Download CAV Winter 2013_final - Cancer Action Victoria

No. A0049010V
Newsletter
W
ABN: 84971507717
Issue 8
ell winter is certainly upon us! I
hope you are all managing to keep
warm.
Our committee have certainly been busy since
our last newsletter, not only have they been tirelessly working on the Empowering Rural Consumers Project (a full report later in the newsletter) but are also participating around the State
on a variety of projects, committees for improving cancer care in Victoria.
Two of our committee members Marilyn Dolling and Roger Moulton recently attended the
Paediatric Integrated Cancer Services interactive workshop on exploring how successful
consumer participation can lead to systematic
and sustainable changes within healthcare. Pamela Williams continues her work with
the SMICS Regional ICT Multidisciplinary
team’s project, also Monash University Advanced Radiation Therapy Practice Advisory
Board and the Peter Mac Cancer 2015 Cohort
Study.
Winter 2013
We continue to collaborate with the Cancer
Council and have been asked if we can provide
case studies on the Victorian Patient Transport
Assistance Scheme (VPTAS) a program that
subsidises the travel and accommodation costs
incurred by rural Victorians who have no option
but to travel a long distance to receive approved
medical specialist services. Studies have shown
that the rebates are consistently insufficient to
recompense rural people who travel long distances for their cancer care. If you have a story
you would like to share please send it through
to me on [email protected]
This newsletter edition focuses on young people who experience cancer. It has been collated
with collaboration with ONTrac at Peter Mac
Victorian Adolescents and Young Adults
(AYAs). We extend our congratulations to AYA
for their considerable input. We wish to commend their work and thoroughly endorse their
successful contributions.
Sandra Slatter
President
Nicola Bruce and myself attended the steering
committee meeting on Cancer Council Victoria's McCabe Centre for Law and Cancer, and
Strategy and Support Division’s 'Making the
law work better for people affected by Cancer'
project, One of the components of this project is
Employment, including discrimination, access
to workplace rights and returning to work. A
member recently wrote to us expressing their
frustration at not being able to obtain work
since her cancer diagnosis. We have a lot of
anecdotal information on this but no collection
of stories. In an effort to source some data we
will be sending out a separate survey to the
membership – I urge you to look out for it,
complete and return to us.
Page 1
Cancer Action Victoria Newsletter—Issue 8 Winter 2013
Empowering Rural Consumers Project
Update
and support to the trainers and the consumers who take part in the training.
I am delighted to report the project is progressing in leaps and bounds with thanks to
a dedicated team who have been working
tirelessly over the past months.
As Empowering Rural Consumers is a consumer led project, for consumers, it is important to carry out ongoing evaluation
and monitoring. An example of one of the
issues we have faced is ‘health’- the ongoing health issues consumers can and often
face as a consequence of their treatment.
Members of our project team have consulted with diverse groups including Aboriginal, CALD, rural and remote and special
needs to ensure the training meets the
needs of these consumers. This information has been collated in a document to
assist the trainers understand the special
requirements when delivering the training
to the identified groups.
The training team has been preparing materials on governance, advocacy, becoming
an effective consumer and ways to participate. Some of these materials were presented recently to the training team for
their input and suggestions as part of the
‘train the trainer’ process.
We are now ready to take the next steps.
The training team is producing materials for
the trainers to use. The trainers will attend
a two day ‘Train the Trainer’ program at
the end of August. Following this, the Trainers will deliver a consumer competency
program in five regional areas.
We have appointed consumer liaisons to
work closely with the 5 regional Integrated
Cancer Services where the consumer training will be delivered.
Work is about to commence on the mentoring and peer support component of the
project. A study will be undertaken to inform the best way to provide support and a
process will be decided based on available
evidence. We will then provide mentoring
If you have any queries or would like further
information please make contact with Sandra
Slatter, Project Manager, Cancer Action Victoria, [email protected] or 0417 350 911.
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Page 2
Cancer Action Victoria Newsletter—Issue 8 Winter 2013
Adolescent & Young Adult Oncology: A
Revolution in Evolution
Generally considered to be a disease of the
ageing, cancer predominantly affects members
of our community aged 60 years and older. In
comparison to adults, Adolescents and Young
Adults (AYAs) aged 15-25 years rarely suffer
from cancer. However in many Western countries, including Australia, cancer is the leading
cause of disease-related death among young
people.
Each year in Australia, approximately 1000
AYAs are diagnosed with cancer. This compares to roughly 620 children under the age of
15 years. Unlike the paediatric sector, where
multidisciplinary care is concentrated in tertiary
specialist hospitals, the treatment of AYA patients is widely disbursed across public/private,
adult/paediatric, regional/metropolitan and community based healthcare facilities.
There are many factors which make the AYA
patient group unique. They experience the
same developmental challenges as healthy
peers including profound changes to the physical body, cognitive capacity and social functioning. They are also faced with the multiple challenges of negotiating cancer and its treatment
and facing their own mortality at a young age.
There is an increasing prevalence of cancer
diagnoses among this age group and significant
diversity in diagnosis types. For these patients,
there has been minimal improvement in survival
outcomes in the past 30 years in comparison to
the advances seen in childhood and adult cancer outcomes. Several factors are likely to be
contributing to what is now known as the “AYA
Survival Gap”. These include: a lack of timely
and accurate diagnosis as cancer is often not
the first consideration for young people; limited
access to, and participation in, clinical trials;
unfavorable tumour biology; limited AYA specific medical expertise and a relative absence of
age appropriate facilities and specialist psychological, social and emotional support.
million dollars over four years to Canteen Australia to establish Youth Cancer Services in
each mainland state. In 2012 -13, the Commonwealth Government committed an additional $18 million to support the continuation of
this work.
Within Victoria, ONTrac at Peter Mac Victorian
Adolescent & Young Adult Cancer Service was
established in 2004 and is hosted at Peter MacCallum Cancer Centre. As the most well established service of its kind in Australia, ONTrac at
Peter Mac is working with the Victorian & Tasmanian Youth Cancer Advisory Board and major oncology centers across the state to develop
a state-wide approach to care of young people
diagnosed with cancer. It is now recognised that
appropriate oncology care for young people requires a number of critical elements including
timely detection and diagnosis; prompt initiation
of treatment and access to clinical trials; international collaborative research to develop clinical and evidence based guidelines and care;
collaboration between paediatric and adult oncology specialties and importantly; access to
healthcare professionals who have skills and
knowledge about the specific biomedical and
psychosocial needs of this population group and
can provide developmentally appropriate care
and support.
The aims of this edition of the Cancer Action
Newsletter are to increase awareness of the
unique needs of AYA patients, describe the
work currently being undertaken by the Victorian and Tasmanian Youth Cancer Advisory
Board (YCAB) and discuss some of the many
reasons why specialist care is so essential to
improve outcomes for young people affected by
cancer.
Kate Thompson (Program Manager)
With increasing global recognition of the unique
specialty of AYA oncology, communities are
investing in the development of AYA specific
programs and services to bridge the gap in
care. In Australia, AYA cancer care has been
on the national agenda since a 2005 Senate
Community Affairs Reference Committee inquiry that recommended a review of care for
young people. In May 2008, the Commonwealth
Government announced the provision of $15
Page 3
Cancer Action Victoria Newsletter—Issue 8 Winter 2013
The Victorian & Tasmanian Youth Cancer
Advisory Board (YCAB)
vices for young people across Victoria and Tasmania”.
The Victorian & Tasmanian Youth Cancer Advisory Board was established in 2010 through
collaboration between ONTrac at Peter Mac
Victorian Adolescent and Young Adult Cancer
Service & the Victorian Department of Health.
This was done with the aim of providing an avenue for the voice of young people in the direction of oncology service development across
Victoria and Tasmania.
As a Board we meet 6 times a year and report
directly to the Victorian Department of Health.
We also have a broader consulting group of 20
consumers who provide advice and guidance to
us, the Department of Health and ONTrac at
Peter Mac. We have achieved several outcomes over the past 3 years including: advocacy for the development of youth friendly environments in health services across both states;
consultation and guidance about AYA inpatient
and outpatient space for the new Victorian
Comprehensive Cancer Centre Project; the provision of education and training to Health Professionals at numerous national and state
based conferences and defining specific research priorities in AYA oncology. Some of
these achievements are outlined in more detail
below throughout this edition of the Cancer Action Newsletter.
Our Board for 2013 comprises 12 members who
have had a cancer experience during the AYA
years as patients, siblings, bereaved siblings or
partners. We come from both rural areas and
metropolitan suburbs in Melbourne and Tasmania. We were treated in both paediatric and
adult hospitals for 9 different diagnoses of cancer. A total of 7 of us were initially misdiagnosed
and only 4 of us remember being told about the
possible impacts of our treatment on our fertility.
Only 3 of us saw other young people with cancer throughout our cancer journey. For all of us
the cancer experience still impacts today. For
these reasons and because of the factors which
make cancer in young people so unique, the
vision of our Board is to “Improve cancer ser-
If you have any questions, comments, requests
for our consideration, or would like more information please contact [email protected].
Kylie Lewis
Co Chair Vic/Tas Youth Cancer Advisory Board
The Victorian & Tasmanian Youth Cancer Advisory Board 2013
Page 4
Cancer Action Victoria Newsletter—Issue 8 Winter 2013
Special Focus in AYA Oncology: The Importance of Fertility for Young People with
Cancer
When a young person is diagnosed with cancer
they encounter many challenges. These can
include facing mortality, coping with treatment
and an altered self-image, loss of identity, managing relationships, disruption to education and
employment and an unstable financial situation.
A diagnosis for a young person is a traumatic
event. As survival rates for cancer improve,
more people are living with the long-term consequences of treatment including the potential
impacts on fertility.
Research into the long-term psychological impacts of cancer related infertility in young people with childhood or adolescent cancer suggests that awareness and understanding of fertility issues and options among survivors is low
[1-2]. Many young people cannot recall receiving fertility information at diagnosis and feel that
they receive inadequate information [3-4]. This
is reflected in the experience of our Victorian
and Tasmanian Youth Cancer Advisory Board
(YCAB). Research reflects some contributing
factors to suboptimal fertility management and
inconsistency in fertility management for young
people with cancer. Specifically, paediatric and
adult oncologists report limitations in 1) up to
date knowledge and training about fertility impacts and preservation options for young people
2) consultation time 3) age appropriate educational materials 4) access to fertility preservation
procedures 5) communication challenges in
handling fertility concerns with AYAs and their
parents [8] and 6) ethical concerns [5-7]. However, fertility preservation for young people with
cancer is vital to long term health and wellbeing.
Fertility needs to be considered a priority for
young people presenting with a cancer diagnosis; even though they themselves may not recognise its importance.
References
1.
2.
3.
4.
5.
6.
7.
8.
Mitchell, W. and S.S. Clarke, P, Care
and Support Needs of Children and
Young People with Cancer and their
Parents. Psycho- Oncology, 2006. 15:
p. 805-816.
Zebrack, B.J., et al., Psychological outcomes in long-term survivors of childhood leukemia, Hodgkin's disease, and
non-Hodgkin's lymphoma: a report from
the Childhood Cancer Survivor Study.
Pediatrics, 2002. 110(1 Pt 1): p. 42-52.
Zebrack, B., et al., Fertility issues for
young adult survivors of childhood cancer. Psycho-oncology, 2004. 13: p. 689699.
Oosterhuis, B.E., et al., Concerns about
infertility risks among pediatric oncology
patients and their parents. Pediatr
Blood Cancer, 2008. 50(1): p. 85-89.
Chong, A.L., et al., A cross Canada survey of sperm banking practices in pediatric oncology centers. Pediatr Blood
Cancer, 2010. 55(7): p. 1356-1361.
Wilford, H. and J. Hunt, An overview of
sperm cryopreservation services for
adolescent cancer patients in the
United Kingdom. European Journal of
Oncology Nursing, 2003. 7(1): p. 24-32.
Huyghe, E., et al., Banking on Fatherhood: pilot studies of a computerized
educational tool on sperm banking before cancer treatment. Psychooncology, 2009. 18(9): p. 1011-1014.
Quinn, G.P., et al., Impact of physicians’ personal discomfort and patient
prognosis on discussion of fertility preservation with young cancer patients.
Patient education and counseling,
2009. 77(3): p. 338-343.
Lucy Holland
Research Coordinator ONTrac at Peter Mac
Our Board advocates for increased awareness
about cancer related infertility in young people
and the associated long-term psychosocial impacts along with an increase in research in this
area. “Every young person diagnosed with cancer deserves the right to a discussion about the
impacts of treatment on their fertility, the opportunity to explore preservation options and have
these made as accessible as possible”.
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Cancer Action Victoria Newsletter—Issue 8 Winter 2013
AYA Palliative Care
Palliative care has much to offer young people
with cancer. However, misconceptions about
the role of palliative care and its association
with end of life care have resulted in it being a
scary concept for a lot of people; so much so
that there is even consideration of changing the
name!
Palliative care is a specialty dedicated to ensuring wellbeing and quality of life for people with
cancer or other life-threatening conditions [1].
Palliative care teams have specialist skills in
managing physical symptoms throughout the
cancer journey, especially pain. For this reason,
these specialists work alongside specialist oncologists who provide surgery, chemotherapy
and radiotherapy. Palliative care providers are
also specialists in promoting quality of life
through psychological and social support of patients and their families.
Although pain and other symptoms may be
more common in advanced cancers, they can
be, and often are, present early in the disease.
For this reason, patients with cancer may be
referred to palliative care even at the point of
diagnosis and often receive significant benefit
from such specialist involvement [2]. However,
on some occasions, patients are not referred to
palliative care for fear this may cause distress to
them or their family because of the misconception that these specialists only become involved
when the patient is nearing the end of life. Research has specifically shown that there may be
a delay in referring patients with pain or other
symptoms to palliative care for fear it may lead
them to think that their doctors are “giving up” or
have little hope [2]. However, this may prevent
patients from accessing specialist pain and
symptom management.
can help young people understand their illness
and treatment. Community palliative care teams
and general practitioners can provide symptom
or psychological support to people in their
homes.
Palliative care is a specialty dedicated to minimising the impact of cancer and its treatment on
young people. Though these professionals do
have specialist skills in providing excellent care
for people whose cancer is incurable, the profession extends well beyond this to the care of
people at all stages of their disease. The best
palliative care is directed to the individual and
their unique situation to help them achieve their
goals [5].
References
World Health Organisation. WHO definition of
palliative care, 2005. 2006 [cited June
2013]; Available from: http://www.who.int/
cancer/palliative/definition/en/.
Pritchard S, Cuvelier G, Harlos M, Barr R. Palliative care in adolescents and young adults
with cancer. Cancer. 2011;117
(21523753):2323-8.
Wein, S., Pery, S., & Zer, A. (2010). Role of palliative care in adolescent and young adult
oncology. Journal of clinical oncology, 28, 5.
Bell CJ, Skiles J, Pradhan K, Champion VL.
End-of-life experiences in adolescents dying
with cancer. Supportive care in cancer :
official journal of the Multinational Association of Supportive Care in Cancer. 2010;18
(1):8.
George R, Criag F. Palliative care for young
people with cancer. Cancer Forum. 2009;33
(1):5
Dr Rachel Hughes
AYA Palliative Care Fellow, ONTrac at Peter Mac
For young people with cancer, research is
emerging which illustrates that they may experience different profiles of symptoms and pain
compared to adults with cancer [3]. For this reason and because engagement with young people differs from that required with adults, there
has been shown to be significant benefit in the
early involvement of palliative care as part of
comprehensive multidisciplinary patient management. This also assists in any transition to
end of life care should this be required. For AYA
patients this is because palliative care teams
understand their wish for truthful communications and to be involved in the decision making
process [4]. The palliative care doctor or team
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Cancer Action Victoria Newsletter—Issue 8 Winter 2013
Personal Reflection: Jack Richards
I have had this piece of writing on my mind for
about 5 or 6 weeks now. But today I put down
the first word. I knew that in writing this, I
wanted to be as open and honest as possible.
For that, I knew I had to be in the right state of
mind. I knew that while writing, I would be dwelling on topics that will inescapably bring me
down. But over the last couple of weeks, I have
been feeling good. Really good! I’ve seen a lot
of friends, played a lot of guitar, gotten back into
cooking in a big way and have all round been
feeling healthy. While being careful never to
delude myself, on a daily basis I guess I allow
myself to be contented by the sincere and comforting lies of those around me. I change my
way of thinking to a simpler version. I remind
myself that 1% isn’t impossible, then stop myself from completing the thought (as I would on
any other occasion) with “But it is improbable.”
Today I was told from a CT scan that there is a
chance my tumour has spread to a part of my
brain. There is no easy contentment for me right
now. And I will write honestly for you.
I was diagnosed when I was 16, with stage 4
Ewing’s Sarcoma - a cancer that typically appears around puberty. Sixteen was actually unusually old for this disease. I was told that with
aggressive treatment, I had a 30% or 40%
chance of being declared cured. I was also told
that if I were to relapse, then my chances of
being cured dropped significantly. So what I
really heard in those first few appointments with
my new oncologist was that I had about a 60%
or 70% chance of Ewing’s Sarcoma ultimately
killing me. Heavy stuff for a 16 year old to hear.
I went numb for weeks.
I am now 21, and after 2 relapses, High dose
Chemotherapy, Radiation, Stem cell transplants, and two surgeries, I am in palliative care.
Honestly, I didn’t know what palliative care was
when I was told about it. I saw my doctor more
than a few times before she kindly spelled out
exactly what her job entailed regarding me. I
was taken a little aback, but not surprised. And I
was very appreciative. She is warm and comforting, but never gives me false hope. And I
have never felt a shred of pity from her. It’s obvious to me that that is a very difficult thing to
do.
From having such a dramatic diagnosis over the
last 5 years, I have had almost every person I
know try and “help” me at some point in time.
My close family and friends have done an
amazing job. I am consistently reminded how
lucky I am to be surrounded with such loving
and genuine people. But, on the other hand, I
have had two people (one I have never met) tell
me that I’ll be ok if I just change to an organic
vegan diet, and commit to regular enemas
made from a special organic coffee (apparently
the caffeine and antioxidants work better in your
bum!). While most of these well-meaning suggestions I can just shrug off (and some laugh
off!), it gets absolutely exhausting dealing with
these people because most of them want me to
be their version of hopeful. Which means I have
to put on an act and tell sincere but fragile people that I’m “going to make it”. I do it to protect
them. I do it because if I don’t, they won’t know
how to react. Some will even refuse! Some will
tell me that I’m not allowed to think that way and
that I can never give up hope.
These are the extremes of course, but even the
average well-wisher can be a tiring experience.
Little phrases like, “I feel so sorry for you” and
“my god, you poor thing” do nothing for my morale and remind me of things that I’m probably
trying to not think about at that point in time.
They sometimes cry, and they sometimes just
ask me how my cancer is then go dead silent
when I tell them. I’ve had people stare at me
and stutter something along the lines of “that’s
too bad”, then change the topic with awkward
and boring conversation.
The religious are the best. They tell me they will
pray for a cure. Or that I should pray. Or that it’ll
be ok because I’m a good person and I’ll go to
heaven and we’ll all meet again one day in
paradise. I’m not religious myself, but in those
early days of diagnosis, I did pray. I prayed and
I wished for any sort of a sign. Days later I was
told the cancer had spread to the pleura of my
lung. Which to me said either there is no god, or
worse, there is a god, and his answer to my
prayer was a very loud, resounding “No.”. Still
I’m told there are people who pray for me every
day. I appreciate the gesture, but I can’t help
and be somewhat dissatisfied with how they
have chosen to help me.
The reality is, I am dying. Probably in the next
few years. Probably after more debilitating treatments. And when it comes to the close, I will
probably suffer, at least to some extent. And I
wish I could talk about it more often. After all, I
think about it every day. The concept doesn’t
scare me anymore, but it seems most people
around me are terrified on my behalf. There are
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Cancer Action Victoria Newsletter—Issue 8 Winter 2013
so many meaningful conversations that I want
to have with people that I never can. The topic
just changes the way people think about me,
and some treat me so drastically different after
hearing the full story.
My Doctor, my social worker and the team at
ONTrac at Peter Mac give me comfort and solace with my condition. They know all of the
medical details that others wouldn’t quite grasp.
They know what my future will be like. They
know how desperate and sad and painful and
short my situation is. But without ever being unrealistic or instilling false hope, they somehow
contribute to making sure I’m not a desperate or
sad human being. They tell it how it is, no spin.
Then proceed to assure me that I can still do
excellent things, and be an excellent person.
They encourage me to make my life, shall I say,
more potent. And to enjoy everything I have the
capacity to enjoy. Some days, this can be easy.
Some days not so easy. But I know they would
listen to me on any day.
This piece may depress you, reader. But I assure you, 95% of the time, I am gloriously
happy! I do a lot with my life. I make funky music, I laugh with friends, I cook delicious meals
then eat too much and regret it instantly. I drive
long distances to see incredible sights, I’ve
climbed mountains and walked canyons. If I’m
able I will climb and walk more. I still occasionally flirt with a pretty girl, I stay out past my bedtime, and sometimes drink a bit too much with
good company. Just like any other 21 year old!
Though I deal with the heaviest thoughts about
my future years on a daily basis, I try and never
let that get in the way of today or tomorrow. ONTrac at Peter Mac and the palliative care team
help me with this. Usually, in just a few short
sentences. But they are the sentences that noone else seems to be able to construct. Let
alone deliver in anything but a dreary and depressed tone. And for this, I can’t thank them
enough.
Personal Reflection: Anders Wong
My name is Anders and I am 22 years old. I was
diagnosed with a pineal germinoma at the age
of 16 as I was finishing up year 11. Before my
diagnosis, I had only ever met one person who
had been diagnosed with cancer at a similar
age to me. When I first started getting headaches and double vision, I never expected that
less than one month later, I would be sitting in
the waiting room at the paediatric cancer clinic. I
was physically fit, doing well at school and enjoyed a wide range of extra-curricular activities,
especially music.
Happily, five and a half years on, I am again
physically fit, am now studying hard at university
and enjoy a range of hobbies and volunteer
work. I was lucky enough to only need one
course of radiotherapy, although without the
support from ONTrac at Peter Mac, the Victorian Adolescent and Young Adult Cancer Service, I probably wouldn’t be where I am now.
Through the different services, I was assisted
through problems including those with school,
family and myself.
Cancer care in the AYA age group is difficult. It
is an age group where one starts finding their
feet in the world and establishes the roots upon
which to build their life. It is also a time when
strong social ties are formed and possible lifelong relationships are started. Thus, it is paramount that much thought and action is given to
the care of these patients to ensure that they
can get a solid foundation of education and
training, and social support to allow them to
achieve their goals and fulfill their potential. I
believe that appreciating the unique stage of
development encountered by AYA patients,
then allowing access to support services to
thrive through this life stage is imperative; those
who use it are forever grateful.
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Cancer Action Victoria Newsletter—Issue 8 Winter 2013
Personal Reflection: Autumn Tansey
An incredible shift happened 2 years ago when I
was diagnosed with Bowel Cancer at age 22.
The C-bomb created an earthquake in my body,
my mind and my spirit.
It was uncanny, but the sense of relief was
over-whelming; I finally felt that something could
be done to make me better, that now I had an
excuse to breathe and begin the healing that I
had been craving for so long.
After a stint with abdominal surgery I was
slammed with chemotherapy, and my already
shaken confidence was evaporating before my
eyes. With each cycle, I was physically and
emotionally degenerating. At that point, I was so
fearful for my life, but I was also afraid of
change. After completion of a toxic 6 months
and a couple of blood tests, I was labeled with a
genetic predisposition called Lynch Syndrome,
or Hereditary Non-Polyposis Colorectal Cancer
(HNPCC).
My heart wells with gratitude for my dear Aunty
Kay, who opened up a world of healing I wasn’t
aware of. She divulged all her wisdom and
knowledge and introduced me to others who felt
the same way. With their support, I was able to
feel my emotional and physical confidence returning. I was finally feeling empowered again,
and knew how to put my broken self back together.
Although I thought I didn’t want to make any
changes to my life, the deep yearning from my
soul led the way. And now for the last two years
I have spent my time evolving a new and spectacular life!
This is my experience, unique, like every single
other AYA that goes through the process of a
cancer diagnosis. It is vital that our stories are
listened to, so that more people can have access to the incredibly supportive opportunities
that have eased this journey.
YCAB Area of Focus
Education & Training for Healthcare Professionals
One of YCAB’s key areas of priority and interest
is the education, training and up-skilling of
healthcare professionals and others working
with young people diagnosed with cancer.
YCAB has contributed to the development of a
range of AYA cancer education and training
opportunities and resources for professionals,
including the development of the first Australian
Post Graduate Certificate in Adolescent Health
and Welfare (Oncology) run through The University of Melbourne. Launched in 2011, the
course aims to enhance the knowledge and
skills of healthcare, education, research and
community-based professionals who work with
young people impacted by cancer and their
families throughout Australia. It explores: adolescence and young adulthood as a unique lifestage; the specific impact of a cancer diagnosis
and its treatment during the AYA years; policy
and practice in this emerging field and; ways of
improving health outcomes for young people
diagnosed with cancer. YCAB provided regular
consultation to the National Curriculum Advisory
Committee responsible for the development of
this course. This advice was directly incorporated into the revision and development of content and the refinement of assessment tasks.
YCAB were also key contributors to the development of media resources for the course which
feature interviews with a number of Board members and their loved ones about their cancer
experience. Students of the course consistently
identify these resources as the most powerful
learning tool. YCAB is currently involved in the
development of a similar interview-based media
resource with ONTrac at Peter Mac Victorian
Adolescent and Young Adult Cancer Service for
use in the delivery of education and training
more broadly. The Board also continues to present to national conferences about youth consumer engagement and the specific issues
which define this specialist field of oncology
care.
Sam Van Staalduinen
Program Coordinator ONTrac at Peter Mac
Kate Thompson
Program Coordinator ONTrac at Peter Mac
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Cancer Action Victoria Newsletter—Issue 8 Winter 2013
YCAB Areas of Focus
YCAB Area of Focus
Shaping Research: AYA Survivorship Care
The Development of a Smartphone Application (App)
YCAB’s efforts to improve outcomes for young
people with cancer focus on multiple domains,
including education and information provision,
the development of clinical services, awareness, advocacy and research. As AYA oncology
is a relatively new and emerging field, the need
for research into the medical, psychological and
social outcomes experienced by young people
is essential to build understanding of the unique
issues faced and improve services and care.
The Board’s involvement in various local and
national AYA research activities has grown considerably over the last three years; most recently in the area of survivorship. In 2011,
YCAB identified a lack of services available to
young people in the post-treatment survivorship
phase. With recognition and understanding of
the unique challenges faced during this time,
including re-adjusting to the ‘new normal’ the
Board advocated for change. This led to the
development of a project proposal between ONTrac at Peter Mac Victorian Adolescent and
Young Adult (AYA) Cancer Service and YCAB
to develop, implement and evaluate a pilot
model of shared survivorship care for young
people completing treatment for cancer. This
was successfully funded by the Victorian Department of Health in 2012. The project is based
on internationally recognised principles of youth
survivorship care which include: care coordination and planning; the promotion of selfmanagement and self efficacy; facilitating
shared care between acute hospital services
and primary care services or general practitioners. Several YCAB members sit on the project’s steering committee, providing advice and
guidance about the strategic direction of the
project, its implementation and the evaluation.
The entire Board is also currently guiding the
development of an AYA survivorship resource
and contributing to content. The project is currently underway in Victoria and is being run
through ONTrac at Peter Mac, Peter MacCallum
Cancer Centre, The Royal Melbourne Hospital
and Bendigo Health. It is hoped that the
evaluation of this project will demonstrate the
benefit of assessing and responding to patient’s
needs post treatment completion and will result
in a model of care which can be implemented
throughout Australia. We’ll keep you posted!
Information and communication technologies
are important tools which connect young people
to education, information and peers, whether
they experience illness or not. With increasing
use of technology and social media globally, it is
imperative that services for AYA patients embrace and optimize current technology platforms. For this reason, and with recognition of
the broad geographical spread of AYA patients
treated throughout Australia, one one of YCAB’s
key priorities for 2013 involves the development
of a mobile-optimized website or Smartphone
application (app). The app aims to: support
young people from diagnosis, throughout treatment and beyond through the provision of AYAspecific information and resources; promote
patient self-management and; encourage peer
support and connection. Some of the features to
be incorporated into the app include mood and
symptom trackers, an appointment calendar
with built-in reminders, the ability to set goals
and integration with social media sites including
Facebook or Twitter. Users of this app will also
have access to a range of resources and information which will be organised in a way that
allows them to control how much information
they receive, the nature of this information and
the timing of its delivery. Funding for this exciting project has been generously provided by the
Victorian Department of Health, ONTrac at Peter Mac Victorian Adolescent and Young Adult
Cancer Service and Cupcakes for Cancer Inc.
Still in the early stages of development and requiring some additional funding, we are hoping
to launch the app in mid-2014 - so stay tuned!
Sam Van Staalduinen
Kate Thompson
Sam Van Staalduinen
Kate Thompson
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Cancer Action Victoria Newsletter—Issue 8 Winter 2013
YCAB Future Hopes & Plans
Our hope for the future is to continue with the
work we do, to continue to advocate for change
for the improvement of services and outcomes
for young people with cancer and their families.
For 2013 we have prioritized four areas for development that we perceive to be gaps in current AYA care. These priorities have been independently funded by the Victorian Department
of Health. They include:
1.
The development of a Smartphone App
to increase access to age appropriate
information and support for young people
no matter where they live.
2.
The development of a referral guide for
services specific to Victoria and Tasmania.
3.
Supporting the continued education and
training of healthcare professionals caring
for young people.
4.
Building awareness of the identity and
work of YCAB through branding.
We hope to have the opportunity over the coming 12 months to keep you updated about the
Board’s progress. Please contact us if you
would like more information about any of the
content presented in this edition of the Cancer
Action Voices Newsletter at
[email protected]
Kylie Lewis
Co Chair Vic/Tas Youth Cancer Advisory Board
AYA Services & Supports
Throughout Australia in the last 10 years, services have begun to develop to meet the unique
needs of those facing a diagnosis of cancer during the AYA years including patients, parents,
partners, siblings and peers. The following list of
organisational contacts highlight some of the
main services and supports available to AYA
patients and their loved ones. For all other enquiries, please contact ONTrac at Peter Mac at
the details provided below.
ONTrac at Peter Mac Victorian Adolescent &
Young Adult Cancer Service
The Victorian Adolescent and Young Adult Cancer Service supports young people and their
families throughout Victoria and Australia. It provides direct clinical care to patients and families,
secondary consultation to all with education and
training, a comprehensive AYA research program and awareness and advocacy: 03 9656
1744 [email protected]
http://www1.petermac.org/ontrac/
Youth Cancer Services & the Youth Cancer
Services Portal
Nationally, youth cancer services are developing in each mainland state. Details for each service and general information about AYA cancer
can be found in the Youth Cancer Portal:
Youth Cancer Services Portal: http://
www.youthcancer.com.au/
CanTeen (12-24 years)
CanTeen is a national non-government organisation dedicated to the support of young people
experiencing cancer as patients, siblings or offspring through information provision, peer support, camps and recreation days:
1800 226 833 www.canteen.org.au
Now What
Now What is a website established by CanTeen
that aims to educate, connect, support and empower young people throughout their cancer
experience. It contains information, resources
and stories from people who have experienced
cancer during the AYA years:
www.nowwhat.org.au or 1800 669 942
Warwick Foundation (18-40 years)
The Warwick Foundation supports young Australian’s who experience cancer up until the age
of 40 years. It provides information and resource provision, referral to professionals, peer
support and wellness escapes:
(03) 9826-6197 http://
thewarwickfoundation.org.au/
Cancer Council Victoria
A not for profit organisation that supports patients through research, information provision,
cancer connect and financial assistance:
131120 www.cancervic.org.au
Carers Victoria
Provides emotional support and counseling,
practical support and respite, information and
advice and group support for carers through
Connected Carers
(03) 9396 9500 www.carersvictoria.org.au
Leukaemia Foundation
A foundation established to support those with a
haematological (blood) cancer through emotional support, counseling, transport to hospital
and accommodation:
1800 620 420 www.leukaemia.org.au
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