohort, we want to hear about your health and healthcare experiences before, during, and after pregnancy and learn about your child’s health and development. We will use this information to improve healthcare for mothers and their children.
Eligible participants were invited to do the Mothers and their Children’s Healthcare Experience Study (MatCHES) substudy survey after completing the 1989-95 cohort’s 7th survey. If you missed your invitation to the 7th survey, please get in touch with us.
Learn more: www.alswh.org.au/matches
MatCH 2
In 2016, we asked mothers in the 1973-78 cohort to participate in the Mothers and their Children’s Health (MatCH) substudy. The original substudy reported on the health of the children of the 1973-78 cohort participants, then aged 0-12.
In 2024, we will launch a second survey for mothers in the 1973-78 cohort and their children. Please watch your inbox for an invitation to complete this survey.
Learn more: www.alswh.org.au/match
Your questions answered
How and why is my data linked with other data?
Improving health and healthcare services
Records such as Medicare benefits, pharmaceutical benefits, hospital, immunisation, death and disease registers, and aged care datasets are linked to study data. These records provide administrative and classification information on health events, medical conditions, treatments and medications, and services used. This wider perspective allows us to examine the entire patient journey through the health system, finding answers which we could not get from survey data alone. For example, by putting Medicare data together with survey data, we can investigate how women’s access to health services is affected by where they live.
How are records linked?
Your privacy is a priority. Records provided to the Study are subject to strict privacy and confidentiality regulations. Dedicated Data Linkage Units match and de-identify records. They do not have access to your survey answers. Your name and contact details are not included with the information we receive. The researchers and project staff who analyse your data also sign confidentiality statements. This process is approved by the responsible Human Research Ethics Committees.
Consent
We have previously asked for your consent to health record linkage. These records are now regularly provided without you needing to consent every time. If you wish to opt-out of this method of data collection, please contact the Study (see below). You can keep doing our surveys, and receive these newsletters, even if you opt-out of data linkage.
‘Til death do us part…
Because date and cause of death are essential in the analysis of health outcomes, we have approval from our Human Research Ethics Committees to check the National Death Index for everyone who has participated in the Study. This also avoids distress for relatives who may otherwise receive survey reminders for people who have passed away.
Survey follow-up
If you don’t complete your latest survey, we will send you reminders, including email, mail, SMS, and phone reminders. The Study may also access the Electoral Roll to locate participants if we’ve lost contact. If you do not wish to be contacted in this way, please let us know.
For more details, read our privacy policy: www.alswh.org.au/privacy-policy
See a list of the organisations involved and the information currently used in ALSWH research at: www.alswh.org.au/data-linking-explained
Further information
If you have concerns about our methods of data collection, need more information, or wish to opt out of record linkage, please contact the Study.
- Freecall: 1800 068 081
- Email: alswh@newcastle.edu.au
If you would prefer to discuss this with an independent person, you can contact:
- The Human Research Ethics Officer, Research Branch, The University of Newcastle, University Drive, Callaghan, NSW 2308, Ph: 02 4921 6333
- The Human Research Ethics Officer, The University of Queensland, St Lucia, QLD 4072, Ph: 07 3365 3924
- Office of the Australian Information Commissioner https://www.oaic.gov.au
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The research on which this newsletter is based was conducted as part of the Australian Longitudinal Study on Women’s Health by the University of Queensland and the University of Newcastle. We are grateful to the Australian Government Department of Health and Aged Care for funding and to the women who provide the survey data.
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