Download September 2014

YCS Matters
EDITION # 3 SEPTEMBER 2014
Welcome...
Welcome to the Spring edition of YCS Matters.
2014 is flying past and as a team working together across the jurisdictions and at national level we continue
to make exciting progress in key areas affecting the care and support of young cancer patients.
There have been some great developments at a national level including progressing the national AYA
research priorities project and dataset initiative, the appointment of the Phase 2 evaluators, planning
for the 2015 AYA Congress and Youth Cancer Summit, filming for the YCS Digital Care Pathway Project
and planning for a nursing academic mentorship program to commence in 2015. At an international
level, discussions have commenced with key AYA colleagues in the UK, US and Europe to establish an
international peak body to advocate for AYA cancer patients. We also welcomed Alexandra Crowley to the
national team. Alex commenced as Project Officer in August and provides much needed administrative and
project support to Janine and Hannah.
There have been changes in Lead Clinician appointments in QLD and WA. Melissa Jessop has left the
QLD team to take 12 months maternity leave. Po Inglis will commence as Lead Clinician, from September,
covering the strategic aspects of service implementation and the national collaboration agenda. Rick Walker
will cover Melissa’s clinical load across both Princess Alexandra and Royal Brisbane & Women’s Hospital.
WA has welcomed Rachel Hughes to the role of Lead Clinician. Rachel commenced in early August and
takes over from Marianne Phillips who has held the post in an acting capacity since July 2013.
We would like to take this opportunity to acknowledge and thank both Marianne and Melissa for their
contribution to the development of their respective services throughout 2013-2014.
Around the country, jurisdictional teams are in full swing finalising outstanding clinical appointments,
embedding their 2014-15 implementation plans into service planning and delivery, consulting to construction
teams on AYA spaces in two state comprehensive cancer centres and three new hospital developments,
recruiting to new and existing AYA-specific research studies and clinical trials and profiling their services at
local forums and state conferences.
The upcoming National Network
meeting in October will provide
a great opportunity for us all to
reconnect, engage, learn and
celebrate the achievements of
the YCS so far this year.
We look forward to seeing you
all in Brisbane next month.
The YCS National Team
Youth Cancer Service Connecting young people living with cancer to specialist care and support
YOUTH CANCER SERVICE UPDATE: SEPTEMBER 2014
Around the Country
Victoria/Tasmania – Update from Kate Thompson, Service Manager
This quarter has seen a strong focus on the
ongoing development and implementation of
the Victorian & Tasmanian state-wide education
strategy. This strategy is aimed at both promoting
and further developing health workforce capacity in
the delivery of evidence-based care and support for
young people experiencing cancer.
The Service commenced its study day series in
collaboration with attendance from a broad range
of professionals from across the healthcare sector.
The first study day provided an evidence-based
introduction to AYA oncology with lectures focusing
on cancer epidemiology & biology; adolescent health
& development, wellbeing and psychosocial care.
The second study, to be held shortly, will include
topics on fertility management, palliative care and
survivorship, as well as practice-oriented sessions
on integrating family and patient-centred approaches
to care and issues relating to ethics, professionalism
and self-care in working with young people.
ONTrac at Peter Mac continues to collaborate with
the Centre for Adolescent Health & the University
of Melbourne in education initiatives and has
funded the expansion of the free online learning
modules on AYA cancer care through qstream.
Members of the Victorian and Tasmanian Youth Cancer
Advisory Board at the launch of their promotional DVD
To date over 200 learners from across Australia
and internationally have enrolled since the modules
were launched in June 2013. For more information
or to enrol visit http://cah.qstream.com
Kate Thompson and Ilana Berger were recently
invited as guest speakers to the Leukaemia & Blood
Cancer New Zealand Winter Workshop Series.
This week long event saw lectures presented in
Auckland, Hamilton, Wellington and Christchurch
on the evolution and direction of the field of
Adolescent & Young Adult Oncology.
The Service had eight posters accepted at this
year’s Teenage Cancer Trust Conference in London
highlighting work being undertaken in the areas
of adolescent & young adult survivorship, genetic
counselling, palliative care, work force development
and clinical care. The conference provided an
opportunity for staff who attended to visit the TCT
Unit at University College London to gather ideas
for the detailed design of the new AYA space under
development as part of the Victoria Comprehensive
Cancer Centre project.
Finally, the Victorian and Tasmanian Youth Cancer
Advisory Board (YCAB) celebrated the launch
of their new promotional video in early June at
the Park Hyatt in Melbourne. The launch was
attended by key supporters of the Board and
their work, including family and friends as well as
senior representatives from the Department of
Health, Peter MacCallum Cancer Centre’s Board
of Directors and Executive, ONTrac at Peter Mac,
CanTeen and RedKite. The video will provide YCAB
with an additional platform for its important youth
cancer advocacy, education and training work. To
view the video and for more information about
YCAB, check out http://www.petermac.org/ontrac/
consumer_participation.htm
Youth Cancer Service Connecting young people living with cancer to specialist care and support
YOUTH CANCER SERVICE UPDATE: SEPTEMBER 2014
Around the Country
New South Wales/ACT – Update from Hera Dimitriadis, Service Manager
Hello to the YCS team across Australia. My name is
Hera Dimitriadis and I have recently been appointed
as the Service Manager NSW/ACT Youth Cancer
Service. I am a dentist by profession but have worked
extensively with the medically compromised patient
in several hospitals both in NSW and Qld. Much
of my work has involved working with head and
neck cancer patients but also with a variety of other
cancers. I have a Master in Health Management and
have held several management positions and am
excited to be taking up my new role to support staff
working with AYA cancer patients. I have met a few
members of the team already but look forward to
catching up with everyone at the National Network
Meeting next month.
The YCS team have been busy across NSW and
ACT over the last few months, including Jennifer
Chard who announced the arrival of an additional
member to our team, baby Jonathan. We want to
wish them both a happy life together and welcome
Jonathan into this world. We may get an opportunity
to meet Jonathan at the National Network
Conference.
The FUTuRE Fertility Team have submitted the
NEAF application which covers NSW, Victoria,
Queensland and South Australia and have completed
the additional HREC forms for NT, Western Australia,
ACT and Tasmania. We now have to start the
process of completing the ethics forms for the
private fertility centres. The registry is currently
being built and will be tested in late September.
The FUTuRE is Fertility website content has been
finished and awaiting finalisation of the coding
process but in the meantime we have started work
on the 30 patient resources that the consumer group
identified. Filming began this week with Bronwyn
our WA representative and really captures the reason
we are all committed to this project.
Our Education Liaison, Carolyn Armstrong, plays
a major advocacy role between our patients and
their schools, staff and the Education Department,
and has had some wins, including getting a patient
to be awarded her Higher School Certificate when
the school principal decided himself to take away
this opportunity from the student. We need more
‘Carolyns’ across all our states and territories to
support our AYA patients.
In the Hunter region, the theme of the team’s work
in addition to their general clinical work, has been
presenting at conferences. This started with two
presentations at the Adelaide National Network
Meeting days in May at both the Psychosocial
Clinical Stream by Karen Matthews, Clinical
Psychologist and Julia Drake Social Worker and at
the Care Co-ordinators Stream by Lyndal Moore,
Clinical Nurse Consultant.
Julia flew to Hong Kong with her Social Work
colleague Emma Sturgess in mid-June to attend
the 10th International Conference on Grief and
Bereavement. This opportunity was funded by
the Calvary Mater Newcastle and they presented
“Perceptions of Grief: Does Age Make a Difference?”
Lyndal together with Liz Hesketh attended both
the AYA day at the ANZCHOG Annual Scientific
Meeting in Sydney in June and the main conference.
Lyndal delivered an oral presentation on “A tailored
multidisciplinary team meeting the needs of
adolescent and young adult cancer patients living in
the Hunter and Northern NSW”.
Youth Cancer Service Connecting young people living with cancer to specialist care and support
YOUTH CANCER SERVICE UPDATE: SEPTEMBER 2014
Around the Country
Queensland – Roz Henney, Service Manager
The Queensland Youth Cancer Service’s (Q YCS)
partnership has steadily progressed over the past
6 months. All partners have signed a Service
Provider Agreement (SPA) with Children’s Health
Queensland (CHQ), formally agreeing to be a part
of the state-wide service. The Central Team is
now complete with the commencement of Jane
Roach as the State-wide Educator.
A major upcoming event for the Central Team will
be the move from RCH in Herston (Northside) to
the new Lady Cilento Children’s Hospital in South
Brisbane. The LCCH will see the integration of both
the Mater Children’s Hospital (MCH) and the RCH
into one centre. The LCCH will be the only Level 6
paediatric facility in the State. CHQ is recognised
for its role in the provision of many state-wide
services and will continue to expand this role with
the inclusion of the QYCS. The prospect of our
relocation is exciting, emotional and daunting.
Firstly the move to LCCH will see the physical
separation of the RCH and the RBWH who have
shared the same campus location in Herston since
1878 i.e. 136 years! A long history of tradition,
formal and informal partnerships and services will
be modified. An easy stroll from RCH across the
campus to the RBWH psychosocial MDTs will soon
be a taxi ride, videolink or Route 66 bus trip for the
Central Team. On the bright side, it was confirmed
last week that there will be space to house the
Central Team at LCCH – news well received. Even
better news was that there will be six allocated
YCS inpatient beds which will be progressively
implemented over the coming 18 months. The
other change will be an increase of the admitting
age from 15 to 18 years for oncology patients.
Townsville has confirmed that Corinne Ryan will
be the YCS Clinician contact for north Queensland.
Corinne has a keen interest in the development
of Adolescents and Young Adults (AYA) cancer
services and trained at the RBWH before taking
up a Consultant Oncologist position in Townsville.
The YCS Care Coordinator position has been
advertised and we are looking forward to the
successful incumbent being announced soon.
At the Gold Coast Anita Cox together with Suzanne
Allan has been making great progress with service
development and promotion in the south-east
corner. Anita reports that patient referrals are
quiet at the moment but since the last newsletter
Gold Coast has commenced AYA Psychosocial
MDT with assistance from the Central Team in
Brisbane who link in via teleconferencing. Anita has
also collaborated with the Queensland Paediatric
Haematology Oncology Network (QPHON) CCC
at the GCUH and attends the paediatric oncology
outreach clinics when an AYA patient is booked.
One room on the GCUH in-patient ward has
been allocated for use by AYAs with cancer and
discussions have begun about the room allocation
and how it should be decorated. The in-patient
areas have a large proportion of single rooms,
ideal for infection control but not so good for
patients to mix and interact with peers resulting in
some patients staying isolated all day. One 19 year
old recently admitted, “…I just want somewhere
to go to lounge around that isn’t my bed, I want a
really big couch to flop on.”
Currently, planning is underway for minor
adjustments to develop a youth friendly room
and the Hospital Foundation will assist with
furnishings. Current and past-patients and the
QYCS consumer advisory group will provide input
to guide the team once we have confirmed funds
are in place. The team is also looking into the use
of the social space to be extended for use by AYA
patients waiting for treatment in the day unit as
this will provide somewhere to hang out while
waiting for treatment.
Youth Cancer Service Connecting young people living with cancer to specialist care and support
YOUTH CANCER SERVICE UPDATE: SEPTEMBER 2014
Around the Country
Janine Deevy from the YCS at RBWH reports
they were successful in a grant application to the
RBWH Foundation receiving $2000, which has
been used to purchase a flat screen television
and media unit, a PS4 and a multitude of games.
The mobile media trolley can be utilised either
by inpatients or AYA out-patients to provide
entertainment and distraction whilst receiving
cancer treatment. The RBWH team is very excited
about this new purchase and being able to better
entertain young patients.
The other exciting news for the Royal is that a
student undertaking her Masters of Social Work
has been allocated to cancer services for training
to become a qualified Social Worker. Jill Measday
has commenced working with Claire Masula
providing support for our young patients.
The Queensland Youth Advisory Group has
been quietly achieving some exciting things. The
recruitment process for new members has just
commenced and the group is looking forward
to welcoming the new members onto the
committee at the September meeting. The group
has contributed to the QYCS health professional
clinical education plan; the Youth Advisory Group
training plan; and will be assisting with the
development of a youth room at the new Gold
Coast University Hospital. We also now have a
Queensland representative on the National Youth
Advisory Group – Jenna Moloney.
Kim Sutherland, AYA Social Worker at PA Hospital
reports that on the 31st July, two AYA patients
were kind enough to meet with representatives
from RedKite and the Flight Centre Foundation.
Maddie and Neil shared their stories and provided
invaluable feedback about the benefits of receiving
a RedKite bag at the beginning of their cancer
journey. The representatives were able to see and
hear first hand the impact of a cancer diagnosis on
our young people, and the unique challenges they
face. It was a humbling experience for all involved,
and a reminder of the wonderful job RedKite does
supporting patients aged 0-24yrs.
Kate Martin, Maureen Oakhill, Danielle Cotter and patients Maddy Smith & Neil Tobler
Youth Cancer Service Connecting young people living with cancer to specialist care and support
YOUTH CANCER SERVICE UPDATE: SEPTEMBER 2014
Around the Country
South Australia/Northern Territory – Allan Hayward Service Manager
We extend a huge and warm welcome to our new
Cancer Care Coordinator Melissa Jones (pictured
below right) in SA. Melissa has worked in cancer
nursing since 2009 with experience in Medical
Oncology, Radiation Oncology and Haematology.
Melissa has a passion for cancer nursing, having
achieved a Graduate Diploma in Nursing Science
(Oncology Nursing) and is currently working
towards her Masters in Clinical Nursing. Melissa’s
enthusiasm and energy is a welcome addition to the
SA/NT team.
Our Youth Advisory Group are currently working on
the development of end of treatment information
packs for patients. Additionally they have met
with support agencies, providing feedback and
suggestions about the support needs of AYA’s
with cancer. The Leukaemia Foundation’s Support
Services Coordinator, Leela Atkinson, Redkite’s
Education/Vocation Officer, Carole Theiley and
CanTeen SA/NT’s Member Liaison Officer, Natalie
Brown have all attended advisory group meetings for
these valuable discussions.
with myself and paediatric rural and remote cancer
nurse, Shandelle Hill from the Adelaide Women’s
and Children’s Hospital. Topics were presented by
staff from Adelaide and Darwin (both live and via
videoconferencing) and included presentations
from Darwin YCS SA/NT cancer care coordinator,
Katie Sykes.
The nutritional needs of AYA’s with cancer have also
been on the agenda at the CanTeen Adolescent and
Young Adult Cancer Research Symposium (held in
tandem with the ANZCHOG meeting in Sydney)
with a presentation by YCS SA/NT lead clinician
Michael Osborn. Two posters were also presented
on the topic reflecting the work of dietitian Natalie
VanderHaak and Michael Osborn. This work also
attracted some media attention with several articles
appearing in newspapers around the country. Natalie
was also the recipient of the best scientific poster
award for this work at the Teenage Cancer Trust
conference held in London in July.
The YCS SA/NT team has also been involved in the
planning workshops for the next SA Cancer Control
plan (2016-2020) through its representation on
the SA Cancer Services operational and strategic
working groups.
We have also conducted a number of education
sessions and presentations. The YCS National
Network Day was hosted in Adelaide in May
with attendees from YCS’s around the country,
(see separate article). We also recently held a
paediatric and AYA cancer education day to a
group of nurses and allied health staff at the Royal
Darwin Hospital. This was a collaborative effort
Youth Cancer Service Connecting young people living with cancer to specialist care and support
Melissa Jones,
Cancer Care
Coordinator, SA
YOUTH CANCER SERVICE UPDATE: SEPTEMBER 2014
Around the Country
Western Australia – Update from Meg Plaster, Service Manager
The WA YCS is pleased to welcome Rachel Hughes,
who commenced with us on 11th August in the role
of Lead Clinician. She joins us from Victoria, having
spent a year with the ONTrac@PeterMac team
undertaking an AYA palliative care fellowship. We’re
very excited about the diverse palliative care, youth
health and service development experience she’ll
bring to our service. We thank Marianne Phillips for
her assistance in temporarily filling the role since
October 2013. In July, Orietta Simons led a group
of young consumers in presenting at the Fairground
conference, hosted by the Youth Affairs Council
of WA. http://www.yacwa.org.au/fairground2014.
The presentation with Orietta and the panel of 4
was extremely well received in presenting their
experiences with cancer, covering 4 focus areas of
diagnosis, fertility preservation, educational impact &
financial impact.
out space have been refurbished and decked out
with great Sony equipment. The areas will provide
young people who are inpatients the opportunity to
be co-located with their peers and have a dedicated
recreational space to spend time with their family
and friends when they have to be on the ward. The
WA YCS has been consulting with the ward staff to
facilitate access to these areas and develop a youthfriendly approach to caring for young people when
on the ward.
The final touches are nearly complete with You
Can refurbishment works on 5 inpatient beds in Sir
Charles Gairdner Hospital’s oncology ward, which
will complement the You Can outpatient Centre.
The 4-bed room, one single room and a new break-
The newly refurbished inpatient facilities at SCGH are almost complete
Youth Cancer Service Connecting young people living with cancer to specialist care and support
YOUTH CANCER SERVICE UPDATE: SEPTEMBER 2014
National and International Conferences
ANZCHOG
The Youth Cancer Service and CanTeen sponsored an AYA study day at the recent scientific meeting of
the Australia and New Zealand Children’s Haematology and Oncology Group (ANZCHOG). 60 participants
attended from across the YCS’s and from a variety of paediatric oncology centres from Australia and New
Zealand. Two international speakers (sponsored by CanTeen) presented on the day: Lennie Sender MD from
UC Irvine Medical and Children’s Hospital Orange County and Lori Weiner from the National Cancer Institute
in New York. Both Lennie and Lori are highly regarded internationally for their work in the AYA population. The
workshop provided a great showcase for clinical research in AYA oncology in the AUS/NZ region and covered
the cancer trajectory from diagnosis to survivorship. All aspects of the multidisciplinary team approach to care
were represented: medical, nursing, psychosocial and rehabilitation.
An AYA Fertility and Sexual Health Workshop
was also held with presentations on current
practice, and research initiatives and showcased
the multidisciplinary approach to this area of AYA
oncology treatment and support.
The feedback from both the study day and
workshop was excellent and colleagues have asked
for more AYA focus in the future.
At the ANZCHOG ASM, Michael Osborn was
unanimously voted onto the ANZCHOG Steering
Group. Michael will be able to represent the needs
of AYA patients and clinicians on this group and
we look forward to hearing about ANZCHOG AYA
developments.
L-R Antoinette Anazodo, Lori Weiner, Lennie Sender and Peter
Orchard at the CanTeen AYA study day at ANZCHOG
TCT
Twelve members of the YCS (pictured below)
attended the Teenage Cancer Trust conference
and preceding Symposium in London from July
6-8. Fifteen YCS poster abstracts were accepted.
Presentations over the three days included
exciting developments across a range of topics
including survivorship, ambulatory care services,
care delivery and clinical break-throughs. Ursula
Sansom-Daly, psychologist from YCS NSW/ACT
presented on Recapture Life: Harnessing e-health
to promote Resilience in Survivorship.
A number of important stakeholder meetings
were held during the following days to discuss
data, evaluation, patient education, accreditation
and research. Simon Fuller from the TCT chaired a
meeting with UK, US and Australian delegates to
discuss international collaboration and advocacy on
strategic issues, with an agreement to establish
a structure and common goals to move this
agenda forward.
The Australian contingent at the TCT conference in London.
Youth Cancer Service Connecting young people living with cancer to specialist care and support
YOUTH CANCER SERVICE UPDATE: SEPTEMBER 2014
National and International Conferences
CNSA
The Cancer Nurses Society of Australia (CNSA) held
its Winter Congress in Melbourne, July 24-26. The
conference brought together over 500 delegates
from across Australia. Although CNSA has a broad
oncology nursing remit, two AYA presentations were
included in the program: one from Lyndal Moore
YCS CNC from Hunter on ‘developing an outreach
service for AYA patients in rural NSW’ and one from
CanTeen Research Evaluation Officer Elizabeth KellyDalgety on the evaluation of the TRUCE project for
friends of young people living with cancer.
National Network Meeting
Allan Hayward, Michael Osborn and the SA/NT
team hosted the National Networking Meeting
on May 8-9 at Mount Lofty House. The program
comprised of two forums; AYA Indigenous health
and sexual health. Local presenters from SA/NT
showcased current work focussing on research,
data and clinical trials. The complexities of working
with Indigenous youth was well evidenced by
presentations from Carloyn Selby – Aboriginal &
Torres Strait Island Cancer Care Coordinator at
Royal Adelaide Hospital and Katie Sykes – Cancer
Care Coordinator at Royal Darwin Hospital.
Holly Skene from Sexual Health Information and
Networking SA and Prof Jane Usher reinforced the
importance of effective engagement with AYA’s on
the issue of sexual health.
Mount Lofty also provided the perfect venue for an
early morning walk to take in the awesome views
of the Adelaide Hills.
YCS early risers braced themselves against icy winds and rain
to reach the Mount Lofty Peak before breakfast.
National Youth Advisory Group
The National Youth Advisory Group met in Sydney,
Aug 15 – 16. The group spent a full day on the
Friday working on the Cancer Care Pathway
DVD project, including filming some of their own
individual interviews.
Members of the National Youth Advisory Group discuss plans
for 2014-15
Saturday saw the group strategizing on key
initiatives and group focus for 2014-2015 and
participating in a leadership development forum.
Xenia Alexander (VIC) and Mark Haseloff (SA) – cochairs of the group will present on their activities
throughout 2013-14 and their plans for 2014-15
to the YCS Strategic Advisory Group meeting on
September 10.
Youth Cancer Service Connecting young people living with cancer to specialist care and support
YOUTH CANCER SERVICE UPDATE: SEPTEMBER 2014
National Projects
Activity Based Funding
CanTeen and the YCS team at ONTrac are working to undertake a 6 month prospective study of YCS activity
data, recording all patient interventions and non-patient interventions/episodes (indirect time) occurring in the
non-admitted setting. The study will commence early in 2015 using the comprehensive database at Peter
MacCallum Cancer Centre. Data will be entered by all YCS clinicians and it is envisaged that analysis of the
data will accurately capture the comprehensive nature of the multidisciplinary care/support model for AYA
oncology. The data will then be analysed by health economists at SyRis Consulting and a costed model of
care designed.
The combination of the costed model of care and psychosocial treatment outcomes data from the Youth
Friendly Cancer Care project will provide a powerful argument for continued advocacy for the YCS and
ongoing funding at both federal and state level.
YCS Nurses – Academic Mentor Program
Janine MacDonald, Pandora Patterson (CanTeen) and Prof Kate White from the University of Sydney have
commenced work on a professional development and leadership program for the YCS nurses. The need for
the program has been determined following a recent audit of YCS nurses across the country to ascertain
baseline academic qualifications within the group and interest in further academic study. Emphasis for the
program will be on nursing leadership and an academic mentoring program for those wishing to undertake
clinical research and publish/present their results. Consultation will be undertaken with cancer nursing
academics across the country to develop a program that best meets the needs of our nurses. It is envisaged
that the program is to raise the profile of AYA cancer nursing in Australia and arm our nurses with the skills
they require to initiate and undertake clinical research studies.
Scholarships
The 2015 YCS Scholarships Program opens on September 18. Applications are invited from clinicians working
within the YCS and affiliated services wishing to further their AYA studies to undertake either the Graduate
Certificate or Graduate Diploma in Adolescent Health and Welfare – Oncology Stream at the University of
Melbourne. A total of ten scholarships will be awarded to the value of $5000. Further information on the
program, including selection criteria will be available from September 18.
Phase 2 Evaluation
CanTeen convened an Evaluation Committee in April to tender an independent evaluator for YCS Phase 2,
with the Nous Group appointed in late June, following a rigorous process. Nous has extensive experience in
evaluation and management consulting in the health sector, winning BRW Client Choice Awards in 2012 and
2013. More information can be found at www.nousgroup.com.au
An Evaluation Commencement workshop was held on 1 August, with key YCS stakeholders to test the
program logic model and approach, and Rachael Hough from University College Hospital London has agreed
to work with Nous in providing an international perspective. This consultation process will inform the final
strategy in the Evaluation Plan, which will be presented to the YCS Strategic Advisory Group for endorsement
in mid September.
Youth Cancer Service Connecting young people living with cancer to specialist care and support
YOUTH CANCER SERVICE UPDATE: SEPTEMBER 2014
National Projects
AYA Research initiatives
The Research Priorities Report provides a snapshot of the current Australian context and research outcomes
for youth cancer and has now been completed, following a systematic literature review, 11 key informant
interviews and an online survey to young cancer patients and health professionals.
The outcomes from the Report were presented to the Youth Cancer Research Advisory Group at their May
meeting by Sharon Medlow and Pandora Patterson (CanTeen). Members were asked to advise CanTeen on
its research investment decisions for the funds currently available for Phase 2. A number of priorities were
identified including project seed funding, research translation work, survivorship, building workforce capacity
through a PhD scholarship, and updating the AIHW report on youth cancer data. Sourcing additional funding
was also discussed including identifying co-funding through collaborative projects and using underspends
from the YCS jurisdictions.
AYA national Dataset initiatives
The Youth Cancer Dataset Discussion paper, developed by the South Australian Health and Medical Research
Institute and Professor David Roder, was finalised and delivered to CanTeen in June, following extensive
consultation and discussion on the strategic directions over the past 6 months.
The purpose of this initiative will enable analysis and research that identifies the needs of young cancer
patients, their treatment patterns and outcomes. In particular, this dataset work will enable the; identification
of unmet patient needs, mapping of the patterns of care across centres and cancers, monitoring the emerging
patterns of complication and an assessment of patient outcomes.
The Dataset Advisory Group has accepted the directions and recommendations outlined in the Report at
their meeting in mid-June. To progress this initiative, a new Senior Data Manager is currently being recruited
to manage its implementation, with a new operational Steering Committee to be formed and targeted
engagement with key external stakeholders such as Cancer Australia, AIHW and the State Cancer Registries.
YCS Digital Care Pathway Project
CanTeen is working with Enlighter, a digital media company and the National Youth Advisory Group to create a
digital version of the YCS Cancer Care Pathway. The project will see young cancer patients and survivors from
across Australia sharing their personal experiences about cancer via an interview process. The interviews will
then be edited to form an extensive library that will cover all aspects that affect young people throughout their
cancer treatment & will include issues related to: physical, psychosocial, emotional and financial wellbeing,
education, fertility preservation, spirituality, side effects of treatment etc. YCS clinicians will also be interviewed
for the project which is due for completion early in 2015. The digital pathway will then be published online.
e-Learning Package for AYA Psychosocial Assessment Manual & Tools
CanTeen has engaged a team at the University of Sydney to create an e-learning package for the AYA
Psychosocial Assessment Manual and tools. The platform will be hosted on the YCS website and will be
free for YCS staff to access. The learning modules will be interactive with DVD introductions and practical
demonstrations of the tools in use by YCS clinicians and patients. A YCS clinical reference group has been
established with representation from nursing and psychosocial disciplines and consumers to ensure the
program meets the needs of all who use the tool. The program is scheduled to be rolled out in December.
International AYA Congress Dec 2015
Plans are well underway for the YCS International AYA conference to be held in December next year. Chilli
Fox Events has been appointed as the conference organiser and the date and venue secured – Hilton Hotel
Sydney Dec 3-5. The Scientific Committee has been convened with representation across the disciplines
from Australia and New Zealand and members from the US, UK and Canada are expected to join next month.
Antoinette Anazodo has been elected as Chair of the committee.
Youth Cancer Service Connecting young people living with cancer to specialist care and support
YOUTH CANCER SERVICE UPDATE: SEPTEMBER 2014
National Projects
Youth Cancer Summit
The Inaugural Youth Cancer Summit will precede the AYA Congress on Dec 1-2. A mix of formal and informal
education sessions, interactive workshops, discussion groups and exhibitions, the summit aims to provide
the opportunity for everyone involved in the young cancer patient’s journey to become empowered through
knowledge, information, networking and social interaction. An organising committee has been convened and
met for the first time on September 13. The committee is comprised of patients/survivors, parents, siblings
and partners with membership from WA, SA, TAS, VIC and NSW.
YCS Awareness campaign
CanTeen is planning to undertake the first of its annual awareness campaigns from 17 – 30 November this year.
The focus is to raise the profile of the specialised treatment, care and facilities available for 15-25 year old cancer
patients through the Youth Cancer Services and to increase the number of patients referred into the Youth Cancer
Services from their GP. Every day in Australia, three young people are diagnosed with cancer. Recognising the
early warning signs can be the first step towards diagnosis, timely treatment and the best outcome.
PR and media strategies, social media (facebook, twitter) and using existing health professional channels will
be the major communication channels for the campaign, with free resources available for downloading from
the website, inclusion in hospital or health service newsletters or on the web. If you are able to assist us with
raising awareness, please contact Hannah Baird on [email protected] or call (02) 9007 0219.
YCS Website
The existing YCS website is about to undergo a refresh and will be updated with the new YCS brand. Service
information and staff profiles will also be updated to reflect the many changes that have occurred since 2011.
This project is the precursor to a rebuild of the website in 2015.
All of the YCS teams and national advisory groups have attended a corporate photo shoot and the results as
evidenced in this newsletter are fabulous! The photos will be included in the website refresh and all staff will
be provided with an individual image file for personal and professional use.
Awards & Recognition
Congratulations to Ursula Sansom-Daly, (NSW/ACT YCS & Kids Cancer Centre) on receiving the ‘Rising Star’
PhD Award in the 2014 NSW Premier’s Awards for Outstanding Cancer Research.
The ‘Rising Star’ award honours an exceptional PhD student who is making significant progress and shows
the potential to make an impact in any field of cancer research. Ursula has undertaken a program of PhD
research that is pioneering the field of adolescent and young adult (AYA) psycho-oncology in Australia.
Early in her doctoral research, she addressed a gap in the field and developed a novel tool – ReCaPTure
LiFe – to teach coping skills to AYAs with cancer, delivered using videoconferencing. This is tremendous
acknowledgement for Ursula’s work and the field of AYA psycho-oncology.
Ursula has also been awarded the Tracey Goodall Early Career Award, from the Australian Association
of Cognitive and Behavioural Therapy (AACBT). The award provides encouragement for recent graduate
researchers and clinicians in cognitive-behaviour research and therapy. The award is to recognise research or
clinical innovation that has made an outstanding contribution to this field in Australia.
Natalie VanderHaak was awarded the Bob Holness Award at the Teenage Cancer Trust Conference in London
in July. The award acknowledges the best scientific poster at the conference. Congratulations Natalie.
Important dates
YCS Scholarships Open. . . . . . . . Sep 18
YCS Leadership Group PD Day . . Oct 29 Brisbane
YCS Scholarships Close. . . . . . . . Oct 10
COSA Scientific Meeting. . . . . . . Dec 2-3 Melbourne
YCS Scholarships Announced. . . Oct 28
World Cancer Congress. . . . . . . . Dec 4-6 Melbourne
National Network Meeting . . . . . . Oct 27-28 Brisbane
Youth Cancer Service Connecting young people living with cancer to specialist care and support