By Dr Antoinette Anazodo and A/Prof Pandora Patterson.
Youth cancer charity CanTeen held the inaugural International Adolescent and Young Adult Oncology Congress in Sydney from 3-5 December.
More than 250 delegates from the USA, Canada, Europe, New Zealand and across Australia attended this multi-disciplinary Congress, including oncologists, haematologists, nurses, psychosocial and allied health staff, policy makers and non-government organisation staff. The theme for the Congress was Crossing Boundaries and Bringing it all Together, emphasising the importance of bringing together a wide range of health professionals, including both paediatric and adult colleagues, to deliver a comprehensive, multidisciplinary model of care.
The Congress focused on three key themes of adolescent and young adult (AYA) cancer care – best practice and emerging medical treatments, psychological and emotional support as well as survivorship.
The Committee, comprising of experts from around Australia, New Zealand, the US and the UK, delivered a highly engaging program which included worldwide leaders in the field of AYA oncology and psychosocial support.
L-R CanTeen CEO Peter Orchard, Federal Health Minister Sussan Ley, Dr Antoinette Anazodo, Youth Advisory Group members Mark Haseloff and Keifer King
The International keynote speakers were:
- A/Professor Brad Zebrack, Associate Professor at University of Michigan School of Social Work
- A/Professor Brandon Hayes-Lattin, Associate Professor of Medicine at the Division of Haematology and Medical Oncology, Oregon Health and Science University
- Ms Sue Morgan, Teenage Cancer Trust Nurse Consultant
- Dr Dan Stark, Senior Lecturer and Honorary Consultant in Medical Oncology at Leeds University
- Dr Norma D’Agostino, Department of Psychiatry, University of Toronto
Additionally, 42 national and international invited speakers took part in the Congress.
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The Congress was formally opened by The Hon Jillian Skinner MP, NSW Minister for Health. As part of the opening session, 23 year-old cancer survivor Keifer King gave delegates an overview of the first Australian Youth Cancer Summit, also hosted by CanTeen, which had been held over the previous two days. More than 110 young patients, survivors, partners and family members attended this inspiring event, having the opportunity to connect with others in a similar situation, find information and get support.
The first plenary session provided an insight into AYA cancer around the world with presentations from A/Prof Brandon Hayes-Lattin (USA), CanTeen CEO Peter Orchard (Australia), Dr Dan Stark (Europe) as well as Kirsten Ballantine & Heidi Watson (New Zealand). All speakers emphasised the importance of recognising that AYAs are a unique cohort of cancer patients requiring specialised, developmentally appropriate care.
The second plenary session focused on the Australian model of care, which is highly regarded internationally for the way that psychosocial care – especially important for the AYA age group – is integrated alongside medical treatment. Delegates heard how the Youth Cancer Services (YCS), which are funded by CanTeen as well as Federal and State Governments, provide specialist, age-appropriate treatment and support to young cancer patients. Around 70% of newly diagnosed young cancer patients in Australia are now being treated through the YCS, and over 1,200 patients received treatment and support over the last financial year.
Day 2 of the Congress began with a plenary session on psychosocial assessment and care of AYA cancer patients. International keynote speaker A/Prof Brad Zebrack spoke of the importance of distress screening, highlighting that unmet psychosocial and supportive care needs can compromise a young patient’s survival and quality of life.
The Federal Minister for Health, Minister for Aged Care and Minister for Sport, The Hon Sussan Ley MP, then gave a Congress address, praising CanTeen and the Youth Cancer Services for their work in supporting young cancer patients, acknowledging their unique role within the oncology sector.
During a plenary session on young people and decision making, Professor Kate Steinbeck gave an engaging presentation on hormones and teenage behaviour where she highlighted that adolescent behaviour has been preserved throughout evolution (and that even teenage elephants get drunk!).
The social highlight of the Congress was the Conference Dinner Cruise on beautiful Sydney Harbour, which was of course especially impressive for the international delegates.
The third and final day of the Congress commenced with the important issue of survivorship. The UK based Teenage Cancer Trust’s Sue Morgan gave a fantastic presentation highlighting the many and varied social challenges facing young cancer survivors, including the common feeling that they have to live an outstanding and ‘perfect’ life because they’ve been ‘saved’. Professors Richard Cohn and Robert Carr highlighted the ongoing health challenges faced by many survivors such as being more likely to develop cardiovascular disease later in life due to the vascular damage that chemotherapy and radiotherapy can cause.
These ongoing emotional, social and health challenges are also echoed in a new report on survivorship that CanTeen released in line with the Congress. Recommendations from the report include better cooperation and referrals between hospitals, primary care and community services.
The Congress’ final session was an entertaining and engaging panel Q&A with leading international and Australian speakers, looking at issues such as international collaboration in the AYA oncology field and our role in supporting developing countries in improving cancer treatment and care for this age group.
Concurrent sessions throughout the Congress included presentations on oncofertility, palliative care, psychosocial support, nursing and many more. Fertility preservation is a crucial issue facing AYA cancer patients and is particularly challenging for them to have to consider in addition to the shock of a cancer diagnosis. The palliative care sessions were well attended and a young person spoke powerfully from a patient point of view about the benefits of palliative care and how it shouldn’t only be considered for end of life patients.
In the area of psychosocial support, CanTeen’s ground breaking work around delivering world leading online support for young people affected by cancer as well as the organisation’s individual support model, where young people’s distress levels are monitored at regular intervals, were presented.
Unique throughout the conference was the active participation of young cancer patients through co-chairing each session together with a health professional, in addition to presenting their stories and providing a personal perspective on each theme. Jasmine Gailer, a young cancer survivor and the founder of a charity called Scar Stories (link to http://www.scarstories.org/), presented on the issue of body image for young survivors and how she is helping young people cope with the physical changes that cancer causes.
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Looking ahead, an Adolescent and Young Adult Cancer Global Accord has been formed between CanTeen, the Teenage Cancer Trust and Teen Cancer America to establish a new conference series, the “Global AYA Congress”, providing an international educational forum for healthcare professionals and researchers in AYA oncology.
The Global AYA Congress is intended to be a powerful stimulus for looking for innovative and effective solutions in cancer care for AYAs. It will represent an annual opportunity for delegates and hosts to showcase their experiences and best practice to benefit the wider, global community. It will be held annually and hosted on a rotational basis each year by one of the three organisations, with the first to be hosted by the Teenage Cancer Trust and held in Edinburgh in December 2016. (link to https://www.teenagecancertrust.org/about-us/what-we-do/professional-leadership/international-conference)
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Dr Antoinette Anazodo
Dr Antoinette Anazodo is Chair of the Scientific Organising Committee and Lead Clinician of the NSW/ACT Youth Cancer Service.
A/Prof Pandora Patterson
A/Prof Pandora Patterson is Deputy Chair of the Scientific Organising Committee and General Manager of Research and Youth Cancer Services, CanTeen.
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