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Psycho-oncology co-operative research group
Research highlights 2008/09
PoCoG is one of Australia’s national
cooperative cancer clinical trials
groups, working to increase collaboration and innovation in psychooncology research.
We aim to improve outcomes for
people affected by cancer by developing and facilitating high quality,
collaborative and clinically relevant
research focussed on optimising
psychosocial and supportive care.
Membership
PoCoG has more than 460 members
from a range of research and health
disciplines across Australia and
internationally.
2008: 334
2009: 461
First Australian Chair in Cancer Quality of Life p3
New Psycho-oncology Outcomes
Database (PoD) p4
PoCoG workshops foster new research p4
Researchers/academics
Research coordinators
and research staff
Current research priorities p6
Program/policy
management
Other
Clinical/health
services
management
Nursing
professionals
Medical
Psychosocial
clinicians
SAC approved research projects
2008: 7
2009: 20
Number of participants
recruited to studies
2008: 302
2009: 1022
In 2009 PoCoG became an official centre of The University
of Sydney. The University has been PoCoG’s home since
its inception in 2005, and we are delighted with this formal
recognition. Our operations and activities will be unchanged,
but there will be some changes to our governance and branding
from early 2010.
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PoCoG Research Highlights 2008-2009
Overview from our Chair
This report highlights the recent achievements of PoCoG, the Psycho-oncology Cooperative Research Group (PoCoG). Over the past four years, we’ve worked hard to
establish the Group to foster high-quality, collaborative and clinically relevant research
aimed at improving psychosocial and supportive care for people affected by cancer.
During this time, our membership has rapidly grown; so too has the range of programs
and resources to foster and support psychosocial and quality of life research.
PoCoG’s core activities and most significant achievements to date include:
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creating formal links with the other national cooperative cancer clinical trials groups
(CTGs) to develop psycho-oncology sub-studies and collaborative research
establishing national priorities for psycho-oncology research
the appointment of the first Cancer Australia Chair in Cancer Quality of Life,
Professor Madeleine King
convening workshops to facilitate development of new research concepts and
studies
developing and conducting studies focussed on identified needs in psychosocial
and quality of life research
developing programs and resources to engage and support early career researchers
in psycho-oncology
the launch of the Psycho-oncology Outcomes Database (PoD), to assist researchers
in finding appropriate measures of quality of life.
Our Chair: a world
leader in psychooncology research
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Professor Phyllis Butow BA (Hons),
PoCoG’s successes are underpinned by our commitment to collaboration and
multidisciplinary approach. Our directions and activities are guided by advisory
committees comprising researchers, health professionals and consumer
representatives with various interests and experiences. On behalf of PoCoG I thank all
the committee members and staff (acknowledged on the back page of this report) for
their contribution to our early achievements.
Dip Ed, MClinPsych, MPH, PhD has
been Chair of PoCoG since its establishment in 2005.
Phyllis is a Professor in the School of
Psychology, Co-Director, Centre for
Medical Psychology and Evidence-
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We look forward to reporting further achievements in our efforts to help improve cancer
outcomes through psycho-oncology research next year.
based Decision Making, the University of Sydney and NHMRC Principal
Research Fellow at the University of
Sydney, and Co-Director of the Sur-
Professor Phyllis Butow
Chair
gical Outcomes Research Centre.
Phyllis has worked for over 20 years
in the area of psycho-oncology and
has developed an international reputation in psycho-oncology research
and in health communication. She is
a world leader in research focussed
on doctor-patient communication
in oncology, and has particular expertise in longitudinal epidemiological studies exploring the impact of
psychosocial factors in disease incidence and outcome.
In 2009 Phyllis received an International Psycho-Oncology Society
award for her outstanding contribu-
Acknowledgements
PoCoG is jointly funded by Cancer
Australia and Cancer Institute
NSW.
Executive Committee
PoCoG’s Executive Committee
oversees our strategic direction
and financial and administrative
management. Our Scientific
Advisory Group monitors the
scientific direction and priorities
of PoCoG. The Quality of Life
Advisory Committee provides
advice on strategic directions for
our Quality of Life Office.
Dr Melanie Price
We wish to thank the committees
and funding bodies for their
support.
Prof. Phyllis Butow (Chair)
Prof. Madeleine King
Dr Janette Vardy, PoCoG SAC Chair
Dr Jane Turner, OZPOS Chair
Dr Jeremy Couper
Mr Graham Glendenning
Ms Sally Hodgkinson
Prof. Brian Kelly
Dr Nicole Rankin
Prof. Kate White
Scientific Advisory Committee
tion to the field of psycho-oncology
Dr Janette Vardy (Chair)
(see p 6).
A/Prof. Elizabeth Eakin (Deputy Chair)
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Focus on quality of life
PoCoG strives to improve the quality of life of people affected by cancer through
research, education and collaboration.
Our Quality of Life Office was established to foster and enhance research focussed
on the health-related quality of life of people affected by cancer. It provides advice
and support to researchers and cancer clinical trials groups about quality of life (QoL)
issues, particularly the measurement, analysis and interpretation of health-related QoL.
The QoL Office team has been developing strong networks and collaborations with
other cancer clinical trials groups (CTGs), both nationally and globally, helping them
develop QoL research protocols and sub-studies. We have provided advice and
support to many investigators and statisticians, and developed many online resources
to support researchers in assessing the health-related quality of life of people affected
by cancer.
We have initiated several ongoing research studies and are collaborating in others with
ANZ CTGs and other QoL researchers internationally. These are aimed at:
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developing a cancer-specific health state classification system for use in economic
analysis of cancer services and therapies
improving quality of life measurement for melanoma patients
calibration of the European Organisation for the Research and Treatment of Cancer
(EORTC) fatigue item pool for computer adaptive testing
field testing a quality of life questionnaire for men with testicular cancer.
The QoL Office also completed a review of patient-reported outcomes for healthrelated QoL, anxiety, depression and distress, with recommendations for choice of
measures, commissioned by the Cancer Institute NSW.
Thanks to our Advisory Group members and staff team who have enthusiastically
driven the establishment of PoCoG’s QoL Office and will ensure we continue to meet
the needs of researchers and health professionals in the future.
First Cancer Australia
Chair in Cancer Quality
of Life
The past year has been an exciting
and highly productive time for our
Quality of Life Office, following
the
appointment
of
Professor
Madeleine King, the first Cancer
Australia Chair in Cancer Quality of
Life. Madeleine brings a wealth of
experience and knowledge to the
Professor Madeleine King
Cancer Australia Chair in Cancer Quality of Life
Director, PoCoG Quality of Life Office
PoCoG team and is instrumental
in building collaborative research
efforts in quality of life research in
the Australian cancer community.
Madeleine holds a Bachelor of
Science (Hons) from The University
of Sydney and a PhD in Medical
Prof. Phyllis Butow, PoCoG Chair
A/Prof. Martin Stockler
Prof. Madeleine King
A/Prof. Rosalie Viney
Dr Melanie Price
Prof. Patsy Yates
Mr Graham Glendenning
Statistics from The University of
Newcastle. Her experience covers a
range of health research disciplines,
Ms Kim Hobbs
Funding Bodies
but her key research interest is
Ms Sally Hodgkinson
Cancer Australia
the measurement, analysis and
Dr Monika Janda
Cancer Institute NSW
A/Prof. Michael Jefford
Clinical Oncological Society of Australia
A/Prof. Bettina Meiser
beyondblue
A/Prof. Martin Stockler
National Health and Medical Research
Council
Prof. Patsy Yates
auDA Foundation
QoL Advisory Group
Prof. Alan Coates
interpretation
of
health-related
quality of life and other patient
reported-outcomes.
Madeleine is a former President of
Cure Cancer Australia
the International Society for Quality
National Breast Cancer Foundation
of Life Research and continues to sit
Prof. Robert Sanson-Fisher
on the Society’s Advisory Council of
A/Prof. Eva Segelov
Past Presidents.
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PoCoG Research Highlights 2008-2009
PoCoG resources
support research
PoCoG has developed a large array of resources and information
to support researchers and health
professionals in developing and doing psycho-oncology research and
forming new research collaborations
and networks.
Our new Psycho-oncology Outcomes Database (PoD) is a searchable online database of validated
psychosocial and quality of life
measures.
PoD contains information about
more than 300 patient-reported
questionnaires measuring outcomes
such as quality of life, supportive
care needs, psychological states
and social support. It will support
and enhance psycho-oncology research in Australia by enabling researchers to find the most appropriate patient-reported measures for
their studies.
PoCoG has created a world map of
psycho-oncology research centres
to help foster new collaborations and
networks among psycho-oncology
researchers. The interactive map,
on the PoCoG website, assists researchers to identify centres and individuals with expertise in particular
areas and identify collaborating centres for studies or for PhD or postdoctoral studies or work experience.
Other web-based resources freely
available to all PoCoG members
include:
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PoCoG members’ index – to
facilitate communications and
networking between members
Members’ forum where members
can discuss issues and ask
questions via email
online seminars – recording and
slides of lectures by international
leaders in psycho-oncology
our quarterly e-newsletter –
providing updates on PoCoG
activities and relevant news
from members and other
organisations
calendar of events
answers to frequently asked
questions about quality of life
research and links to tools and
information
practical advice about involving
consumers in research
links to useful websites.
Fostering new research
PoCoG brings together researchers,
clinicians, health care professionals
and consumers to share ideas and
form new collaborations and networks
to conduct psycho-oncology research.
We foster and support the development
of large-scale, multicentre psychooncology studies that would be difficult
for any one team to mount.
PoCoG’s Scientific Advisory Committee
and other psycho-oncology experts.
In 2010 the groups will conduct pilot
studies and gather data to demonstrate
the clinical relevance of their research
projects and planned interventions
and finalise protocols, with the aim of
submitting applications for NHMRC
funding in 2011.
PoCoG has convened several Concept
Development Workshops to identify
needs in psycho-oncology and
develop research ideas, protocols and
intervention studies to address those
needs.
Screening for distress
A one-day workshop of psychosocial
clinicians was held in November 2008,
to identify research concepts that could
be developed as multicentre studies of
psychosocial interventions for cancer
patients and carers. Four research
topics were considered feasible to
pursue:
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Fear of recurrence in cancer
survivorship
Sleep disturbance
Supporting patients with a poor
prognosis
Head and neck cancers – an
intervention to improve psychosocial
outcomes.
Writing groups were formed to develop
the research concepts, with PoCoG
support and assistance.
At our most recent Concept
Development Workshop in September
2009, the four writing groups developed
their protocols with the assistance of
www.pocog.org.au
The proportion of cancer patients
experiencing undiagnosed distress
is high. There is evidence that
routine screening for distress and
symptoms can improve the quality of
life of people with cancer and their
carers. At our most recent Concept
Development Workshop in September
2009, PoCoG’s Scientific Advisory
Committee members and other invited
experts discussed the possibility of a
nationwide implementation of routine
screening for psychological distress in
patients and carers.
Pilot study grants
In 2009 funding from the COSA
and Cooperative Groups Enabling
Grant enabled us to initiate PoCoG
Pilot Study Grants to support the
development of intervention studies
in psycho-oncology. We received 16
applications from members currently
involved in psycho-oncology research
who plan to develop a psychosocial
intervention trial for submission to the
National Health and Medical Research
Council for funding in 2010 or 2011.
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Linking and supporting researchers and health professionals
One of PoCoG’s aims is to bring
together researchers, clinicians, health
care professionals and consumers
with an interest in psycho-oncology to
foster collaboration and the exchange
of ideas. Our success in linking and
supporting people interested in psychooncology is evinced by our growing
membership, now totalling more than
460 across Australia, New Zealand
and internationally. Our members
include psychologists, psychiatrists,
behavioural scientists, social workers,
nurses, medical oncologists, radiation
oncologists, surgeons and cancer
policy and project officers.
We have developed a range of
programs and services to link and
support our members, to build their
research capacity, and to facilitate
new collaborations and networks to
progress psycho-oncology research.
In November 2009 PoCoG and the
Psycho-oncology Group of COSA
(OZPOS) jointly convened the first
Professional Day for psycho-oncology
professionals. It was an opportunity for
members to present research, discuss
educational and workforce needs and
explore clinical and service delivery
issues within a dedicated psychooncology forum.
The PoCoG website has become an
effective tool for communication with
and between research and health
professionals in psycho-oncology,
both within Australia and across the
world. Our web-based Members’
Forum, launched in October 2008,
enables PoCoG members to exchange
ideas, email a question to all other
participating members, and identify
other members with shared interests
to develop research collaborations,
networks or mentoring relationships.
Other resources available to PoCoG
members are listed in the ‘PoCoG
resources’ item on page 4.
Participants of the PoCoG Concept Development workshop in November 2008
Support for early career researchers
PoCoG supports early career psycho-oncology researchers by providing access to resources (see above) and events such
as our Concept Development Workshops to enable and support their participation in collaborative research. PoCoG also has
developed specific mentoring programs:
ALTG/PoCoG Clinical Research
Fellow
We have established a Research
Fellowship, in collaboration with the
Australasian Lung Trials Group, to
foster psychosocial and supportive care
research in the area of lung cancer. Ms
Erena Wikaire joined the PoCoG team
in this position in April 2009.
Cancer Institute NSW Clinical
Fellow
PoCoG mentored clinical psychologist
Maree Thomas, who investigated the
effectiveness of a mindfulness-based
group intervention in reducing distress
in radiation therapy patients at St
George Hospital’s Cancer Care Centre.
PhD student mentoring
In 2009 clinical psychologist Ming Sze
and psychology graduate Ben Smith
commenced their studies in psychooncology under the supervision of
PoCoG investigators.
Travel Reimbursement Scheme
Our Travel Reimbursement Scheme,
funded by Cancer Australia, supports
the ongoing professional development
of cancer researchers and health
professionals in the discipline of
psycho-oncology by assisting PoCoG
members to attend national or
international conferences, workshops,
seminars or other professional
development activities.
Erena Wikaire and study participant Mrs Lydia
Shandar during a physical activity training session
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PoCoG Research Highlights 2008-2009
Psycho-oncology
research priorities
PoCoG has established national priorities for psycho-oncology
research.
In 2007-2008 we conducted a two
phase project with healthcare and
research professionals working in
the area of psycho-oncology across
Australia to identify psycho-oncology research priorities and needs. The
top three research priorities identified were:
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survivorship
distress identification, referral
and management
issues for carers.
We hope the survey results will direct limited resources towards largescale translational research efforts
on priority areas in current clinical
practice.
Current research
PoCoG has developed and
implemented several studies focussed
on identified areas of need in psychooncology research.
Exploring the needs of cancer patients
from CALD backgrounds
Cancer patients from culturally
and linguistically diverse (CALD)
communities traditionally have been
excluded or under-represented in
clinical trials because of language
barriers.
To address this issue, PoCoG is
coordinating four novel studies.
The ‘Unmet needs study’ is examining
unmet needs, quality of life,
psychological distress and patterns of
care in cancer survivors from Arabic,
Greek and Chinese (Cantonese
and Mandarin) communities. The
‘CALD Clinical study’ is examining
these issues in CALD patients newly
diagnosed with cancer and undergoing
active treatment.
The ‘Interpreters study’ grew from
recognition, during the first phase of the
Unmet needs study, of the important
role of interpreters in oncology
consultations with people of CALD
backgrounds. This qualitative study
of professional interpreters working
in the NSW and Victorian healthcare
systems explored their experiences and
challenges in oncology consultations.
PhD student Ms Ming Sze representing PoCoG
at the Chinese Cultural Day in Ashfield, NSW,
May 2009
Awards and honours
The ‘Prognosis study’ investigated
barriers to effective cross-cultural
communication about prognosis in
people with metastatic cancer from
CALD communities.
To ensure the cultural appropriateness
of these studies we formed a
Community Partners Advisory Board
for each CALD community, comprising
health professionals, religious leaders,
psychologists, social workers and
consumer representatives. Data
analysis is in progress.
Collaborative projects
PoCoG has developed quality of
life studies in partnership with other
national cooperative cancer clinical
trials groups and researchers.
As part of a collaboration with
the Australian and New Zealand
Gynaecological Oncology Group and
the Gynaecologic Cancer Inter-Group,
PoCoG is designing the healthrelated quality of life component of a
study to determine whether palliative
chemotherapy improves symptoms
for women with recurrent ovarian
cancer. This study will determine how
to measure benefit in this context, and
develop a prognostic index to predict
which women will benefit from palliative
chemotherapy.
In collaboration with the Australian
and New Zealand Urogenital and
Prostate Cancer Trials Group
(ANZUP) PoCoG is coordinating a
study of the psychosocial impact of
surviving testicular cancer. Our aim
is to determine the prevalence and
correlates of depression, anxiety and
psychosocial distress among Australian
survivors of testicular cancer. This
information will lead to better design,
focus and timing of multidisciplinary
interventions to improve long-term
psychosocial outcomes.
In 2009 PoCoG Chair Professor
Phyllis Butow was co-recipient of
the prestigious International PsychoOncology Society (IPOS) Bernard
Fox Memorial Award for outstanding contribution to education, research or leadership in the field of
psycho-oncology.
PoCoG Executive Committee member Professor Kate White was appointed the first Academic Chair
in Cancer Nursing for NSW in May
2009. Professor White’s appointment recognises the vital role of specialist nurses in cancer treatment.
Participants of the PoCoG Protocol Development Workshop 2007 at the Vibe Hotel, Rushcutters Bay, Sydney
7
PoCoG GRANTS
Butow, P. (2005-2009). NSW PoCoG
Research Infrastructure Grant:
$401,682, CI NSW.
Butow, P., et al. (2009). Literature
Review on Psychosocial Outcome
Measures: $29,756.25, CI NSW.
King M, et al. (2009-2010). PANZALTTO: Patient preferences substudy
(ANZ): $16,500, ANZBCTG.
Butow, P. (2006-2007). PoCoG
Research Infrastructure Grant:
$540,000, Cancer Australia.
Eisenbruch, M., & Butow, P. (2008).
Understanding Barriers to Effective
Cross-Cultural Communication about
Prognosis of Metastic Breast and
other Cancers: $75,000, Cure Cancer
Australia Foundation.
Olver, I., et al. (2009-2010).
Psychosocial sequelae of surviving
testicular cancer: $190 800, Cancer
Australia and beyondblue.
Butow, P. (2008-2010). PoCoG
Research Infrastructure Grant:
$1,162,365, Cancer Australia.
Butow, P. et al. (2009-2011). PoCoG
Research Infrastructure Grant:
$330,000, CI NSW.
Butow, P., et al. (2009-2011). Unmet
needs of CALD cancer patients:
$600,000, Cancer Australia and
beyondblue.
Butow, P., et al. (2007-2008). Unmet
needs of CALD cancer patients:
$198,378, NHMRC.
Butow, P., et al. (2008-2009). PoCoGEquipping the research community to
assess quality of life in cancer: $19,790,
auDA.
Eisenbruch, M., et al. (2006-2007).
Barriers to Effective Cross-Cultural
Communication about Prognosis of
Metastic Breast and other Cancers:
$210,000, NBCF.
Friedlander M, et al. (2009-2011).
Does Palliative Chemotherapy Improve
Symptoms in Women with Recurrent
Ovarian Cancer?: $502,250, NHMRC.
King, M. et al. (2009). Development of
cancer-specific multi-attribute health
states from the QLQ-C30 for use in
economic evaluation: $47,814, CI NSW.
PoCoG (2007-2011). The Cancer
Australia Chair in Cancer Quality of Life:
$634,496.50, Cancer Australia.
PoCoG (2007-2008). COSA Enabling
Grant: $36,000, COSA.
PoCoG. (2009-2010). COSA Enabling
Grant: $36,000, COSA.
Butow, P., et al. (2009-2010). Population
based survey exploring anxiety,
depression and unmet needs of CALD
cancer patients: $25,000. beyondblue
Wikaire, E., et al. (2009-2010). Caring
for thoracic cancer caregivers: $4,780.
ALTG.
Publications and presentations
Conference oral presentations and
posters
Butow, P., et al (2008). Conducting
research with culturally and linguistically
diverse cancer patients: Methodological
issues, COSA ASM. Sydney.
Butow, P. (2008). Cultural issues in
information exchange between health
professionals and patients, COSA ASM.
Sydney.
Butow, P., et al. (2008). Unmet needs in
Chinese, Greek and Arabic Speaking
Cancer Patients in Australia. IPOS 10th
World Congress of Psycho-Oncology.
Madrid, Spain.
Butow, P, et al. (2008). Chinese, Greek
and Arabic speaking cancer patients in
Australia: Unmet needs and healthcare
challenges, Sydney Cancer Conference.
The University of Sydney.
Butow, P., et al. (2008). Barriers to
research with cancer patients from
culturally and linguistically diverse
(CALD) communities in Australia.
IPOS 10th World Congress of PsychoOncology. Madrid, Spain.
Dzidowska, M., et al. (2008). Views
of Oncology Health Professionals on
Priority Psycho-Oncology Research
Questions, Sydney Cancer Conference.
The University of Sydney and COSA
ASM, Sydney.
Luckett, T., et al. (2008). Psychooncology Co-operative Research
Group (PoCoG): A new ‘Quality of Life
Office’ to support Australian cancer
clinical research. 13th National Health
Outcomes Conference. Canberra.
Winstanley, J., et al. (2009). Improving
the measurement of quality of life (QOL)
in an Australian melanoma population.
7th World Congress on Melanoma.
Vienna, Austria.
Sze, M., et al. (2008). Barriers to
accessing psychosocial care amongst
CALD cancer patients, Sydney Cancer
Conference. The University of Sydney.
Journal Publications
Sze, M., et al. (2008). Help and
hindrance to effective doctor-patient
communication, COSA ASM. Sydney.
Aldridge, L., et al. (2009). Unmet needs
in Chinese, Greek, Arabic and Englishspeaking cancer patients in New South
Wales, IPOS 11th World Congress of
Psycho-Oncology. Vienna, Austria.
Butow, P., et al. (2009). Oncology
consultations with patients from
culturally and linguistically diverse
(CALD) backgrounds: The interpreter
perspective. IPOS 11th World Congress
of Psycho-Oncology. Vienna, Austria.
Schofield, P., et al. (2009). Oncology
consultations with patients from
culturally and linguistically diverse
(CALD) backgrounds: The interpreter
perspective, MASCC/ISO 2009
International Symposium Supportive
Care in Cancer. Rome, Italy.
Luckett, T., et al. (2008). Psychosocial issues in long term survivors
of testicular cancer: Directions for
future research. Asia-Pacific Journal of
Clinical Oncology, 125-131.
Ewing, J., et al. (2009). Validation of
modified forms of the PedsQL generic
core scales and cancer module scales
for adolescents and young adults (AYA)
with cancer or a blood disorder. Quality
of Life Research, 1-14.
Smith, DP., et al. (Asccepted 30/9/09).
Quality of life three years after
treatment for localised prostate cancer:
A population-based study. British
Medical Journal.
Butow P, et al. (Accepted 15/9/09). A
review of adherence-related issues in
adolescents and young adults with
cancer. Journal of Clinical Oncology.
Psycho-oncology
Outcomes
Database
Do you need a psychosocial or quality of life measure for your next study?
PoCoG’s new Psycho-oncology Outcomes Database (PoD) is a searchable online
database of validated psychosocial and quality of life measures.
PoD contains information about more than 300 patient-reported
questionnaires measuring outcomes such as quality of life,
supportive care needs, psychological states and social
support.
PoD is searchable by questionnaire
type, patient characteristics, tumour
group, treatment type and other
domains to help you find the most
appropriate measure for your study.
Access to PoD is free via the PoCoG
members’ website:
www.pocog.org.au/pod
Dr Melanie Price
Executive director
Ms Monika Dzidowska
Executive officer
Dr Tim Luckett
Project manager
Ms Rebecca Mercieca
Project assistant
Ms Sharon Ceiley
Administrative assistant
Contact Us
PoCoG Mailing Address and Office Location:
School of Psychology
A18 Brennan MacCallum Building
The University of Sydney NSW 2006
Australia
General Enquiries
Phone: +61 2 9036 5002
Fax: +61 2 9036 5292
E-mail: [email protected]
www.pocog.org.au
Publication number: EO-AR-091101
Executive office
staff members: