The psychological impact of living with and beyond cancer - report
2014 IHBI Advances Edition 20
1. December 2014 edition 20
EDITION 20
issue
inthis
Understanding safe sun
exposure for healthy
vitamin levels
Small changes show big promise
in improving older patient care
New IHBI advocates ensure
patients have a voice
Weight loss no simple matter of
diet or exercise
Aiming for early prostate
cancer diagnosis and better
treatments
How your donations help –
Repairing and regrowing body parts
Prevention Intervention Translation
The link between sun over-exposure and the risk of skin cancer is well known. Not as well known is a person’s
need for some sun exposure to ensure healthy levels of vitamin D. Low levels of the vitamin are known to be
associated with cardiovascular disease, diabetes, multiple sclerosis and several cancers.
PhD student Shanchita Khan is trying to find the
right balance between sun under- and over-
exposure as part of a world-first study at IHBI
involving people who work indoors. ‘I am trying
to understand whether regular short periods of
exposure to natural sunlight improve a person’s
vitamin D levels,’ Ms Khan says.
A person’s vitamin D intake comes mainly from
the sun, through solar conversion in the skin,
she says. Despite an abundance of sun, almost
half of South East Queensland’s population has
low vitamin D levels at some point during the
year.
‘Australia has high rates of skin cancer and we
need sun safety messages to reduce people’s
risks. It’s good to see that people have become
increasingly aware of the risks of sun over-
exposure and are adjusting their behaviour.
‘Yet very little is known about safe sun exposure
practices. How much skin do we expose?
When do we go out in the sun? How long
do we need to stay in the sun to get enough
vitamin D produced in our skin?’
Ms Khan is working with Professor Michael
Kimlin on a pilot clinical trial that involves
exposing people to natural sunlight in controlled
conditions and trying to determine whether the
exposures improve their vitamin D levels. Given
the participants’ indoor work, the sun exposure
represents a lifestyle intervention that aims to
improve their wellbeing.
The people involved are provided with sunscreen
to ensure responsible sun exposure and
monitored using UV dosimeters. Ms Khan takes
blood samples to check for vitamin D levels.
The data collected is being analysed for review
and publication in a peer-reviewed journal.
Consideration will then be given to following up
with a larger-scale trial using funding that would
need to be secured.
‘My long term goal is to develop guidelines
and provide education for people from different
cultural backgrounds about healthy levels of sun
exposure,’ Ms Khan says.
‘Personally, I have been interested in vitamin
D since learning about my own vitamin D
deficiency. I have since found out that this
is very common in people from the Indian
subcontinent.’
Skin cancer is the most common form of
cancer in Australia, making up 80 per cent of all
cancers diagnosed. Queensland has the highest
rate of skin cancer in the world, with about
133,000 non-melanoma skin cancer cases
diagnosed in the state each year.
Being sun safe1. Adequate vitamin D levels aregenerally thought to be reachedthrough regular daily activity andincidental exposure to the sun.2. Sunscreen, protective wear suchas shirts, hats and sunglasses arerecommended for prolonged sunexposure, even in the early morningand late afternoon
3. Deliberate sun exposure of morethan 10 minutes is not advisedbetween 10am–2pm.
4. Even during Brisbane’s winter, atmidday skin damage can occur inless than 30 minutes
PhD student Shanchita Khan
2. December 2014 edition 20
Christmas is known to be a time of
overindulgence, often followed with New
Year’s resolutions to lose the weight gained.
But losing weight is not a case of simply
telling people to eat less and exercise
more. Instead, it is a complicated equation
involving psychology and physiology.
Professor Neil King is working at IHBI on
improvements to weight loss strategies to prevent
and treat obesity, identified as a national health
priority and linked to cardiovascular disease,
diabetes and kidney cancer.
‘My research investigates susceptibility to weight
gain and resistance to weight loss,’ Professor
King says. ‘I am interested in understanding why,
in the same environment, some people gain
weight and others remain lean. The research also
aims to discovery why some people do not lose
the expected weight with exercise or diet.’
One of Professor King’s landmark studies found
supervising exercises, to ensure consistency,
resulted in a large variability in the weight lost
among participants during a 12 week program,
with some losing up to 14kg and others gaining
up to 2kg.
‘The people who lost less weight than expected
were found to be susceptible to increased
hunger and likely to eat more,’ he says. ‘We used
a nutrient and taste food preference technique
and found that after an exercise session, obese
people had a higher preference for high fat or
sweet foods and a higher impulsivity – meaning
they were more likely to eat the wrong foods.’
Professor King says people mistakenly believe
they can have a sweet or fatty treat as a
reward for exercise. ‘The rate of energy intake
associated with food is a mismatch for the rate of
energy expended during exercise. For example,
it might take 45 minutes of intense exercise to
expand the similar energy value of a doughnut.’
Adding to the complications are a person’s
psychological and physiological characteristics.
Professor King has used a human appetite lab
and a range of appetite tools to identify and
characterise susceptibility to weight gain and
resistance to weight loss.
‘Our results show that food intake is an important
contributor to weight gain and resistance to
weight loss. We will use the results to continue
research tackling obesity by improving effective
weight loss strategies and reducing the
economic burden associated with obesity.’
Weight loss no simple matter
of diet or exercise
New IHBI advocates
ensure patients have a voice
IHBI undertakes a diverse range of cancer
research ranging from cancer biology and
genetic make-up to sensitive diagnosis,
targeted therapeutics and treatment
regimes, nursing and palliative care, public
health and women’s wellness after cancer.
The work has collaborators such as
oncologists, clinicians, nurses, clinical trial
groups, other research institutes, cancer
support groups, government agencies,
pharmaceutical and biotechnology companies.
But the people who need to be remembered
in the research are those who will one day
benefit—cancer patients.
IHBI has a track record of involving patients in
designing research projects and progressing
research from the laboratory to clinics, where
treatments are provided or technologies tested.
Now, IHBI has taken the additional step of
setting up a Consumers Bureau to formalise the
involvement of patients in the process.
Under the guidance of Professor Rik Thompson,
who has recently arrived at IHBI with a wealth of
expertise in breast cancer research, the bureau
will enable IHBI cancer researchers to access
patient consumers in a structured framework.
The bureau will ultimately be extended to the
many other diseases that IHBI researches.
Breast cancer advocates Leonie Young and Pat
Hancock will help launch the bureau and bring a
wealth of personal experience, knowledge and
understanding that they aim to use to provide
patients with a voice at all stages of IHBI
research, from the planning to the execution of
clinical trials.
Leonie Young says she fell into her position
as a breast cancer advocate after she was
diagnosed in 1987 at the age of 32. ‘There was
not the same support available in 1987 as there
is today – and there certainly was not a lot of
understanding about younger women’s issues,’
Ms Young says. ‘I did not set out to become an
advocate, but asked questions out of need and
inadvertently became one. I did what I could to
make a difference.’
Ms Young says being an advocate does not
necessarily mean joining a committee or
speaking publicly. ‘It can be just talking to
people, telling them they have a right to ask
questions and be involved in decisions made
relating to their treatment.’
People who have experienced cancer can work
in partnership with researchers in planning,
monitoring and developing health services
and research processes, Ms Young says.
‘Consumer advocates can be a powerful force
and bring a unique and vital perspective to
research and health care decisions and policy.’
Ms Young is the chairwoman of the Australia
and New Zealand Breast Cancer Trials Group’s
consumer advisory panel, a member of the
National Breast Cancer Foundation’s panel and
a Wesley Hospital Kim Walters Choices peer
support coordinator.
She has worked with IHBI professors Patsy
Yates and Debra Anderson as a consumer
representative on research projects such as
the Pink Women’s Wellness Program. ‘I enjoy
learning about the research. It’s fascinating.
These researchers are working hard to make a
difference for people affected by cancer.’
Helplessness is what Pat Hancock felt when
she started receiving chemotherapy and
radiation therapy following her breast cancer
diagnosis in 2001.
‘My memory of that time was an
overwhelming feeling of helplessness,
of not, for the first time in my adult life,
being in control of my own destiny,’
Ms Hancock says. ‘I think that was what
initially drove me to advocacy – a need to
take control again.’
Using a professional background in public
policy and governance, Ms Hancock completed
an advocacy training program and ultimately
joined the National Breast Cancer Foundation’s
research advisory committee.
Ms Hancock says consumers, as a voice for
patients, need to be part of the conversation
when it comes to shaping cancer research
agendas. ‘They are the reason the research is
being undertaken and can help keep the focus
on why the research is being done.’
She says a person should not let a limited
scientific insight deter them from being part
of the conversation. ‘Consumer advocates,
including me, have limited knowledge of the
science of breast cancer compared with
researchers. Their experience gives a different,
but equally important, perspective.
‘Being able to contribute to better outcomes is
what I find satisfying – a better understanding of
the disease and ultimately prevention.’
Tips to create healthy habitsin your family
What advice do you have for peopleundergoing cancer treatment?
Pat Hancock: Take the diagnosis andtreatment one step at a time. Breaking itdown means making decisions at each stageand not becoming overwhelmed.
What do Pink Ribbon Day and BreastCancer Awareness Month mean to you?Pat Hancock: It brings home to me how farwe have come in understanding cancer buthow much further we have to go.
Why establish a Consumer Bureau?Leonie Young: It is about connectingresearchers and informed consumerswho have had cancer, building on theirexperiences and expertise and benefitingfrom it.
Healthy holiday habits
No one eats until they are fit to burst on
a normal day. Christmas should be no
exception.
Do not skip breakfast because of plans
for a big lunch. Have a normal breakfast
so there is no temptation to gorge at
lunch or dinner.
Stick to an exercise routine, as would
be the case during a working week.
Do not abstain from drinking, but limit
alcohol consumption.
Avoid high fat and high sugar foods.
Eat fruit, vegetables, dairy, meat, fish,
poultry, breads and cereals.
Drink lots of water, rather than soft
drinks.
Protect against the sun to avoid sun-
stroke, especially after overindulging.
Professor Neil King
Leonie Young (left) with Pat Hancock
An important step in improving the strategies is
to reduce the focus on weight loss and ensure
people understand the health benefits of exercise
beyond weight loss. ‘It is about educating the
public and health professionals,’ Professor King
says. ‘We need to be more aware and realistic
about the potential for exercise to help people
lose weight.’
Using psychological and physiological
characteristics, he believes it will be possible to
identify the most effective, tailored strategy to suit
each person.
3. The power to
Older patients account for half of hospital
inpatient days in Queensland and their
hospital stays tend to be longer. They are
slower to get back on their feet after an
illness or injury, have more complications
and are more likely to require extra
community care after discharge.
But an IHBI research project is designing better
and cheaper hospital care, with results already
showing a 10-15 per cent reduction in average
hospital stays for older patients, and plans to
continue making improvements with new funding.
Adjunct Professor Alison Mudge has received
Queensland Government Accelerate Partnerships
program funding to work with staff members
from a variety of wards and investigate ways
to introduce important components in the care
of older patients such as early mobility, good
nutrition and activities to keep the mind active.
It advances research conducted with funding
from the Australian Centre for Health Services
Innovation, a partnership between QUT, the Royal
Brisbane and Women’s Hospital, The University
of Queensland and Queensland Health to find
better and lower cost ways of delivering health
services. The pilot study in a vascular surgical
ward showed shorter hospital stays, fewer
complications and less need for convalescent
stays after the acute condition was resolved.
‘We know hospital environments and care models
are not ideally designed for older patients,’
Adjunct Professor Mudge says. ‘Some of the
common complications of acute illness and injury
such as delirium, also called acute confusion,
are actually made worse by features such as
constantly changing staff, rooms that all look the
same, noisy or light rooms at night, lack of clocks
and windows to let people identify the time.
‘Small changes to the way care is delivered can
reduce delirium by up to one third. It is changes
such as staff identifying themselves, taking time to
remind patients where they are, providing familiar
and reassuring routines and helping make the
ward quiet for sleep.’
There is a direct link between delirium and
longer hospital stays. ‘Reducing delirium can
result in reduced complications and prevent
longer hospital stays – both issues that have an
impact on healthcare costs,’ Adjunct Professor
Mudge says.
The real challenge is how to change staff
behaviour in the way care is delivered. Public
hospital wards are busy, complex environments
with constantly changing staff. Yet it will be the
staff making sure there is time for those small
changes that make a big difference to older
patients.
‘Our own previous experience is that it is relatively
easy to make one of the initiatives work for a
time, but much harder to make it stick,’ Adjunct
Professor Mudge says, ‘so our study includes a
much more structured social science approach to
that challenge.
‘The ultimate aim is to produce a fundamental
shift in how care of the older patient in hospital is
viewed. We need to embed the new care models
in the wards, ensure staff members are on side so
the models are sustained and then spread them
to other hospitals.
‘We have seen that our efforts in our own hospital
have gained momentum as staff members
recognise that they have the ability to change the
system to deliver better care.’
The healthcare system will face challenges, with
an increasing life expectancy, the ageing of Baby
Boomers and the increased risk of that generation
needing care for heart disease, cancer, dementia
and stroke – all diseases that are more common
in older people.
Adjunct Professor Mudge says the newly funded
study aims to provide stronger data and engage
decision-makers in allocating funds and staff
members, all with the aim of introducing the
small changes needed to improve care for older
patients.
The study, called CHERISH, has support from
clinical researchers in medicine, geriatrics,
nutrition and dietetics, physiotherapy and nursing,
as well as academic researchers in health
economics, statistics and knowledge translation.
It included Researchers from QUT, The University
of Queensland, the University of Sydney, the
University of Melbourne, the University of Adelaide
and Harvard University.
‘Most of us share the ambition to grow old
gracefully,’ Adjunct Professor Mudge says, ‘and
we need to make sure our community and care
systems support this goal.’
Small changes show big promise
in improving older patient care
Movember is well and truly on the
fundraising calendar, with $580 million
raised to date and funding provided to
more than 800 programs in 21 countries.
The campaign involves men growing
moustaches and the community providing
their support, in the name of fundraising
for men’s health programs and raising
awareness of the health risks men face.
Among the recipients is IHBI Professor Colleen
Nelson, who is leading a team of international
researchers awarded $4.25 million in Movember
funding to develop better prostate cancer
treatments. The funding was announced through
the Prostate Cancer Foundation of Australia in
March and progress is already evident, including
an international student exchange and a research
summit to share knowledge among collaborators
in the team.
The focus of much of the research at the
Australian Prostate Cancer Research Centre –
Queensland (APCRC-Q), a joint initiative
between IHBI and the Princess Alexandra
Hospital, is on understanding prostate cancer,
identifying biomarkers for diagnosis and
developing treatments. But researchers in
Professor Nelson’s team are also aware of the
importance of leaving the lab to share their
knowledge with the community and give
something back to the Movember Foundation.
Professor Nelson is leading by example, as
a member of the Movember Foundation’s
board of directors. ‘Prostate cancer is a global
problem,’ she says, ‘and the philosophy behind
the Movember Foundation funding is that lead
researchers and their teams collaborate across
borders and disciplines to develop a far better
understanding of all aspects of this disease
and to achieve results more quickly. I agree
with the philosophy and believe it can really
advance knowledge in the field and result in
improvements for cancer patients.’
Her APCRC-Q team has raised more than
$18 000 for the Movember Foundation and
increased the amount this year by more than
$6 000 through four fundraising events. To
coincide with Movember, senior APCRC-Q
researchers travelled to Rockhampton to
present their work to the Central Queensland
Prostate Cancer Support Group.
The researchers are tackling prostate
cancer using a multitude of avenues, such
as investigating the tumour environment to
develop more effective therapies and detecting
circulating tumour cells in blood to understand
cancer spread and progression. They are also
working with international collaborators on a
Aiming for early prostate cancer
diagnosis and better treatments About prostate cancer risk factors
• Gender: prostate cancer only affects men, as
women do not have a prostate gland
• Age: the older a man, the more likely he is to be
diagnosed with prostate cancer
• Family history: a man with a father or brother who
developed prostate cancer is more than twice as
likely to develop the cancer
• Ethnicity: increased occurrence in black African
and Afro-Caribbean males
• Lifestyle: poor diet and exercise
About the Australian Prostate Cancer Research
Centre – Queensland
• APCRC-Q aims to improve prostate cancer clinical
management with better diagnosis and treatment
strategies for Australian men
• More than 80 academic and clinical faculty
researchers and trainees
• Spans the full spectrum of prostate cancer
research, including discovery, diagnostic and
therapeutic development, and health services
About the Movember Foundation
The foundation aims to achieve:
• Men living with prostate or testicular cancer have
the treatment and care needed to be physically
and mentally well
• Men and boys are mentally healthy and take
action to remain so
• When men and boys experience mental health
problems they take action early
• Men and boys with mental health problems are
not discriminated against
Who are AusHSI?
The Australian Centre for Health ServicesInnovation is a partnership between QUT, TheUniversity of Queensland and Queensland Health.
What do they do?
AusHSI brings academics and health professionalstogether to do important but simple researchto find better and lower cost ways of deliveringhealth services.
Why is this important?
It means the best health benefits for patientsfrom every dollar spent and ensures a sustainablehealthcare system.
The first three years
AusHSI has supported 40 projects. Modellinghas show that implementing recommendationsfrom four of the projects would result in improvedhealth outcomes and up to $160 million in annualsavings for Queensland. There is excitement aboutthe potential results of the remaining 36 projects.
Professor Colleen Nelson
clinical trial to gain insights into the effects of
exercise in prostate cancer patients.
Professor Nelson says working in cancer
research gives her an opportunity to be creative
in problem-solving, indulge her natural curiosity,
collaborate with passionate people from around
the world and progress science in a way that
is already benefitting patients. ‘Prostate cancer
research is such a diverse field. There is always
something new being discovered and different
strategies being employed to tackle the disease.
It never fails to inspire and motivate me when
disciplines come together to collaborate on
solving a common problem.’
Adjunct Professor Alison Mudge