INSPIRE Winter Issue 16 A Focus on health & medical research for children & youth

2020 | 016

A FOCUS ON HEALTH & MEDICAL RESEARCH FOR CHILDREN & YOUTH Better systems for kids with mental health problems How the first nine months moulds the rest of your life Alcohol still the leading cause of harm among young people

FOREWORD Who would have thought things would have changed so dramatically from the publishing of our last INSPIRE; our sector has been thrown into the spotlight for all the right reasons, but sadly instigated from a global crisis that has impacted our sector greatly.

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here is no doubt that Australia has responded incredibly well to this pandemic and our researchers h ave d o n e u s p r o u d a s t h ey have stood with our politicians, providing considered advice to guide decision making – as it should be – how lucky are we that this is the case. The health a nd me dica l r esea r ch se c tor have demonstrated tremendous flexibility in pivoting and innovating to meet the challenge of this coronavirus.

Thank you for all your contributions to our report for government and for participating in our survey and for so brilliantly presenting to our federal and state ministers in our briefings to keep them up to date with the research on the coronavirus.

And to showcase some of that work, we will move our data and digital technology theme to next year so the Spring issue will be dedicated to publishing your responses to COVID-19.

Given the times, many of you asked if we were keeping this issue’s focus on HMR for children and youth, and we have, for several reasons. It is an area of great importance and one requested from our members, and while COVID-19 and pandemic preparedness is crucial for us to invest in and respond to, so too is research outside of that.

Childhood is an important time for healthy development, learning, and establishing the foundations for future wellbeing. I became a mum at the end of 2018 and understand so well the importance of wanting a child to be healthy, safe and generally doing 2 INSPIRE 016 | 2020

well. But childhood is also a time of vulnerability.

Whilst overall, death rates among Australia’s infants and children have dropped substantially, fewer mothers are smoking and the rate of children under youth justice supervision also decreased there are still many areas to improve. As Director of the Telethon Kids Institute, Professor Jonathan Carapetis writes in the Last Word,

healthy upbringings lead to wellfunctioning adults and that requires us to ensure that research into the health and wellbeing of children and young people remains a priority – and we agree – it is an investment well worth making.ˮ Beyond Blue confirmed that suicide continues to be the biggest killer of young Australians with over 75% of mental health problems occurring before the age of 25.ˮ Australia will likely see increases in youth suicide and a surge in demand for specialist mental health services as the full and lasting impact of the COVID-19 pandemic is experienced across the community.

Le ading me ntal he alth ex pe r ts including Professor Ian Hickie AC and Professor Patrick McGorry AC, have called for long-term modelling and investment in mental health to guide critical decision making in social, economic, and health policy to help Australia transition out of the coronavirus pandemic. MCRI share their work in this area on page 16 which is an interesting read.

UNSW Sydney’s National D r ug and Alcohol Research Centre (NDARC) shares some alarming s t a t i s t i c s a ro u n d h ow a l c o h o l remains the leading cause of harm for young people and dispels some misconceptions.

This issue features an article on t h e i n c r e d i b l e wo r k P rof e s s o r Stewart Trost from IHBI is doing in collaboration with clinical partners at three hospitals leading research to improve the quality of life of both children fighting brain cancer and those living with bronchiectasis – one of the most neglected lung diseases It was hear tening to read that researchers from the University of Newcastle and Hunter Medical Research Institute (HMRI) believe they have solved a 75-year scientific mystery by pinpointing a cell that’s behind a raft of health conditions affecting the uterus, including endometrial cancer, endometriosis and infertility.

All of these stories serve as both sobering reminders of the need for child and youth research but also as an inspiration because of their dedication and outcomes for our future generations.

The team at Research Australia is most grateful for all the contributions to this issue, especially considering the challenging times we have all been facing in the last few months.

We are proud to share the incredible work you are doing in the sector and each issue we publish, continues to be shared broadly both nationally and internationally.

Please stay safe and here’s to research being the hero in the recovery ahead.

Nadia Levin CEO & Managing Director

Awards Gala Dinner Four Seasons Hotel Sydney Thursday, December 17

Nominations are open and close August 3 www.researchaustralia.org AWARD CATEGORIES Peter Wills Medal Advocacy Award Griffith University Discovery Award Frontiers Award Sponsored by ANU Data Innovation Award Sponsored by Bupa Health Foundation Philanthropy Award Health Services Award Sponsored by the NSW Government

Thank you to our 2020 Award Sponsors

CONTENTS

Australian Health & Medical Research & Innovation

06

Research Australia Recent Forums

12

The Health in Preconception and Pregnancy

MONASH UNIVERSITY

24

Moving our children towards better health

INSTITUTE OF HEALTH & BIOMEDICAL INNOVATION

36

How the family pet is reducing social-emotional problems for kids

TELETHON KIDS INSTITUTE

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28

Moving research guidelines

UNIVERSITY OF WOLLONGONG

38

Building Bridges between Aboriginal Young People and Mental Health Services

CURTIN UNIVERSITY

16

Better systems needed to care for kids with mental health problems

MURDOCH CHILDREN’S RESEARCH INSTITUTE

30

Tracking the quality of care for children

MACQUARIE UNIVERSITY

42

Gene Therapies – Success in treatment of SMA brings hope for children with rare diseases

SYDNEY CHILDREN’S HOSPITAL NETWORK

Publisher Research Australia Ltd Art Direction Matthew Ware p +61 403 844 763 or e matt@objktive.com For Advertising enquiries please contact the Research Australia office on p 02 9295 8546 or e admin@researchaustralia.org researchaustralia.org

INSPIRE ONLINE issuu.com/researchaustralia

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From industry project to a career in industry: How businesses are finding future STEM leaders

UNIVERSITY OF MELBOURNE

32

10 years of data points to increased harms for parental supply of alcohol to underage children

UNSW SYDNEY

44

CHRISTOPHE KEREBEL

22

How the first nine months mould the rest of your life

MONASH UNIVERSITY

34

Building a Trojan horse for brain tumours

THE KIDS CANCER PROJECT

48

Wrapping the family around congenital heart health research and practice

New CRE in youth suicide prevention laying the foundations for a new trajectory in public mental health.

AUSTRALIAN CENTRE FOR HEART HEALTH

THE BRAIN & MIND CENTRE

INSPIRE is a publication of Research Australia Ltd ABN 28 095 324 379 384 Victoria Street CHRISTOPHE KEREBEL Darlinghurst My Twitter : @chriskere CHRISTOPHE KEREBEL NSW 2010

My Twitter : @chriskere

Who can submit articles?

Any current member of Research Australia who would like to share a relevant story that affects their organisation including, philanthropic donations and their outcomes, research findings, and any other related health and medical research topic that affects the Australian population.

Submission guidelines & deadlines For information regarding how to submit and publishing deadlines visit the Research Australia website.

Disclaimer The opinions expressed in INSPIRE do not necessarily represent the views of Research Australia. Whilst every effort has been made to ensure accuracy, no responsibility can be accepted

by Research Australia for omissions, typographical or inaccuracies that may have taken place after publication. All rights reserved.

The editorial material published in INSPIRE is copyright. No part of the editorial contents may be reproduced or copied in any form without the prior permission from Research Australia. © Research Australia 2020.

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THE LAST WORD: “Children are not just little adults”.

TELETHON KIDS INSTITUTE

RECENT FORUMS Stem Cells for the Brain – Are we letting Australians down?

Research Australia shared the stage at a community Forum on March 4 hosted by Cerebral Palsy Research Institute. Dr Karl was the MC and other speakers included the Institute’s Head, Prof Iona Novak, Matthew Kiernan from the Brain & Mind Centre, MTP Connect and Dr Wendy Lipworth from Sydney Health Ethics and of course several consumers. Over 500 people registered for the event and had the opportunity to engage with the speakers and hear first-hand experiences.

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The Bupa Health Foundation partners with health and medical researchers to address the health needs of the Australian community.

Our approach to partnering includes investing in research that improves health through changes to policy practice band behaviour; collaborating with researchers across the academic, industry and healthcare sectors; advocating for those that are improving health and developing the capabilities, skills and networks of the health and medical research community.

The Bupa Health Foundation is one of Australia’s leading foundations dedicated to health, investing over $33 million since 2005.

Find out more at bupa.com.au/foundation

Health Economics Roundtable

With the introduction of the COVID-19 social distancing requirements, Research Australia quickly moved the first Health Economics Roundtable focusing on aged care policy into an online forum on April 7.

In response to the significant aged care policy issues before the Australia Government reflected in the Royal Commission into Aged Care Quality and Safety, the Roundtable focused on Aged Care Policy including the advice the Commission is receiving. It heard from research experts on residential aged care and about the policy issues and the challenges of supporting older people in their homes by the Government.

With aged care funding projected to grow from $15 billion to $80 billion over the next 30 years, Professor Julie Ratcliffe, Mathew Flinders Professor of Health Economics, Flinders University, explained that new assessment tools better suited to understanding what is important to older Australians are being developed.

The tools will cover the health of the individual, social relationships, independence and individual control, home and neighborhood, psychological and emotional wellbeing and leisure and activities.

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Professor Kathy Eagar, Professor of Health Services Research and Director of the Australian Health Service Research Institute said that with 58% of residents in Australia rated as receiving unacceptable care – at the relatively low 1-2-star level, Australia’s aged care is generally below the standard of care in the US. She recommended that this US Nursing Home Compare 5-star rating approach be adopted in Australia to suitably rate and monitor aged care.

Looking after older Australians in their homes is an important part of the aged care system, and attendees were interested in understanding where the Australian Government’s policies for in-home care are heading. Dr Nick Hartland, First Assistant Secretary, Home Aged Care Division, Department of Health, explained the need for a more consistent approach to needs-based funding and better links to mainstream community-based supports and informal care.

The Government is also focusing on more connected data systems to obtain better information from providers, assessors and funders of aged care to inform how the system is operating. Better access to information about aged care is to also incorporate quality of life surveys.

It was clear from the discussions that Australia needs to design a new aged care system based on evidence derived from research, informed by data and that reflects the needs of older people and their families.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere CHRISTOPHE KEREBEL

University Roundtable

University Feedback Forum & Roundtable Earlier this year Research Australia hosted a University Zoom Forum for our members to share the impact of COVID-19 and input on how they’d like us to support them in the Roundtables as a result.

It was clear from all representatives that the key area of concern was funding in light of the pandemic and its impact. Research Australia therefore focused its first official Roundtable of the year on this subject, convening speakers from the key funding bodies to present to attendees and address concerns directly.

• In his capacity as Research Australia Board Director and Chair of the University Roundtable, Professor Shitij Kapur, led the forum. Speakers included: • Professor Anne Kelso AO, CEO, NHMRC

Professor Ann Kelso AO

• Professor Sue Thomas, CEO, ARC • Ms Masha Somi, CEO, Health and Medical Research Office, Department of Health Professor Nellie Georgiou-Karistianis from Monash University also talked about HDR students, ramifications, complications and solutions and Prof Liz Eakin from the University of Queensland did the same with an early career researchers' lens.

The recent survey we conducted in partnership with Deakin University takes a deeper look into these areas and we will share the findings with you, as well as governments at both state and federal levels.

Dr Masha Somi

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CELL FINDING BRINGS HOPE FOR ENDOMETRIAL CONDITIONS Researchers from the University of Newcastle and Hunter Medical Research Institute (HMRI) believe they have solved a 75-year scientific mystery by pinpointing a cell that’s behind a raft of health conditions affecting the uterus, including endometrial cancer, endometriosis and infertility.

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ith a genetic signal known as Axin2, the cell primarily sparks the rapid regeneration of the womb lining (endometrium) after menstruation, according to lead researcher Associate Professor Pradeep Tanwar.

However, it also appears to fuel medical conditions in the uterus when the cell becomes dysfunctional or mutated, and potentially undermines the success of IVF. The finding therefore has potential to create several new treatment models.

Associate Professor Tanwar and his team spent seven years exhaustively testing their discovery, first made in 2012, and have just published the results in the prestigious journal Cell Stem Cell.

“We’ve known since 1944 that the epithelium [of the uterus] is shed during menses then renewed within a week, but no one has understood quite how it happens,” Associate Professor Tanwar says.

“Many groups predicted bone marrow-derived cells were responsible, and there are trials using these cells in women, but our [pre-clinical] testing has shown that it’s the Axin2 cell of the endometrium.”

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The Tanwar team collected and banked gynaecological tissue samples from hundreds of women in the Hunter Region while also developing new laboratory models to prove their finding.

As part of their investigations, they labelled the Axin2 cell with a genetic dye and discovered it was principally responsible for the development of endometrial cancer, the most common form of gynaecological cancer which is escalating due to obesity and other lifestyle factors.

Other endometrial cells might mutate as well, but this is the dominant cell type – like the queen bee in a nest,” Associate Professor Tanwar confirms. “These are also the cells that might leak out of the uterus and cause endometriosis.ˮ We found that inhibiting the cell stops the uterine regeneration process. If we inhibit it in cancer, the cancer won’t progress. Nor will endometriosis, we believe, so our next step is to develop clinical applications … looking for existing drugs that can be repurposed.”

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere CHRISTOPHE KEREBEL

Associate Professor Pradeem Tanwar

Endometriosis impacts 700,000 women in Australia, with the painful condition of ten requiring multiple surgeries and affecting fertility in more than 30 per cent of cases. Around 3000 women are diagnosed with uterine cancer each year, tragically resulting in more than 500 deaths. Less than 18 per cent of IVF cycles result in a live birth.

In January, Associate Professor Tanwar and his team were also awarded a $600,000 grant from Cancer Australia to investigate the link between obesity and endometrial cancer, to better identify and treat those at risk.

With around 60 per cent of endometrial cancers directly attributed to obesity, and the rates of obesity continuing to climb globally, endometrial cancer diagnoses are predicted to increase at a rapid rate.

“We’re expecting a 55 per cent increase in endometrial cancer rates by the year 2030,” he explained. “On top of that, endometrial cancer research has lagged behind in progress relative to its clinical impact, so there’s a desperate need for more work in the field.”

Associate Professor Tanwar and co-investigator Professor Hubert Hondermarck will explore how a key protein might play a role in the development of endometrial cancer in overweight and obese patients.

“Currently, it is unclear how fat enhances the risk of endometrial cancer, however we’ve been able to produce evidence showing that a certain protein plays an important role activating the abnormal growth of cells in the endometrium,” Associate Professor Tanwar said.

“If we can identify this protein in overweight patients and its role in the development of endometrial cancer, it will develop a strong rationale for targeting this signalling process.”

Author: A/Prof Pradeep Tanwar is an Australian Research Council Future Fellow, a Cancer Institute NSW Career Development Fellow, and group leader of the University of Newcastle and Hunter Medical Research Institute (HMRI) gynaecology oncology program.

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THE HEALTH IN PRECONCEPTION AND PREGNANCY CENTRE FOR RESEARCH EXCELLENCE

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CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere CHRISTOPHE KEREBEL

Many women will have a child or children at some point in their lives and like the rest of the population, they are not immune from the growing epidemic of obesity.

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verweight and obesity currently impacts 63% of Australian adults and 20% of children and is the fastest growing cause of chronic disease, with significant economic burden, estimated at over $8.6 billion per year1.

Young women are more likely to become overweight or obese in a short space of time than any other population group, including men. High risk periods for accelerated weight gain in young women include preconception, pregnancy and postpartum.

This is a major concern as excess weight increases the risk of developing a range of chronic diseases and of a difficult pregnancy and/or birth. In fact, for every kilogram gained above international guidelines for weight gain during pregnancy, risk of adverse outcomes increases by ~10%2.

Following childbirth, risks remain. Women retain on average between two to five kilos with each pregnancy, which drives obesity development. Those who gain above recommendations have a 300% increased risk of obesity development within two decades3.

Further, the weight of the mother can have cascading intergenerational impacts on the health of their children.

Mothers with a high body mass index can alter genetic pathways leading to overweight or obese children, who are in turn, are at greater risk of developing early onset chronic diseases such as diabetes and metabolic syndrome.

The good news is that preventive interventions during pregnancy are effective in optimising gestational weight gain and reducing complications including caesarean delivery and lower the risk of gestational diabetes development.

As women during pregnancy are highly motivated to make positive lifestyle changes to ensure the health of their baby, pregnancy is recognised as a favourable life-stage in which to intervene for improved health outcomes.

Weight gain prevention is a powerful strategy to address obesity, with potential for major benefits to health and economic burden as unanimously emphasised by 2020 | INSPIRE 016  13

Government, the World Health Organisation, the Institute Of Medicine, the Australian Medical Association and National Health and Medical Research Council (NHMRC) Translation Committee with multi-sectorial, cross-cutting efforts across population, community and individual levels required.

Our group and others, demonstrate effective prevention of excess gestational weight gain and reduced complications with healthy lifestyle intervention4. Yet whilst there is clear evidence for low-intensity, low-cost lifestyle interventions in pregnancy, no country has implemented systems practice and policy level evidence based strategies to prevent maternal obesity.

Here, an NHMRC Centre for Research Excellence (CRE), led by Professor Helen Skouteris within the Monash Centre of Health Research and Implementation, Monash University aims to improve lifestyle preconception and in pregnancy to reduce maternal obesity and related adverse health outcomes.

How can we drive evidence into practice, improve lifestyles, reduce the prevalence of maternal obesity, and improve health outcomes? Evidence synthesis, guideline development, strategic prioritised efficacy and implementation research, capacity building, national and international exper tise and collaboration with 14  INSPIRE 016 | 2020

extensive stakeholder and consumer engagement, are all crucial. The four main areas of focus of the Health in Preconception and Pregnancy (HiPP) CRE are: 1 Generate new knowledge on: a) adapting, codesigning and testing models of preconception lifestyle care; b) implementing and evaluating the integration of lifestyle intervention into routine antenatal care; c) co-designing and testing culturally relevant models of preconception and pregnancy lifestyle health care; and d) estimating the economic implications of pregnancy lifestyle interventions.

2 Translate this new knowledge into policy and practice through our extensive professional networks and leadership roles; consumer and community involvement; knowledge synthesis, dissemination and exchange strategies and through up skilling health professionals.

3 Develop a multidisciplinary research workforce in preconception and pregnancy lifestyle health promotion by building capacity in early- and mid-career researchers and the clinical workforce, with mentoring and training programs by world leading national and international experts.

CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere CHRISTOPHE KEREBEL

Cheryce Harrison

4 Leverage our extensive existing multidisciplinary collaborations and proven track record of translation into policy and practice to apply CRE knowledge on “how” to prevent maternal obesity with translation of evidence into policy and practice to deliver on the multimillion investment in research to date.

The HiPP CRE will generate vast new knowledge and consolidate existing knowledge, via: • quantitative and qualitative methodologies, • systematic reviews and meta-analyses, and • audits of current guidelines and best practice across research streams and themes.

This knowledge, presented as evidence summaries and lay fact sheets of our guidelines and published peer reviewed papers, will be centralised in a knowledge synthesis hub on a CRE website for broad dissemination via established networks.ˮ Most importantly, this body of work will add to the depth and breadth of knowledge on contributors to weight gain in reproductive aged women, the sequential health impacts on both mother and child, and effective

approaches to augment health literacy and prevent obesity and chronic disease risk in Australian women and their families.

1. Australian Institute of Health and Welfare 2017. A picture of overweight and obesity in Australia 2017. Cat. no.PHE 216.

Canberra: AIHW. 2. Cedergren MI. Optimal gestational weight gain for body mass index categories. Obstet Gynecol. 2007;110(4):759-64.

3. Fraser A, Tilling K, Macdonald-Wallis C, et al. Associations of Gestational Weight Gain With Maternal Body Mass Index, Waist Circumference, and Blood Pressure Measured 16 Years After Pregnancy: The Avon Longitudinal Study of Parents and Children.

Obstet Gynecol Surv. 2011;66(10):599-610.

4. Effect of diet and physical activity based interventions in pregnancy on gestational weight gain and pregnancy outcomes: metaanalysis of individual participant data from randomised trials. BMJ. 2017;358.

Authors: Cheryce Harrison (PhD) and Rhonda Garad (PhD). Monash Centre for Health Research and Implementation, Monash University

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BETTER SYSTEMS NEEDED TO CARE FOR KIDS WITH MENTAL HEALTH PROBLEMS As anxiety, depression and self-harm presentations at emergency departments rise, health professionals are calling for a new approach that provides families with better community based support.

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CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

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My Twitter : @chriskere CHRISTOPHE KEREBEL

ental health related emergency department visits in Victoria for children and adolescents are increasing three times faster than physical health presentations. But this growth rate is not related to population growth and comes despite a significant increase in investment across adolescent mental health services.

New research led by the Murdoch Children’s Research Institute (MCRI) has found a complete shake-up of the Australian health system is needed to better care for children and young people with mental health issues like anxiety, depression and self-harm.

Three new studies, published in Emergency Medicine Australasia and The Journal of Paediatrics and Child Health, identified solutions to ease demand on emergency departments.

These included: • Increased Medicare funding for family therapy; • Additional out-of-hours services; • R espite care and peer support for more complex mental health problems; and • S chool-based services offering onsite, bulk billing psychologists and teachers trained to identify ‘at risk’ students.

Researchers examined those aged 17 and under who visited four emergency departments across Victoria and who had been discharged with a diagnosis of anxiety or depression. They asked parents why they had brought their child to the ED and what would have helped them seek treatment in the community instead.

They also measured repeat visits to one emergency department in Victoria for self-harm in children up to 18 years old. Almost one in four patients re-presented for self-harm within 12 months and 82 per cent of all selfharm presentations were by girls.

In Victoria, mental health related emergency department visits increased by about 6.5 per cent each year for those aged 0-19 years between 2008/09 and 2014/15, with a sharp rise in anxiety and depression in those aged 10 years and older.

The new research comes as the Victorian Government’s Royal Commission into the state’s mental health system will deliver its final report in October 2020.

Researchers from MCRI, alongside Melbourne Children’s Campus partners The Royal Children’s Hospital and the University of Melbourne’s Department of Paediatrics, contributed to the Terms of Reference for the Commission.

Their submission stated that child mental health services have been relatively neglected from a resource perspective, and a very different approach was required to improve the mental health of Victorian children.

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MCRI Professor Harriet Hiscock, who led the research, said many Australian children with mental health problems do not receive enough mental healthcare in the community such as from school counselors, psychologists and paediatricians, which could be behind the increase in emergency presentations.

Parents reported barriers to accessing help for their child, which included service shortages and long wait lists, under-resourced schools, lack of child mental health expertise by their usual doctor and financial constraints.

There was also dissatisfaction with inpatient and outpatient services for child mental health, finding them to be in scarce supply, especially after hours or during school holidays.

Additionally, some families had no alternative but to resort to the ED because their child was too young (under 16 years) to access a mobile crisis assessment team (CAT).

However, some parents of those aged 16 and over were also told their child was ineligible for CAT assistance.

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Professor Hiscock said a large majority of parents felt strongly that basic mental health care should be made publicly available for all children and young people, without service limitations.

For many families, capping of the Medicare-subsidised mental health care rebates to 10 sessions per year severely limited their child’s access to ongoing care,” she said.

Professor Hiscock said policy makers, managers, and clinicians must now work together with parents to develop alternative approaches that provide families with community based support for those with mental health concerns.

“There is a big gap in services for kids aged 12 and under, especially if a family cannot afford to pay for a private specialist; Most services also shut down over school holidays, leading some parents to seek support from emergency departments.”

CHRISTOPHE KEREBEL

Professor

CHRISTOPHE KEREBEL CHRISTOPHE KEREBEL

My Twitter : @chriskere Harriet

Hiscock

Dr John Cheek

Professor Hiscock said to help keep children who repeatedly self-harm out of emergency would likely require a team-based strategy comprising coordinated ‘wrap around care’ for the child and their family in their community setting.

“This intensive service model would see the young person assigned a case manager, who, with the young person, their family and other experts, devise, implement and evaluate a treatment plan over time.”

Dr John Cheek, Research Associate, Emergency at MCRI, said the research found the key reasons families presented to EDs were listening to trusted professionals; feelings of desperation and having no alternative; respecting their child’s need to feel safe; and to rule out a potentially serious medical condition.

“While about half of the families were referred to an emergency department by a healthcare provider, school or emergency services officer, only a quarter had physical symptoms which were deemed as urgent.”

Authors: Professor Harriet Hiscock is a consultant paediatrician and National Health and Medical Research Council Practitioner Fellow. She is Group Leader, Health Services, at the Murdoch Children’s Research Institute, Associate Director, Research at the Centre for Community Child Health, and Director of a children’s hospital Health Services Research Unit.

Dr John Cheek is a Paediatric Emergency Physician and Deputy Director of Emergency Medicine at a children’s hospital. He is a Research Associate, Emergency, at the Murdoch Children’s Research Institute, and an Honorary Senior Fellow with the Department of Paediatrics at the University of Melbourne.

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FROM INDUSTRY PROJECT TO A CAREER IN INDUSTRY: HOW BUSINESSES ARE FINDING FUTURE STEM LEADERS Teams of Masters students from the University of Melbourne work collaboratively to deliver innovative thinking and tangible solutions to their industry partner, giving students a chance to experience real-world challenges, while providing the industry partners access to some of Australia’s best and brightest minds. VivaZome Therapeutics even employed a student after the project finished!

VivaZome team presenting a poster at the 2020 Australasian Extracellular Vesicles Conference (AEVC).

The people in the photo are [from left to right]: 1. Craig Newton, Non-Executive Director 2. Xenia Sango, Clinical and Regulatory Consultant 3. Monika Janinski, Project Officer and Regulatory Affairs Officer 4. Ian Nisbet, Chairperson 5. David Haylock, Chief Executive Officer 6. Louise White, Quality Consultant 20  INSPIRE 016 | 2020

CHRISTOPHE KEREBEL

M

CHRISTOPHE KEREBEL

onika Janinski was a Master of Biotechnology student at the University of Melbourne when she participated in an industry project with VivaZome Therapeutics (an Australian biotech company developing and commercialising exosomebased therapies). Today she works at VivaZome as Project Officer and Regulatory Affairs Officer.

For almost a decade, graduate students in the Faculty of Science at the University of Melbourne have been demonstrating their skills and knowledge in the STEM sector through industry projects. Master’s level students in the areas of Biotechnology, Data Science or Environmental Science are required to complete the Industry Project subject. The Industry Project allows students to spend a full academic year working in teams of 3-5 as consultants on a business problem or challenge defined by their assigned host organisation.

The projects offer students a unique opportunity to gain practical, meaningful experience of the STEM workplace, build long lasting relationships in their field, and progress towards their degree. The industry partners gain access to the best and brightest new talent in the sector - a dedicated team working on a research or problem-solving project - and a chance to engage with the University’s world-class technology and research.

Ian Nisbet, Chairman of VivaZome, is currently hosting his seventh (and VivaZome’s fourth) Biotechnology Industry Project with University of Melbourne students. As Ian’s career has moved him between roles and different organisations, he has carried his enthusiasm for hosting industry projects with him.

Ian initially thought the Industry Project seemed like a useful program for small companies to tap into, allowing them to get work done on a project of interest. “I hoped that we would get a few useful insights as well as helpful reference materials from each project,” he says.

But the outcomes of the Industry Projects exceeded his expectations. Ian says the Industry Project teams delivered results that were more in-depth than he anticipated, with detailed presentations and, in many instances, the data and reference materials have become valuable assets integrated into company strategy. And the Industry Project provides even more tangible, long-term benefits, as former student and now VivaZome employee Monika Janinski can testify.

Monika was particularly interested in learning how her interest in life sciences could be translated into tangible health benefits, and the chance to work on an Industry Project was a key part of her decision to enrol in the University of Melbourne’s Master of Biotechnology course.

“I saw it as a bridge to professional employment,” Monica says. “I knew that employment experience is generally both the most important aspect that employers look for, and the most difficult to obtain for students entering the workforce.”

My Twitter : @chriskere CHRISTOPHE KEREBEL

She says the experience gave her extra confidence, showed her the crucial impor tance of proactive, professional communication, provided a chance to build real relationships at VivaZome, and helped her decide the company would be a good fit for her.

“I felt comfortable with everyone and felt that they were very friendly, welcoming, and enthusiastic.”

For Ian, discovering and building relationships with talented students like Monika has been one of the key benefits of the Industry Projects. “It is interesting (as an outsider) to observe how the students work together, who asks the best questions, who naturally takes on a leadership position, etc. In Monika’s case, what impressed us was her quiet confidence, her organizational skills, her enthusiasm to learn.”

While not everyone gains direct employment through an Industry Project, Ian says he is still in contact with a number of the students who he has worked with over the years. “I’ve given several references when they’ve applied for positions with other companies and they touch base every so often to let me know what’s happening with their careers.”

As an industry host, Ian also has access to the wider University of Melbourne community. He met Professor Mark Rizzacasa at a University function, which led to an on-going collaboration: “I spoke with Mark at the breakfast and, resulting from that conversation, Mark has been a consultant for the company, not VivaZome, for the past 2 plus years.”

Ian encourages any organisation who thinks they could benefit from an Industry Project to get involved. “The outcomes are worth the effort,” he says.

The University of Melbourne currently has 51 active projects across the 3 Master courses, Biotechnology, Data Science, and Environmental Science. Some industry partners are hosting projects in multiple courses, as their business needs cut across these different fields of study.

If your organisation can value from engaging with future STEM leaders, and you are interested in partnering with the University of Melbourne on an Industry Project, please contact David Rogers (david.rogers@unimelb.edu.au), Manager, Careers and Industry in the Faculty of Science.

Authors: Zora Sanders, Careers & Industry Officer, Faculty of Science The University of Melbourne

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HOW THE FIRST NINE MONTHS MOULD THE REST OF YOUR LIFE Pregnancy – the New Frontier

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n this age of health consciousness, people spend endless time mulling over food fads, diet regimes, membership of gyms, ‘nature foods’…sound familiar? Not many people think about what made us who we are, or why some of us are more prone to obesity, diabetes, high blood pressure or heart attack.

Conventional answers lie in ‘genes’ or ‘lifestyle’ or even destiny (it was meant to be like this).

Heart diseases have long been considered diseases of ‘affluence or lifestyle’. But there’s another powerful influence which you might not have thought of, and that is the kind of nutrition received during fetal life (before birth).

This period is the most consequential period of our lives, permanently influencing the wiring of the brain and the functioning of key organs such as the heart.

Prof Amartya Sen, Nobel laureate said, ‘Poor prenatal experience sows the seeds of ailments that afflict adults’.

Fetal growth restriction (FGR) denotes birthweight <10th percentile for gestational age and sex, a cut-off that significantly increases the risk of death before or soon after birth. Thousands of births worldwide are affected annually, making FGR-associated adult-onset cardiovascular 22 INSPIRE 016 | 2020

diseases (CVD) a major public health issue.

CVD are also a leading global cause of death. The impact transcends generations; women giving birth to FGR infants are themselves more likely to experience the composite outcome of hospitalisation for heart failure, abnormal heart rhythm or death from CVD. Epidemiological studies established a direct correlation between low birthweight and CVD (including hypertension) in adulthood. Professor David Barker, British epidemiologist, noted a link between low birthweight and CVD at ages 55-70 years.

The findings of Barker’s Hypothesis, first proposed in 1989, have been assessed more than 20 times in different populations around the globe. It remains one of the most solidly replicated theories of our times. Interestingly, there was a passing mention that the key link between low birthweight and future heart diseases could be vascular morphology and compliance. In a series of recent research articles, we have mapped out how FGR influences the cardiovascular journey from fetal life to adolescence.

Using state of the art vascular ultrasound, we studied the arterial properties of FGR infants. We noted that

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A

C

B

D

indeed, as proposed by Professor Barker in 1989, their vessels were thicker, stiffer, and had low compliance in comparison with appropriately grown infants. What was important however, was the fact that we made these findings at assessments done within the first two weeks of age; indicating that influences initiated and amplified during pregnancy have a major bearing. Essentially, these blood vessels had undergone ‘early ageing’; behaving as vessels of a 60-year-old person.

These infants also had significantly higher blood pressure though were not clinically hypertensive. Importantly, blood pressure tracking develops very early on- ~ 6 months of age. This means, investigators can identify the at-risk population with reasonable confidence. In addition, the hearts of these otherwise clinically well and asymptomatic infants were hypertrophied and unable to relax well.

Given our research picked up these changes very early in life (first fortnight after birth), whatever else happens in these individuals’ lives in future years (such as sedentary lifestyle, smoking, diet rich in saturated fats), may all compound the impact of ‘fetal programmingˮ.

The heart (and the vessels) bear the brunt of maladaptation due to events happening before birth. Essentially, fetal events lead them on to a trajectory of poor cardiovascular health. A poorly functioning placenta leads to a diversion of nutrients while skimping on other organs (heart), a debt that comes due later in the form of a weakened heart during adulthood.

Adopting such a life course perspective allows the identification of high risk populations earlier, with the possibility of nutritional and other lifestyle interventions.

Timely, relatively modest, interventions in early life can have a large effect on disease risk later. Such preventative

E measures require a long term investment, but are more likely to be effective than treatments administered after the disease manifests.

The accompanying photographs (with parental permission) are of a set of twins who are now three years old. They had to be delivered at 29 weeks’ gestation (full term is 40 weeks) due to falling weight and well-being of the baby girl. She weighed 592g (FIG A) and stayed in the hospital for 322 days while her brother weighed 1509g (FIG B) and was discharged after 59 days.

To save the baby girl’s life, she had to be given special medicine (an ACE inhibitor) to lower her blood pressure, change the dynamic functioning of her blood vessels and the heart, as well relieve back pressure in the lungs.

Dr Arvind formed a group of six infants in whom this turned out to be life-saving, when all other medications were unsuccessful. As three year olds, both Mila and Kai are thriving (FIG C & D); Mila incidentally wants to become a doctor herself (FIG E). We are now in the process of trialling these medicines in-utero in animal models, to assess whether they are safe during pregnancy as well.

The question is if we notice such changes in the arteries in the first week of life, is it already too late to intervene? Early interventions might be needed during pregnancy. Given the potential for interventions to cause serious harm during pregnancy, compelling evidence of safety will be needed before their evaluation. Our current research using various medications is now focussed on the therapeutic potential of such interventions. Pregnancy is the new frontier making the womb a promising target for prevention, raising hopes of conquering public-health scourges like obesity and heart disease through interventions before birth.

Author: Dr Arvind Sehgal, Head, Cardiovascular Research, Monash Children's Hospital & Professor of Pediatrics, Monash University

2020 | INSPIRE 016 23

MOVING OUR CHILDREN TOWARDS BETTER HEALTH

Therapeutic exercise is gaining recognition as an important element in improving health trajectories, especially for at-risk children.

P

rofessor Stewart Trost is collaborating with clinical partners at three hospitals and leading research to improve the quality of life of both children fighting brain cancer and those living with bronchiectasis.

Professor Trost mentors a research team in paediatric exercise, using his expertise in interventions for young patients with chronic health conditions, at the Institute of Health and Biomedical Innovation.

He is based at the Centre for Children’s Health in South Brisbane, established to facilitate collaboration with clinicians at the adjacent Queensland Children’s Hospital (QCH).

Support for Professor Trost’s research includes a National Health and Medical Research Council Project grant to expand on findings from a pilot project that found children with bronchiectasis had insufficient levels of activity for a health benefit.

He also leads research into the effects of therapeutic exercise in survivors of common brain tumours in children, as part of the Centre for Child and Adolescent Brain Cancer Research (CCABCR).

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Professor Stewart Trost

BRONCHIECTASIS

Bronchiectasis (BE) is one of the most neglected lung diseases, with permanent enlargement of parts of the airways of the lung causing symptoms including a chronic cough, mucus production, shortness of breath, coughing up blood and chest pain. People with BE frequently have lung infections that result in hospital admissions.

Professor Trost aims to determine if regular exercise will improve aerobic fitness and health-related quality of life in children, reduce the frequency of BE exacerbation and ultimately prevent a decline in lung function and disease in later life.

He led the world’s first study of physical activity and sedentary behaviour in children with BE, finding few of them achieved the recommended 60 minutes of daily moderate to vigorous physical activity.

26 INSPIRE 016 | 2020

Obesity is common among adults with BE and is associated with worse health-related outcomes. A recent study of 133 adults with BE also reported that 21 per cent had depression and 40 per cent had anxiety.

The poor health trajectories for people with BE start early in life, with a lack of fundamental movement skills (FMS), critical to establishing complex movement patterns needed in play, games, physical activities and sports.

“Children who are proficient in such movement skills are more likely to participate in – and enjoy – physical activity, achieve higher levels of aerobic fitness, exhibit higher levels of perceived competence and self-esteem, and are less likely to be overweight or obese,” Professor Trost says.

We recently found that children with BE exhibit significant delays in their FMS development, thus compromising their ability, confidence and motivation to participate in physical activity.”

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Professor Trost is addressing the issues with a tailored eight-week program that promotes exercise, increases physical capacity and overcomes barriers to physical activity.

Children aged 6-12 years will be recruited from the QCH, Gold Coast University Hospital (GCUH) and Royal Darwin Hospital.

The research aims to prevent the children experiencing BE exacerbation, which is the only known risk factor for compromised lung function and increased morbidity later in life.

Lung function will be monitored, along with aerobic fitness, quality of life and FMS proficiency, while taking into account variables such as age, gender, parental age and education levels as well as family structures.

Professor Trost will collaborate with IHBI Professor Anne Chang, a paediatric respiratory physician and researcher in cough, bronchiectasis and evidence-based medicine related to children; and QUT Science and Engineering Faculty Associate Professor Chris Drovandi, contributing skills in applying computational statistics.

Contributing expertise in clinical service delivery and costings are fellow paediatric respiratory physicians Associate Professor Brent Masters, from the QCH, and Dr Vikas Goyal from the GCUH; and Griffith University physiotherapist Taryn Jones.

We, as a team, believe that our therapeutic exercise program shows promise as an important clinical management strategy for preventing future decline in lung function and respiratory health in later life,” Professor Trost says.

BRAIN CANCER

The program aims to improve their fatigue, mobility, cognitive function and goal attainment as they recover from the most common brain tumours in children.

A d v a n c e s i n n e u r o s u r g e r y, r a d i o t h e r a p y a n d chemotherapy have resulted in survival rates increasing dramatically in recent decades, with five-year survival rates between 60 and 90 per cent, depending on the specific tumour type.

Improved survival rates present a challenge in managing short- and long-term physical, neurologic and cognitive complications resulting from tumour and treatment.

Relative to their healthy peers, paediatric survivors of a PFBT have reduced cardiorespiratory fitness, physical and neurocognitive function,” Professor Trost says. “The deficits persist into adulthood, leading to activity limitations and an increased risk for disabling secondary conditions such as obesity, cardio-metabolic disorders and poor psychosocial functioning.”

The research aligns with one of the CCABCR’s three streams, mirroring patient experience in survivorship.

The CCABCR is Australia’s first research centre solely focused on paediatric brain cancer, treatment, and survivorship, bringing together researchers, doctors and facilities to double survival rates and improve the quality of life of people with brain cancer. The longer-term aim is to defeat brain cancer.

Centre collaborators include researchers from QUT, QIMR-Berghofer and the University of Queensland as well as clinical infrastructure and specialists from Children’s Health Queensland Hospital and Health Service.

Therapeutic exercise is also playing a major role in the research Professor Trost is conducting in collaboration with QCH paediatric oncologist Dr Tim Hassall and physiotherapist and IHBI PhD candidate Brooke Kohler.

A 12-week program will involve survivors of childhood posterior fossa brain tumours (PFBT) taking part in exercises while their cardiorespiratory fitness, muscular strength, mobility, physical activity habits and quality of life is monitored.

Authors: Erik de Wit, Communications Program Coordinator Institute of Health and Biomedical Innovation, (IHBH)

2020 | INSPIRE 016 27

MOVING RESEARCH GUIDELINES Through the creation of an international database and the application of innovative analytics, Dr Dylan Cliff, Associate Professor Janette Green and an international team of experts are collaborating to determine the optimal daily balance of movement behaviours that young children need to best support their development, well-being and learning outcomes.

Left: A/Prof Janette Green Right: Dr Dylan Cliff

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n April 2019, following on from the release of the Early Years (0-5 years) guidelines in 2017, the Australian Minister for Sport, Senator the Hon. Bridget McKenzie and University of Wollongong (UOW) physical activity expert Professor Tony Okely launched the new Australian 24-Hour Movement Guidelines for Children (5 to 13 years) and Young People (14 to 17 years).

Since their release the reports have attracted more than 60 million media impressions worldwide. There is widespread interest in the recommendations with the general population keen to answer the question “How much daily physical activity, sedentary behaviour and sleep is associated with the best physical, socialemotional, cognitive and motor development outcomes for young children?”

These guidelines are based on the best available evidence, were developed by experts and stakeholders from across Australia and were designed to give parents and carers the best and current practical advice on healthy daily practices for children and adolescents.

They recommend children and young people participate in a range of physical activities, get good quality sleep, and limit screen time and prolonged sitting in order to optimise their physical and mental health, emotional regulation and social behaviour, and academic achievement and cognitive development.

Since previous Guidelines were released in 2012, the use and popularity of hand-held technologies such as phones and tablets and associated apps – especially ones targeting children and young people – have proliferated exponentially. With this in mind, the new Guidelines advised limiting sedentary recreational screen time, but they drew a distinction between recreational screen time and the use of electronic media for educational purposes.

The forces of technological change are increasingly disrupting existing research findings and providing compelling paths to improved knowledge, a fact Early Start’s Dr Dylan Cliff (who was a member of the leadership group that developed the existing guidelines) is fully aware of.ˮ His team believe that movement behaviour data could be collected and analysed more effectively, to take into account this daily mix of activity. In previous studies sleep, sedentary behaviour and physical activity have been considered in isolation and investigated as separate behaviours. Cliff’s team believes this view could be problematic because in reality movement behaviours are not independent of each other. Rather they are codependent - when time in one behaviour is altered it must cause an equal and opposite change in time spent in one or more of the others across the 24-hour day.

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“Following discussions with colleagues about the development of an international movement behaviour database and how this could inform the guidelines, I contacted Associate Professor Janette Green (from UOW’s Faculty of Business and ASHRI) who has expertise in health databases. Through funding from UOW’s Global Challenges program we were able to hold a meeting to bring together a team of international researchers to plan the SADEY project (the Sleep and Activity Database for the Early Years) and apply for funding through the Australian Research Council,” says Cliff.

The ARC has provided three years of funding to develop the first comprehensive international database of young children’s movement behaviours by harmonising secondary data from at least 15 different studies. This will enable the analysis of data from over 14,000 participants, wearing the same objective wearable activity trackers.

Colleagues and researchers from universities around the world will partner with UOW in developing the database.

The sheer scale of this collaboration makes this project impressive, but it’s the technology of new data analysis tools and cross-pollination of research techniques from other sectors that make this project all the more exciting.

“We’ll borrow analytical techniques called “compositional data analysis” or CoDA from our colleagues in other fields.

Developed more than 40 years ago and used in geology and other disciplines, but new to our field, CoDA will help us discover the best daily mix of movement behaviours for healthy child development. This approach will allow us to treat movement behaviour data as inter-related (i.e. a composition) and part of a finite whole. These analyses will also allow us to identify the optimal levels of each behaviour that result in the best developmental outcomes for children,” says Cliff.

“By bringing in additional database expertise to combine many datasets, plus the new-to-the-field statistical analysis techniques, this project will open research opportunities that wouldn’t be available otherwise,” says Green who is often called on for her expert statistical skills on projects, primarily in classification development, benchmarking and outcome measurement.

In the meantime while data is collected, analysed and scrutinised, Cliff believes The Australian 24-Hour Movement Guidelines for Children are the best place to start when considering young children’s healthy balance of physical activity, sleep and sitting time each day.

Authors: Dr Dylan Cliff Senior Lecturer, Faculty of Social Sciences Early Start Research School of Education University of Wollongong & A/ Prof Janette Green Faculty of Business Australian Health Services Research Institute

2020 | INSPIRE 016 29

TRACKING THE QUALITY OF CARE FOR CHILDREN When results from the CareTrack Kids project were published in one of the world’s prestigious medical journals, the Journal of the American Medical Association (JAMA), the Editor-in-Chief of JAMA Network described it as “one of the most important papers in child health in the last 5 years”.

M

ost Australian children will visit the GP or paediatrician at least once a year – however, the quality of this routine care is rarely assessed. The CareTrack Kids project, led by the Australian Institute of Health Innovation at Macquarie University, came about to fill this evidence gap.

A LANDMARK STUDY FOR CHILDREN’S HEALTHCARE

CareTrack Kids is a landmark national study investigating the standard of healthcare provided to children in Australia.

With a broad range of partner organisations, CareTrack Kids examined 17 common childhood conditions, and measured adherence by GPs and paediatricians to clinical practice guideline (CPG) recommendations.

The project concluded that, among a sample of children receiving care in Australia, the overall prevalence of adherence to quality of care indicators for important conditions, hovering at around 60% on average, while good, and very good for some conditions, nevertheless showed room for improvement.

There was wide variation in adherence to guidelines by clinical condition, from almost 89 per cent adherence on average for the management of autism, to 44 per cent for tonsillitis. Children with tonsillitis, gastroesophageal reflux disease and upper respiratory tract infections received care least in line with guidelines. Mental health conditions, diabetes and head injuries received care most in line with 30 INSPIRE 016 | 2020

guidelines. (Rates for each condition are listed in Tables 1 and 2 and, for more detail, journal articles on most conditions are listed on the website.)

In practice this means, for example, that greater adherence to CPGs could improve the care of children with gastro-oesophageal reflux disease. In 41% of cases, children under 1 year old with reflux who are otherwise healthy, and thriving are being treated with acid suppression medication at the first presentation.

CPGs do not recommend this and, in fact, the evidence of effectiveness of acid suppression medication in infants is not strong and is associated with increased infections.

For children with diagnosed autism, care in line with CPGs was delivered almost 9 in 10 times. For example, one of the clinical indicators assessed revealed that most children are being appropriately referred to occupational therapists and speech pathologists.

NATIONWIDE RESEARCH

While strict adherence by a GP or paediatrician to CPGs is not always appropriate—some patients have more complex needs or special circumstances— we do know that the effective and timely use of guidelines contributes to a higher standard of care for the community. CPGs are based on level 1 or consensus evidence and provide valuable guidance in the majority of cases.

To do studies like this is very exacting and costly. In order to study best practice care, recommendations were first

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TABLE 1

Conditions treated most in line with clinical practice guidelines

Autism

88.8%

ADHD

83.6%

Anxiety

80.8%

Head injury

78.3%

Diabetes

75.8%

Depression

71.5%

Abdominal pain

69.9%

Croup

69.8%

TABLE 2

Conditions treated least in line with clinical practice guidelines

extracted from CPGs for 17 common clinical conditions (see Tables 1 and 2 for the complete list).

For these 17 conditions, 479 quality indicators were identified by exper ts in each field for what could reasonably be expected to apply to children in Australia for the period of the study.

Then the medical records of 6,689 children (under 16 years of age) who visited emergency departments, were admitted as inpatients, or visited paediatricians and general practitioners in three Australian states were reviewed against the recommendations. Overall, 160,202 quality indicator assessments were undertaken.

WHERE TO NOW

While CareTrack Kids provides a clear picture of adherence rates to CPGs, and highlights areas for improvement, what it also reveals are the barriers to implementing high quality care.

Our health professionals are highly trained and dedicated, but the system needs modifying to support them.

Improvements could include advancing the design of electronic medical records in order to give clinicians ready access to real-time information. Also collecting patient data in a more structured way when the child is being treated may better support the clinician’s decision making and provide richer information to their carers.

CareTrack Kids is the largest study of its kind and is only

Tonsillitis

43.5%

Gastroesophageal reflux disease

52.8%

Upper respiratory tract infection

53.2%

Fever

53.5%

Otitis media (middle ear infections)

58.0%

Asthma

58.1%

Eczema

59.2%

Bronchiolitis

59.3%

Acute gastroenteritis

59.6%

the second study of large-scale evidence-based care delivered in paediatrics, the previous being published from US data in 2007. The findings from CareTrack Kids are similar to previous population-level estimates of quality of care for adults in the United States (55%) and the Australian Institute of Health Innovation’s adult study undertaken in Australia (57%).

While the results from CareTrack Kids are as good as elsewhere in the world, Australia can do even better.

Authors: Professor Jeffrey Braithwaite, Founding Director, Australian Institute of Health Innovation; and Associate Professor Peter Hibbert, CareTrack Kids Program Director, Australian Institute of Health Innovation – Macquarie University

2020 | INSPIRE 016 31

10

YEARS OF DATA POINTS TO INCREASED HARMS FOR PARENTAL SUPPLY OF ALCOHOL TO UNDERAGE CHILDREN Alcohol is a leading cause of harm among young people worldwide, yet there is a common belief among parents that giving alcohol to their adolescent children teaches responsible drinking and reduces the risk of alcohol misuse later in life.

A

ustralian parents often believe that it is their role to teach their children when, where and how to drink.

use, family and peer relationships, family history of alcoholrelated problems, alcohol-specific rules and access, and child mental health and behavioural problems.

This common view is reflected in alcohol supply laws in Australia where it is illegal to sell alcohol to minors, but not illegal for parents to supply their children in certain contexts.

However, far from parental supply protecting children from future harm, it appears quite the opposite is true.

Over the past 10 years, APSALS has delivered significant findings to dispel misconceptions.

BINGE DRINKING RISK

The Australian Parental Supply of Alcohol Longitudinal Study (ASPALS) conducted by The National Drug and Alcohol Research Centre (NDARC), UNSW Sydney, has been collecting data for 10 years from a cohort of over 1,900 Australian school students and their families.

Parental supply of alcohol across adolescence (as compared to no parental supply of alcohol) saw greater risk of binge drinking and alcohol-related harms, with around a 50 per cent increase in risk in the year after parental supply occurred, and around a 20 per cent increase in risk two years after parental supply.

Surveys have addressed areas related to quantity and frequency of alcohol consumption including supply, supervision and context of supply and consumption. We have also been surveying parental modelling of alcohol

In addition, earlier initiation of parental supply increased risk of binge drinking and experiencing any alcohol-related harms, with the risk increasing around 10 per cent for each year earlier that parental supply began.

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PARENTAL SUPPLY DURING ADOLESCENCE

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Our research contributes to a growing body of evidence that suggests that parental supply of alcohol increases risk of harm, with no evidence for any protective effects.

The results suggest that any parental supply of alcohol should be avoided, particularly in early adolescence.

This discussion is particularly relevant now, given that the Australian National Health and Medical Research Council recently released its updated guidelines on alcohol, which have a notably more cautious recommendation on the supply of alcohol to children.

Where the previous recommendation was to avoid alcohol until age 15 and limit alcohol as much as possible until age 18, the revised guidelines recommend avoiding alcohol entirely until age 18.ˮ FURTHER RESEARCH NEEDED

Dr Philip Clare

Dr Amy Peacock

There is still uncertainty about whether these findings generalise to other settings outside of Australia. According to the OECD Health at a Glance Report 2019, alcohol consumption in Australia is relatively high, with Australians consuming 9.2 litres of alcohol on average in 2017 (similar to the United Kingdom at 9.7 litres/person), above average for OECD countries.

According to the National Drug Strategy Household Survey, around a quarter of Australians age 14+ drank at risky levels at least monthly in 2016. Thus, the effects of parental supply may be linked to relatively harmful patterns of alcohol consumption in the population, rather than inherent risks of parental supply.

Our findings over the past 10 years of research support the recent Australian government recommendation that any alcohol consumption in adolescence should be avoided.

NOT A PROTECTIVE FACTOR

There is no evidence parental supply of alcohol during adolescence acted as a protective factor for adolescent or early adult alcohol-related harms, including binge drinking.

While there was less evidence that parental supply increased the risk of alcohol use disorder, there was no evidence that parental supply was protective against alcohol use disorder.

Given that alcohol use disorder is relatively rare in adolescence and early adulthood, peaking in the mid-20s, the study will continue to examine the relationship between parental supply of alcohol and the development of alcohol use disorder during this peak period of risk. It is possible that the increased risk of binge drinking and alcohol harm observed in adolescence and early adulthood may lead to more severe harms later in adulthood.

The National Health and Medical Research Council is funding the APSALS project from 2018-2022, which allows us to continue following participants until they are aged approximately 23-24 years old. This has established our cohort as an international landmark study, allowing us to answer the important question of how parental supply of alcohol in early adolescence impacts upon alcohol use and harms in late adolescence and early adulthood.

Authors: Dr Amy Peacock (BA Hons, PhD) is a Senior Research Fellow at the National Drug and Alcohol Research Centre (NDARC), University of New South Wales, She currently holds a National Health and Medical Research Council Investigator Fellowship (2020-2024).

Dr Philip Clare is a Biostatistician, with a PHD in Biostatistics which focused on causal inference in longitudinal data. He currently consulting on a variety of projects for the NDARC.

2020 | INSPIRE 016 33

BUILDING A TROJAN HORSE FOR BRAIN TUMOURS The brain’s natural defence mechanisms make treatment of brain tumours extremely difficult. One researcher with a very personal childhood cancer connection is hoping to change that.

T

he human body has evolved so that the brain is protected at all costs. Between the brain and other systems, including the blood system, there is a highly protective barrier that prevents toxic substances entering the brain.

Associate Professor Joshua McCarroll, UNSW Sydney

Tragically, for children suffering brain cancers such as medulloblastoma, this means it is also extremely difficult to treat brain tumours with traditional drugs that have proved effective in other parts of the body.

Most chemotherapy drugs have difficulty in penetrating the blood-brain barrier. “If you do want to get the drug crossing to the brain tumour, you have to use high concentrations for it to have an effect, but the consequence of that is long-term side effects for these kids,” says Associate Professor Joshua McCarroll, Team Leader of the Gene Therapeutics and Drug Delivery group at the Australian Centre for NanoMedicine, UNSW Sydney.

Joshua is also a survivor of childhood cancer.

“You’ve got some kids at the age of five to ten who may survive the cancer because the treatments are good, but the consequences of those treatments can be terrible,” he says.

“The kids can be left with learning difficulties and hearing difficulties, all sorts of problems that seriously affect their quality of life. That’s a really big challenge we’re trying to face.”

BREACHING THE BARRIER

With the help of funding from The Kids’ Cancer Project, Joshua is conducting research in the field of nanotechnology to develop a ‘Trojan horse’ that is capable of carrying targeted drugs across the blood-brain barrier.

We can design these nanoparticles in such a way as to 34 INSPIRE 016 | 2020

optimise them getting into the brain, and even deliver drugs that can selectively penetrate the tumour cells to deliver more targeted drugs directly to the tumour,” he says.

“The nanoparticles can be used to package a number of drugs, and one particular drug we’re testing is a relatively new class. One of the benefits of this type of drug is that it has high selectivity for its target gene.”

In other words, the nanoparticle can ensure the drug’s entry into the brain, then the drug will actively hunt down the tumour, or the genes that play a role in the tumour’s aggressiveness, which might slow down or stop the tumour’s growth.

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THE SCIENTIST’S CANCER JOURNEY

Joshua was just 12 when he was diagnosed with Hodgkin lymphoma, a blood cancer.

I usually tell people that the day you’re diagnosed with cancer is the day that particular person, the person they were before the diagnosis, dies,” he says.

“But it’s not necessarily a bad thing. A new person is born as they go through the treatment. So from the age of 12, I became a different person. Cancer became a part of my life and today I’m trying to give back to others who share that with me.”

“I’m very passionate about the toxic side effects and the long-term toxicity from the treatments. And I understand this topic because I had to suffer some of them as well.

With brain cancers, which are some of the nastiest cancers, long-term toxicity is a really big problem. So I think any sort of treatment we can develop that can minimises that toxicity has to be a very good thing.”

On the lighter side, being a practitioner and supporter of childhood cancer research also has its fun moments, such as Pirate Day, for which Joshua has agreed to dress up to help raise funds.

Pirate Day is a national fundraising day encouraging all Australians to dress like a pirate and raise money for childhood brain cancer research. While the official date for this year’s Pirate Day is 22 May, people can host the event any time of year.

“I’m thinking I will definitely have to wear a pirate’s hat,” he smiles, before agreeing that he might also be convinced to consider an eyepatch, a sword and a wooden leg.

A clinical trial, Joshua says, could be five to ten years away.

The funding from The Kids’ Cancer Project, Joshua explains, is very special for a number of reasons. “First, it makes the research possible. Second, the value of the funding is doubled by the Federal Government’s Collaborative Cancer Research Scheme, which matched the funding from The Kids’ Cancer Project dollar for dollar.

And finally, it helps me to continue to improve the future for children who have been blindsided by cancer, just as I was.”

COVID-19 hasn’t pressed pause on childhood cancer. In many ways it has made the situation for children and families affected more precarious.

Please help The Kids’ Cancer Project. We continue to rely on the community to keep up the momentum of scientific discovery by making donations to thekidscancerproject.org.au

Author: Chris Sheedy for The Kids Cancer Project - an independent national charity whose vision is to to support bold science that has the greatest chance of clinical success to improve childhood cancer treatments.

2020 | INSPIRE 016 35

HOW THE FAMILY PET IS REDUCING SOCIAL-EMOTIONAL PROBLEMS FOR KIDS

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We’ve always believed that the CHRISTOPHE KEREBEL family pet can have a positive impact on our health and now CHRISTOPHE KEREBEL My Twitter : @chriskere CHRISTOPHE KEREBEL To date, most research on the benefits of human–animal Telethon Kids researcher, interaction for children has focused on children with health conditions and disorders such as autism spectrum disorder, Associate Professor Hayley attention deficit hyperactivity disorder, and allergies and Christian, has been able to asthma. There is a paucity of evidence around the role of pets as companion animals rather than as service or emotional prove just how beneficial support animals in normal child social development. they are for our kids’ social Professor Christian’s research has highlighted the need for higher quality studies that use longitudinal data. and emotional development.

“Most studies to date are limited by methodological issues The findings lead the way such as small and nonrepresentative samples, a lack of adjustment for confounders, and weak study designs,” for new recommendations she said. around pet ownership to be “The beauty of this research is that it is easy to roll this out considered when assessing on a national scale. It simply requires the inclusion of pet ownership questions in national surveys. child development and school Targeted funding to conduct the readiness. research and evaluation is also

I

n new research published this year in the Journal of Pediatrics, Professor Christian and her team found that children with pets had up to 30% fewer socialemotional problems than children with no pets. It also found children without siblings benefit most in terms of their pro-social behaviour; developing their skills around sharing, helping and cooperating behaviours.

Professor Christian explains there is a number of mechanisms through which pets may facilitate a child’s development.

“Pets, in particular dogs, facilitate increased physical activity and active play in children, which has a number of mental health benefits,” she said.

“Pets may also provide a ‘social buffer’ for their owners in situations of increased stress or anxiety.

“The presence of pets in the household may teach children valuable life lessons, such as empathy toward others, the inevitability of death, and responsibility for other living things. These types of daily life lessons contribute toward children’s development and enables them to participate in social and civic life.”

The study used data from children aged 5 and 7 years whose family completed a strengths and difficulties questionnaire to measure the child’s social-emotional development. Pet ownership status, the type of pet owned, as well as sociodemographic factors were also assessed in the research.

Professor Christian believes that early school age is an important period for getting a family pet.

The time when children start formal full-time school is a key period where families get a pet. By the age of seven, three quarters of Australian children have a pet and we believe this age is important in their social and emotional development.”

required to provide the best programs and policies that enable people to receive the many health and other benefits from having pets in our lives.”

Professor Christian is calling for pet ownership to be considered when assessing child development and school readiness.

“By regularly including questions around pet ownership in national surveys such as the Australian Early Development Census and National Health Survey, we will have the evidence required to better support child health and development planning and programs,” she said.

Professor Christian and her team hope to continue to provide high quality evidence to showcase the benefits of pets for children’s health and development across the life course.

“Our next body of research is looking to see if dogfacilitated play and physical activity increases the amount of time children spend interacting and bonding with their dog which we think may be important for facilitating other health and developmental benefits including self-esteem, self-regulation, empathy, autonomy, reduced stress levels and higher physical activity levels,” she said.

“We are also looking at the role pets can play to help children as we come out of the COVID-19 pandemic.”

Author: Associate Professor Hayley Christian is Head of Child Physical Activity, Health & Development at Telethon Kids Institute and a researcher with the University of Western Australia’s School of Population and Global Health.

2020 | INSPIRE 016 37

BUILDING BRIDGES BETWEEN ABORIGINAL YOUNG PEOPLE AND MENTAL HEALTH SERVICES Trust, Aboriginal ways of working and relationships are key

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CHRISTOPHE KEREBEL

CHRISTOPHE KEREBEL

My Twitter : @chriskere CHRISTOPHE KEREBEL

M

ost research paper s and news ar ticles about the mental health of Aboriginal young people begin with statistics highlighting the high rates of suicide, self-harm and mental distress.

Whilst these alarming statistics speak to the critical importance of systemic change, they are deficit focused and distract from the strengths and resilience of Aboriginal young people and their families. Most importantly, the emphasis on statistics displaces Aboriginals, relational ways of working, and diverts focus from understanding that Aboriginal people hold the solutions to improving their social and emotional wellbeing.

In response to these challenges, an Aboriginal-led, threeyear research project brought Aboriginal young people, community Elders and senior mental health service leaders together to build relationships and ask: how can youth mental health services better meet the needs of Aboriginal youth?

Through the participatory action research project, Building Bridges, a new way of working with youth mental health services was developed with the Nyoongar community in Perth, Western Australia, on Wadjuk boodja (country).

This way of working is starkly different from mainstream approaches as it draws on the strengths, knowledge, innovation, and lived experience of Aboriginal young people and the cultural leadership and wisdom of their Elders. It places Aboriginal voices at the centre of change, and encourages non-Aboriginal service providers to slow down, listen and learn.

Aboriginal young people are emerging leaders and every opportunity should be made for their voices to be heard, particularly by mental health service providers who aim to improve their wellbeing. A key finding from the research was service leaders’ commitment to building trusting relationships with Aboriginal young people, their families, Elders and communities to deepen their knowledge of culture and spirit to co-design new culturally responsive service models.

As a young person, we don’t relate to a service logo, we relate to people.” (Aboriginal young person).

Cultural immersion activities conducted as part of Building Bridges were transformative for non-Aboriginal service staff who were encouraged to reflect on their own worldview and life stories, and deepen their understanding of Aboriginal ways of being, knowing and doing.

Through going On Country, storying and yarning together, Elders were able to help ser vice staff understand Australian history from an Aboriginal perspective, and the ongoing impact of colonisation. Understanding this 2020 | INSPIRE 016 39

Aboriginal Elder coresearchers Aunty Helen and Uncle Charlie Kickett 40â&#x20AC;&#x192; INSPIRE 016 | 2020

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Aboriginal youth co-researchers Hunter Culbong, Maeisha Ramirez-Watkins, Aggie Manel and Ashton Ramirez-Watkins

history is key to recognising why building trust is essential to improving Aboriginal young people’s engagement with services. Importantly, building trust takes time, and requires non-Aboriginal people to build more personal, reciprocal and authentic relationships with Aboriginal young people, their families and communities.

“It’s always been a black and white situation, there is no trust in mental health services across the board because of past history and the intergenerational trauma that’s been handed down to the young ones who’ve learnt not to trust organisations and therefore don’t go to them for help” (Aboriginal Elder).

For Aboriginal young people, culture is a source of identity, resilience, happiness and confidence that goes hand in hand with wellbeing. As a result, mental health service staff needed to rectify their lack of knowledge and deepen their understanding of culture and spirituality.

“I love talking about our culture and where we come from and all that sort of stuff, that’s my favourite thing to do, but sometimes you don’t want to have to explain to someone, sometimes you just want them to know” (Aboriginal young person).

Strategies to improve the mental health of Aboriginal young people must, therefore, be informed by an Aboriginal worldview and grounded in Aboriginal culture.

“Our culture is always with us, we sleep with it, we walk with it, our culture is with us every step of the way” (Aboriginal Elder).

As part of the research, recommendations were developed for the mental health sector. These focus on building trusting relationships between local Aboriginal young people and Elders to co-design youth mental service provision. Building Bridges demonstrates that solutions to improving the social and emotional wellbeing of Aboriginal young people lie with Aboriginal communities. The findings are now being applied across WA in a large project (Our Journey, Our Story: Building bridges to improve the mental health and wellbeing of Aboriginal young people), which runs until mid-2024.

Building Bridges was funded by Healthway and led by Aboriginal researcher Michael Wright. Learn more at www. buildingbridgesproject.info Authors: Chief Investigators: Associate Professor Michael Wright1 Mr Glenn Pearson2 Associate Professor Ashleigh Lin2. Research team: Tiana Culbong1 Nikayla Crisp1 Affiliations: 1: Curtin University 2: Telethon Kids Institute

2020 | INSPIRE 016 41

GENE THERAPIES – SUCCESS IN TREATMENT OF SMA BRINGS HOPE FOR CHILDREN WITH RARE DISEASES After 25 years of incremental development, the possibility of treating genetic disease by repair or replacement of faulty genes is finally becoming a reality. A stunning example of the power of this approach, known as gene therapy, is the successful treatment of infants with Spinal Muscular Atrophy (SMA).

U

ntreated SMA is the leading genetic cause of infant death in Australia. The condition is caused by mutations in the SMN1 gene, resulting in deficiency of a protein critical for the survival of motor neurons in the brain and spinal cord.

This in turn leads to the die-off of motor neurons, relentlessly progressive muscle weakness, cardiorespiratory failure and death.

Until recently there were no effective treatments, but this has changed in the last two years, initially with the development of Nusinersen, a synthetic oligonucleotide 42 INSPIRE 016 | 2020

approach designed to increase production of the SMN protein from the SMN2 gene and, soon after, the development of a gene therapy approach by Avexis, a US-based biotechnology company. This involves the use of a genetically engineered virus (or vector) to deliver healthy copies of the SMN1 gene to motor neurons in the central nervous system after injection into a peripheral vein. Although effective, Nusinersen requires repeated treatments, while gene therapy offers the prospect of lifelong benefit after a single treatment.

In 2018, the gene therapy approach had yet to be trialled in newborn infants with SMA before onset of the earliest evidence of motor neuron death and muscle weakness.

Setting up such a trial required the participation of centres with rare combinations of clinical, gene therapy and newborn screening expertise.

This combination existed within Sydney Children’s Hospital’s Network (SCHN) and funding support for a pilot SMA Newborn Screening (NBS) program was offered by the NSW Department of Health, enabling SCHN to become a leading centre in an international trial (SPR1NT) specifically focused on the effectiveness of gene therapy in pre-symptomatic infants with SMA. The NBS pilot program commenced in August 2018, with the purpose of screening newborn babies for SMA to enable early diagnosis, access to care and support, and provision of the best available treatment for each affected newborn and family in New South Wales and the Australian Capital Territory. The research, supported

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by Luminesce Alliance, a collaboration between SCHN, Children’s Medical Research Institute (CMRI), University of New South Wales and University of Sydney, has since screened over 170,000 babies with one in every 10,000 being diagnosed with SMA. Excitingly, interim results show that infants treated by gene therapy soon after birth, before the onset of symptoms, are achieving age-appropriate motor milestones. This is an unprecedented result in the history of modern medicine with far-reaching implications for the treatment of many other genetic diseases affecting infants and children.

“It’s all about early detection and early treatment. The NBS program allows us to effectively identify the condition before the child develops symptoms, resulting in access to early treatment and a better outcome.” – A/Prof Veronica Wiley, Research Lead NSW/ACT NBS Program “We have shifted in a few short years from just thinking in terms of survivability to the realm of improving function and reducing the associated burden of disease” – A/Prof Michelle Farrar, Clinical Research Lead Neurology SCHN

This study shows that effective and safe gene therapies have the potential to dramatically transform life threatening diseases and heralds a new era in healthcare” – Prof Ian Alexander, Head Gene Therapy Research Unit SCHN & CMRI

Success in the treatment of SMA has served to heighten awareness of the growing impact of gene therapy and the readiness of the Australian healthcare and biomedical research sectors to meet the challenge of making a burgeoning number of similarly ground-breaking therapies available to Australian patients at the earliest opportunity.

One critical challenge is the manufacture of gene transfer vectors, similar to that used for SMA, with current global demand dramatically exceeding supply.

The NSW Department of Health has recognised this challenge, and the world-leading expertise in vector development within SCHN and CMRI, by providing $25 million in funding towards the establishment of a nationally significant advanced manufacturing capability. The GMP facilities under development will manufacture specialised gene therapy tools (vectors) at the scale and quality needed for clinical trials in both paediatric and adult patients across Australia.

“This new capability will have a transformative effect on the Australian gene therapy sector, shortening the timeline from bench to beside research, with profound impact on families affected by rare genetic diseases” – Dr Leszek Lisowski, Head Translational Vectorology Unit CMRI

Authors: Prof Ian Alexander, A/Prof Michelle Farrar & A/Prof Veronica Wiley - Kids Research, Sydney Children’s Hospitals Network (SCHN)

2020 | INSPIRE 016 43

WRAPPING THE FAMILY AROUND CONGENITAL HEART HEALTH RESEARCH AND PRACTICE The reduction in morbidity and mortality for children with serious congenital heart conditions means that many children undergoing complex treatments, such as the Fontan procedure for those born with a single ventricle, will survive into adulthood.

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O

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n the journey to adulthood, however, significant numbers of these children will experience neurodevelopmental, psychological and emotional issues. These include deficits in visualperceptive skills and executive functions and in fine and gross motor skills; and behavioural issues such as attention deficit disorder, with a resultant reduction in quality of life1. Children, young people, and adults with congenital heart disease (CHD) experience higher rates of anxiety and depression than their nonCHD contemporaries with estimates of up to one-third of CHD surgical patients experiencing post-traumatic stress disorder (PTSD)2.

Interestingly, the same rate of PTSD has been identified in parents of infants undergoing cardiac surgery in the first 3 months of life in research undertaken at the Royal Children’s Hospital (RCH)3 .

Reviews of the impact of congenital heart disease (CHD) on parents and families and the way they cope, have highlighted a range of other mental health impacts in these parents, such as anxiety, depression, and in the case of up to 80% of parents, a broader distress caused by fear of their child’s death and uncertainty around both the quality and quantity of their child’s life 4, 3 .

For these reasons there are increasing calls for the immediate better integration of psychosocial support services within paediatric cardiology services 3-4 at the same time as advancing the necessary research into areas such as the genetics of CHD, optimal surgical and medical treatment, and paediatric cardiac rehabilitation, among others.

2020 | INSPIRE 016 45

One very important reason for addressing parental mental health and coping is the clear evidence that compromised parental mental health, if untreated, can adversely affect a parent’s ability to care for his or her child and can lead to long-term cognitive, healthrelated, and behavioural problems in children3 .

As well as treating parents’ psychological and adjustment issues directly, gains can be made in family and parental functioning through enhancing, coping and building resilience. This is what the Australia Centre for Heart Health (ACHH) did with 46 INSPIRE 016 | 2020

its Family Resilience Program, a co-production with HeartKids Australia (HKA).

The program complements some good examples of integrative health and mental health practice found in the CHD clinical psychology program at the Heart Centre for Children in Sydney, the Queensland Paediatric Cardiac Service, and RCH’s Circle of Care Optimising Outcomes for Newborns (COCOON) model, which incorporate developmental care and infant and parent mental health.

CHRISTOPHE KEREBEL

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My Twitter : @chriskere CHRISTOPHE KEREBEL

THE CHD FAMILY RESILIENCE PROGRAM

This collaborative research and translational project brought together the Melbourne Graduate School of Education’s research on child and adolescent coping and parenting style, the ACHH Director’s research on the familial impact and management of complex paediatric oncology cases, and the expertise of HeartKids Australia in CHD-related parental support.

Two systematic literature reviews were undertaken, examining familial impact and coping with CHD 4 and parent education and support programs for children with special health care needs 5.

Interviews with parents of children with CHD connected to HKA’s Family Support Program were then undertaken, using an interview schedule developed collaboratively between the HeartKids Family Support Workers, all of whom were parents of children with heart conditions themselves. The interview content was informed by the systematic reviews and the lived experience of the HeartKids staff.ˮ The co-design of the interview schedule ensured that the domains covered, such as disease management, management of transitions (e.g. hospital to home, home to school) and social support were relevant, and that the language used in the questions was consistent with the language normally used by the parents 6 . Language is important in the way people frame their perception and responses to their circumstances: congenital heart health, rather than congenital heart disease; heart difference, rather than heart defect.

1. Marino BS, Lipkin PH, Newburger JW, et al. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation 2012; 126: 1143-1172. 2012/08/02. DOI: 10.1161/CIR.0b013e318265ee8a.

2. Meentken MG, van Beynum IM, Legerstee JS, et al. Medically Related Post-traumatic Stress in Children and Adolescents with Congenital Heart Defects. Frontiers in pediatrics 2017; 5: 20.

2017/03/01. DOI: 10.3389/fped.2017.00020.

3. Woolf-King SE, Anger A, Arnold EA, et al. Mental Health Among Parents of Children With Critical Congenital Heart Defects: A Systematic Review. J Am Heart Assoc 2017; 6: e004862

Following thematic analysis of the interviews, the intervention was developed, with the co-production of a Manualised program, followed by training of the HeartKids Family Support Workers as co-facilitators of the group program by the MGSE team, and finally, delivery of the program as a pilot.

When piloted, the program attracted mainly parents of children with major conditions, who were experiencing higher levels of stress than previously shown in samples of parents of children with a range of other illnesses. There were significant increases in parents’ self-efficacy both immediately and six months after program participation with the parents increasing their coping capacity over time as they put into practice new skills acquired through the program, and a growing use of productive coping strategies associated with increased resilience.

Future development of the program could include offering the original face-to-face version as a ‘virtual’ group using Zoom and the development of an online self-managed version which would be an ideal way of extended program reach for families who are unable to use scheduled sessions, whether face-to-face or ‘virtual’. This may provide a cost-effective alternative as we know that online technologies can provide similar and, in some cases, superior improvements to health and well-being outcomes.

Authors: Professor Alun C Jackson is Director, Australian Centre for Heart Health and an Honorary Professor in the Faculty of Health at Deakin University. Dr Barbara Murphy is Principal Researcher, Australian Centre for Heart Health, and an Honorary Associate Professor in the Faculty of Health at Deakin University.

2017/02/06. DOI: 10.1161/JAHA.116.004862.

4. Commonwealth of Australia. National Strategic Action Plan for Childhood Heart Disease-Beyond the Heart: Transforming Care.

Canberra: Department of Health, 2019.

5. Jackson AC, Liang RP, Frydenberg E, et al. Parent education programmes for special health care needs children: a systematic review. J Clin Nurs 2016; 25: 1528-1547. 2016/04/16. DOI: 10.1111/ jocn.13178.

6. Jackson AC, Higgins RO, Frydenberg E, et al. Parent’s Perspectives on How They Cope With the Impact on Their Family of a Child With Heart Disease. Journal of Pediatric Nursing 2018; 40: e9-e17. DOI: 10.1016/j.pedn.2018.01.020.

2020 | INSPIRE 016 47

NEW CRE IN YOUTH SUICIDE PREVENTION

LAYING THE FOUNDATIONS FOR A NEW TRAJECTORY IN PUBLIC MENTAL HEALTH.

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n response to the coronavirus pandemic, the past few months have seen infectious disease epidemiologists working closely with biologists, immunologists, and behavioral and systems scientists to rapidly deploy systems models based on existing (albeit imperfect) data and expert knowledge. There have been unprecedented levels of cross-jurisdictional cooperation in facilitating the exchange of data and critical information needed to improve these models and improve our national capability to rapidly and effectively respond to this crisis.

With serious investments and engagement in the use of systems modelling to inform the national strategy, and efforts to transparently explain insights from scenario testing that underpinned decisions regarding mitigation measures, the role and value of systems modelling has been thrust into the consciousness of researchers, decision makers and the general public to an extent never achieved before.

Now a new threat is emerging. Most countries and international agencies have begun to recognise the unprecedented magnitude of the adverse impact 48â&#x20AC;&#x192; INSPIRE 016 | 2020

COVID-19 will have on population-based mental health outcomes, mental health services, and suicide risk â&#x20AC;&#x201C; with young people and more disadvantaged communities experiencing particularly severe effects.

The mental health impacts in this country will depend on the extent and duration of recession, high unemployment and underemployment rates, and social dislocation (arising from non-participation in education and work, family breakdown, evictions, etc.), as well as our ability to effectively respond.

Some governments, particularly in high income countries, are already instituting measures to reduce economic and social hardship by making large but likely temporary investments in employment and welfare funding, continuity of education and training, housing stability, family support, and improved access to virtual mental health services and resources.

However, it is unclear whether these responses will be sufficient or sustained for a long enough period to ameliorate the anticipated increases in psychological distress and mental health issues in the post-COVID-19 era.

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Much can be learned from interdisciplinary complex systems modelling methods deployed by infectious disease epidemiologists, and their harnessing of data assimilation that combines theory with empirical observations in a continuous knowledge feedback process.

This facilitates more rapid hypothesis development, testing, and refinement in the service of both scientific advancement and more effective decision making.

Engagement with complex systems modelling methods, particularly in public mental health research, will provide greater agility, enabling us to be responsive to a rapidly changing world and emerging threats.

A/Professor Jo-An Atkinson

As the national urgency of suicide prevention becomes a central focus for Australia’s health system in the postCOVID-19 era, the University of Sydney’s Brain and Mind Centre has launched YOUTHe, a five-year Centre of Research Excellence (CRE) in suicide prevention for young people.

T he $2.5 million, f i ve -ye ar National He alth and Medical Research Commission (NHMRC) program is a collaboration between some of Australia’s top multidisciplinary mental health researchers, organisations such as Orygen Youth Health and the Australasian College of Emergency Medicine, and youth advocates.

The focus of the CRE is healthcare system reform through the integration of traditional research methods, complex systems modelling, technologies for intervention and continuous outcome monitoring, data science, and participatory design.

In contrast to the field of infectious disease epidemiology, complex systems modelling has not pervaded mental health research, nor does it underpin advice given to governments. Instead, an epistemological entrenchment binds us to static, linear thinking and assumptions of the independence of risk factors, with little formal (or statistical) recognition of the interrelationships and dynamics between them.

This entrenchment also promotes competitive silos in mental health, with intense lobbying of government and other funders for investment in particular solutions or reductions in particular risk factors of interest, and few examples of efforts to bring the pieces of the puzzle together in ways that can answer the challenging questions decision makers face, namely;

what combination of initiatives are required, at what time, in what sequence, targeted at whom, with what intensity, and for how long, to deliver the greatest impacts for the populations we serve?ˮ

Building on the track record of innovation among investigators, this program of research will lay the foundations for the critical data and decision support infrastructure needed in mental health, and will provide a blueprint for working collaboratively with governments and regional planners to support effective action.

We are at a critical juncture for mental health and suicide prevention. It remains to be seen if the research community will continue business as usual, or take the opportunity to harness the same disciplined complex systems modelling approach that has underpinned the successful response to the coronavirus threat in Australia, and put the field of public mental health on a new trajectory.

Authors: A/Professor Jo-An Atkinson, Head, Systems Modelling and Simulation & Professor Ian Hickie AM, Co-Director, Health and Policy, The University of Sydney Central Clinical School, both from The Brain & Mind Centre.

The University of Sydney

2020 | INSPIRE 016 49

THE LAST WORD

“Children are not just little adults…”

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t is a refrain that we paediatricians learned during our training and have all used regularly throughout our careers. Whether consulting with other clinicians, advising parents or advocating with decision makers, we constantly highlight the many things about children and young people that require special consideration.

And it is not just about their biological or sociological maturity, the fact that they are physically changing faster than at any other life stage, or because they require nurturing and protection until they have the capacity to control their destinies to the extent that adults do.

It is because we know that the keys to controlling many of the ills that beset us today as adults, indeed as a society, lie in what happens in our early years of life.

And this is why child health research matters.

Mental health is an excellent example. We all hear of the tragedy of youth suicide, but beyond that our attention to mental illness concentrates on the enormous burden in adulthood. Yet 50% of mental disorders have already begun before the age of 15 years, and 75% by age 25.

If prevention is better than cure, our research agenda must focus more on children and young people.

is why immunising children against pneumococcus is a great way of protecting the elderly. So why is SARSCoV-2 behaving so differently? This should be a key focus but instead, the focus of most COVID-19 research has been on how to treat or prevent severe disease in adults.

Everyone’s psychosocial wellbeing has also been damaged by the pandemic to an extent, and our coping mechanisms are challenged in ways that we really don’t understand.

If adults are having difficulty managing the constant barrage of information and misinformation and the uncertainties of our health and economic futures, how are our children and young people coping, and what long term impacts will we see? Research is key to supporting children and families through this pandemic and to prepare us for future crises.

COVID-19 exemplifies why child and young people’s health research stands apart. Our research priorities should not be dictated largely by when in the life course the burden of illness occurs. Other factors are equally The current coronavirus pandemic is another perfect example. Superficially, it would seem that COVID-19 is important, such as when in the life not really a child health and wellbeing issue. Not only are course the impact will be greatest.ˮ children getting infected less, and getting seriously ill less, they also appear to transmit the virus less than adults.

So dramatic are these differences that (despite the vocal debates) schools have been able to remain open, or re-open, with little apparent risk to the community.

But if you look closer, there are intriguing subtexts. We are used to children getting respiratory infections more than adults and getting them severely (just look around children’s hospital wards and emergency department wards in winter).

And aren’t children classic “super-spreaders”? We know this is the case for influenza and pneumococcus, which 50 INSPIRE 016 | 2020

In recent years, we have come to understand how the trajectory we navigate at the start of our lives influences what happens for years to come. When the early years don’t go well, the impact can last a lifetime. Insults such as alcohol exposure in utero, emotional deprivation in infancy, or poor nutrition and sedentary lifestyle in early childhood can set a pattern for later poor cognitive development, mental illness and chronic disease.

As we face the burgeoning epidemics of complex comorbidities, we must fight the temptation to put all our resources where the endpoints occur, where the later deaths and suffering appear. Most deaths in Australia

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occur in the older years, from cardiovascular disease, cancer, diabetes, and so on. Of course, it is essential to provide treatment for these chronic diseases.

But if we are to tackle these issues seriously, if we are to step back from the precipice of exponentially increasing health expenditure for minimal societal gain, we need to focus on prevention. If we want the “best buys” in health and wellbeing for the whole community for decades to come, we should move the lens to our children.

And we need a system that moves with us. For private companies, there is often little incentive to invest in medications for children, when the adult market is much larger. This means it can be years or decades after lifesaving medications are licensed for use in adults until they are available for children.

We need to convince industry of the value of this investment, including the social return that comes from investing in medications for children. For now, publicly funded research organisations like my own are taking on this challenge; trying

to short-circuit a system that leaves children unable to access life-saving treatments for many years.

More than thirty years ago, I made a conscious decision to become a paediatrician, for many reasons. There is a joy that comes from working closely with children and families; from helping children to recover from illness and preventing them getting sick in the first place, and in knowing that, by securing the future of a child, I am contributing to all of our futures.

I then moved into child health research leadership, to increase the impact I could have. The COVID-19 pandemic has brought home to all Australians why we need a thriving medical research sector, to help us discover new treatments and preventions. I hope it will also remind us that our future requires us to provide healthy upbringings for children and ensure that research into the health and wellbeing of children and young people remains a priority.

Author: Professor Jonathan Carapetis, Director Telethon Kids Institute

2020 | INSPIRE 016 51

Technological innovation is an important enabler of health care improvements and the Bupa Health Foundation is proud to sponsor the Research Australia Data Innovation Award.

T

he Bupa Health Foundation partners with health and medical researchers to address the health needs of the Australian community.

We’ve built a strong legacy over the last 15 years, by investing in research that supports individuals to make better choices for their health, and partnering with leading organisations to drive policy reform and support advocacy.

One of the strategic themes that guides the Foundation’s work is “data and digital technology” – looking at how best to utilise data sources and digital technologies to improve health outcomes through improved access, consumer engagement and system efficiency.

Some of our work in this area includes the $1million recently awarded to two projects focused on improving mental health models of care in Australia. One project will measure the tangible benefits technology provides in empowering young people to access the best care; while the other aims to use data and consumer feedback to evaluate and improve mental health care delivery.

Associate Professor Annette Schmiede presenting the 2019 Data Innovation Award to Professor Andrew Zannettino accepting on behalf of Professor John Lynch, University of Adelaide.

We’re also supporting ground-breaking research that is tapping into the power of linked data to enhance cancer care and improve patient outcomes, and are an active partner in the Digital Health CRC.