Participant Newsletter

The first few months of 2020 have been challenging in so many ways. Building resilience and maintaining a sense of social connectedness will play a large part in supporting our mental health in the months to come.

We encourage you to do your surveys as usual. You can stay connected with us by joining our communities on social media. We will continue to share positive stories and research findings from the study throughout the year. Please know that although our staff are working remotely, we can still be contacted via email (info@alswh.org.au) or our freecall number (1800 068 081) if you have questions for us.

The information you provide is more important than ever, and we continue to ensure that it is front and centre in women’s health policy discussions. In November, the Australian Government Department of Health hosted the ALSWH Policy Symposium: Linking Data to Inform Policy. The Symposium showcased topics on mental health, sexual and reproductive health, ageing, chronic conditions, preventative health and the impacts of violence, and was well attended by policymakers, public servants, and researchers. The articles in this newsletter are based on some of the key presentations.

The Honourable Greg Hunt, Minister for Health, opened the Symposium, describing the Study as critical and saying it has helped inform the long-term National Women’s Health Strategy from 2020-2030. This Strategy lays out the Australian Government’s priority health areas for the coming decade. We are incredibly proud to be part of the development of the Strategy and to see your contributions, and the value of your data recognised.

With thanks,

Professor Julie Byles (The University of Newcastle) and Professor Gita Mishra (The University of Queensland)

Since the Study started back in 1996, we have been privileged to read the back page comments written by participants in all cohorts - these are the responses to questions that ask, Have we missed anything? There you have shared stories of triumphs and tragedies, bravery and grace. We never could have imagined how generous you would be in telling us about your lives.

The one theme that comes through clearly in all of these writings is the resilience of women. Women who have lived through the Depression, World War II, the war in Vietnam, recession, drought, bushfires and illness. As we now face the COVID-19 virus it is important to remember that this is a global emergency that joins a long line of global emergencies that have occurred over the past 100 years. We thought you might like to read some of the comments from your fellow participants that we have found particularly inspiring.

You are strong, wonderful women and you have our best wishes for your wellbeing in the months to come.

Gita Mishra – Director, University of Queensland
Leigh Tooth – Deputy Director, University of Queensland
Julie Byles – Director, University of Newcastle
Deborah Loxton – Deputy Director, University of Newcastle

One of the Study’s core themes is understanding the drivers of good mental health versus poor mental health. Mental health is also one of five priority areas of the National Women’s Health Strategy. Government representatives at the recent Canberra Symposium were understandably interested in your survey information, what it says about trends in mental health among women, and the links between mental and physical health.

The number of women in each cohort diagnosed with anxiety or depression has increased over the years. However, women’s overall mental health seems to be getting better. This difference could be because the stigma around mental health is decreasing and more people might be willing to seek help.

Mental Health Over Time
(higher scores reflect better mental health)

Now that the age ranges of the cohorts overlap, we can start to compare the mental health across generations. The graph shows mental health scores where higher scores reflect better health. Your information is revealing some unexpected differences. We had thought that the 1973-78 cohort’s mental health scores would continue to improve along the same lines as scores from the 1946-51 cohort. However, it appears that mental health has stabilised somewhat as the 1973-78 Cohort have hit their 40s. It will be important to see how mental health changes over the coming years. There is also a noticeable difference in mental health at age 22-27 between the 1989-95 and 1973-78 cohorts, with a high percentage of women currently in their twenties reporting psychological distress. We are continuing to analyse the information you provide to discover what supports women in gaining better mental health and in recovering from mental illness.

1 in 9 women are diagnosed with endometriosis by age 40-44.

Many women who have endometriosis feel invisible because a low level of understanding about the condition has contributed to diagnostic delays of up to 12 years. Endometriosis is a debilitating inflammatory disease, occurring when tissue that usually lines the uterus grows on other organs. It causes scarring, chronic painful periods, heavy menstrual bleeding, bowel and bladder pain, and sometimes infertility.

Diagnosis is challenging because the symptoms can mimic other conditions or are dismissed or not recognised by doctors. Surgery is currently the only way to diagnose the condition accurately. These challenges mean that we know little about the disease. Reliable, up-to-date statistics for endometriosis are urgently needed to inform guidelines, clinical practice, and policy decisions relevant to Australian women. Previous estimates of the rates of endometriosis were based on international studies.

In 2018, the Honourable Greg Hunt, Minister for Health announced the National Action Plan for Endometriosis to improve awareness and understanding of the condition. Our Study was identified as a unique data source with the capabilities to advance knowledge in the field. As part of the Plan, we were engaged to estimate – for the first time – the national prevalence of endometriosis in Australia. We used data from more than 14,000 participants from the 1973-78 Cohort to count the number of women who said they had been diagnosed with endometriosis by a doctor and linked this information to their hospital and medication records. Your data show that endometriosis is a widespread condition affecting 11% of Australian women in their lifetime. The prevalence rate is similar to, or higher than, other chronic diseases including asthma (11%), diabetes (4%), and heart disease (4%).

Around 1 in 15 (6.6%) women born in 1989–95 were estimated to have been diagnosed with endometriosis by age 25–29—a figure that is 1.7 times as high as for women born in 1973–78 at the same age.

The Australian Institute of Health and Welfare published our figures in the first national report on endometriosis in Australia. Our next steps are to identify risk factors for the disease across the life course.

A little help helps

Most women will use aged care services at some point. These services mostly start with basic home care and often involve residential aged care in the last two or three years of life. About 70% of the 1921-26 Cohort used home care support between the ages of 70 and 90. Forty-four percent were admitted to permanent residential aged care in the last few years of life.

Most women only use a few basic home services for things like domestic assistance, home maintenance, transport, nursing, meals and care coordination. However, around one in four women have more complex needs and frequently use lots of different services.

A lot of help helps even more

Importantly, we found that using home care can slow the rate of admission to residential care. Women who used more services had a significantly lower rate of admission to residential aged care than women who only used a few basic services*.

This is positive news for those of us who prefer to age in our homes, and for the Government. The Government’s policy focus is on providing services that allow us to age at home, but residential aged care facilities use up to two-thirds of aged care funding. Reducing inappropriate admissions could free resources to meet the growing demand for aged care services, and result in a better quality of life for women in their later years.

_{*Rahman M, Efird J, Byles J. Transitioning of older Australian women into and through the long-term care system: a cohort study using linked data. BMC Geriatrics 2019https://doi.org/10.1186/s12877-019-1291-z.}

A life course approach to health research focuses on the timing and duration of factors across life stages. For example, your early weight can affect the timing of your first period. In turn, things like whether you were breastfed, your childhood socioeconomic status, and the age you got your first period all factor into your age at menopause. The average age at menopause is 50-51 years. However, roughly 10% of women experience premature menopause (before the age of 40) or early menopause (before the age of 45). Early menopause is linked to cardiovascular events in later life.

By making these connections we can start to look back through the life course to understand the biological processes at work. The life course approach lets us look for events or life stages that offer the most effective timing for preventative action.

Last year, researchers were able to pinpoint when women with early and premature menopause were most at risk of suffering a non-fatal cardiovascular event like angina, stroke or a heart attack. Their findings come from the International collaboration on a Life Course Approach to Reproductive Health and Chronic Disease Events (InterLACE) project. This collaborative project pools data (including yours) from 300,000 women in 15 countries.
The researchers found that women who experienced premature menopause were nearly twice as likely to experience a non-fatal cardiac event before the age of 60 as those who went through menopause at the average age. Women who had an early menopause (before age 45) were 40% more likely to suffer a non-fatal cardiac event.

This new information gives doctors a window of opportunity to monitor women’s health and encourage preventative steps .

_{Zhu D, Chung H, Dobson AJ et al. Age at natural menopause and risk of incident cardiovascular disease: a pooled analysis of individual patient data, The Lancet Public Health, 2019.
https://doi.org/10.1016/S2468-2667(19)30155-0}

1. Improving health and healthcare services

Records such as Medicare, hospital, death and disease registers, and aged care datasets are linked for this Study. 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. For other examples, see the stories in this newsletter on endometriosis and aged care.

You can see a list of the information we currently use in our research here: www.alswh.org.au/how-to-access-the-data/external-linked-datasets.

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.

• For more details, read our privacy policy: www.alswh.org.au/privacy-policy
• See a list of the organisations involved at: www.alswh.org.au/how-to-access-the-data/external-linked-datasets/linked-data-sources

Consent

We have previously asked for your consent to health record linkage. These records are now regularly provided without your 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.

2. ‘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 receive survey reminders for people who have passed away.

3. Survey follow up

If you don’t complete your latest survey we will send reminders. These may include targeted reminders made by matching your email address or mobile phone number with social media records in a secure and confidential manner. The Study may also access the Electoral Roll to locate participants. If you do not wish to be contacted in this way, please let us know.

Contact Us

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: info@alswh.org.au
• Website: www.alswh.org.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/

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 for funding and to the women who provided the survey data.