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Current Research Projects

Health professional-patient communication


Development, piloting and revision of a communication tool to assist health professionals to communicate the diagnosis of ductal carcinoma in-situ (DCIS) to women

The National Breast and Ovarian Cancer Centre (NBOCC) has developed a communication aid for clinicians to assist in communicating the diagnosis and treatment of DCIS. The tool is based on guidelines recently developed by NBOCC by CeMPED. To ensure its applicability and acceptability a pilot study is underway to evaluate the draft tool. The pilot study will involve clinicians using the communication tool in two consecutive consultations with women diagnosed with DCIS then completing a short survey. The views of women who have been diagnosed with DCIS will also be sought.

Principal Investigator: Prof. Phyllis Butow
Research Coordinator: Jillian MacDonald
Funding: National Breast and Ovarian Cancer Centre



Discussing prognosis & end-of-life issues in palliative care; current practice & development of an evidence based training program

We have conducted focus groups with palliative care patients, and their carers, and health professionals working in palliative care, and obtained their views on ideal communication of prognosis. We have analysed audio-taped consultations to see how these issues are currently discussed. We have conducted a systematic review of the literature in this area and developed evidence-based guidelines for communicating prognosis in the palliative care setting which have been reviewed by an international panel. A communication skills workshop focusing on this issue has been developed and will soon be piloted.

Principal Investigator: Dr Josephine Clayton
Research Coordinator: Dr Josephine Clayton
Funding: NHMRC Palliative Care Grant, Cancer Institute NSW Clinical Research Fellowship



Communication about cancer clinical trials and treatment options: A randomised trial of a consultation skills training package

During the past decade there has been a growing expectation that patients participate in decisions about their medical care and give informed consent not only to clinical trials, but also to standard treatments. However, many doctors and patients experience difficulties during these discussions, leading to questionable informed consent. This international randomised control trial evaluates a training program designed to assist doctors to communicate in an ethical and effective way about treatment options and medical research in a breast cancer population. The project is being conducted in collaboration with the International Breast Cancer Study Group based in Switzerland. The current study will be one of the first in the world to rigorously evaluate the impact of consultation-skills training on both doctor behaviour and patient and doctor outcomes.

Principal Investigator: Prof Phyllis Butow
Research Coordinator: Dr Ilona Juraskova
Funding: National Breast Cancer Foundation



Health care communication in general and specialist practice in Australia

Good evidence-based practice includes both discussion of clinical evidence, and elicitation and discussion of consumers’ preferences for different management options. Yet many consumers still do not receive care that should be provided on the basis of best evidence, and which is consistent with their preferences. Effective communication about health problems and treatment options is very important in achieving high quality health care for Australian patients.
This study will develop and validate a new coding scheme to estimate the frequency and nature of communication by Australian doctors with their patients. The aim is to assess patient/doctor communication in general and specialist practice and will include an opportunity for participating doctors to receive confidential feedback about their communication skills . Participating clinicians will be visited by two Standardised Patients over a 4-6 month period. A Standardised Patient is an actor trained to portray a consistent or standardised patient in terms of presenting clinical problem and individual factors (including medical history, socio-demographic characteristics, social and family factors, personality and so on). In other words they are fake patients who portray a pre-specified role with high reliability over time. We are using Standardised Patients so that our measures of communication will be consistent across doctors and this will add to the validity of our study. A feasibility study of this project methodology is in progress.

Principal Investigator: A/Prof Alex Barratt
Research Coordinator: Dr Heather Shepherd
Funding: Foundation for Informed Medical Decision Making



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Supporting decision-making


Our consumer-focussed projects aim to comply with International Standards for Patient Decision Aids (IPDAS). Our group members participated in the international collaboration that developed these standards. Our screening decision aids aim to be consistent with our article in the British Medical Journal (BMJ) in 2004 and our paper in the Journal of the American Medical Association (JAMA) in 1999.


International Patient Decision Aids Standards (IPDAS)

Alex Barratt is a member of the steering committee for the development of international standards for decision aid development. Other contributors include Kirsten McCaffery, Phyllis Butow and Lyndal Trevena. The project is coordinated by the Ottawa Health Research Group Canada, led by Annette O’Connor. Further information about this project is available online at www.ipdas.ohri.ca/.

Principal Investigator: Prof Annette O’Connor and Prof Glyn Elwyn
CeMPED Chief Investigator: A/Prof Alex Barratt



Interventions to assist decision-making about screening and prevention


Australian Screening Mammography Decision Aid Trial Online (Mammography Decision Aid for women aged 40 years)

This decision aid aims to help women around 40 years of age make an informed choice about whether to begin screening for breast cancer or wait until later (50 years). The decision aid is available on on-line at www.mammogram.med.usyd.edu.au. It has been evaluated in a randomized controlled trial conducted on-line and is now in publication process. The decision aid increased knowledge, and decreased the proportion of women who were undecided. The trial demonstrated the usefulness and feasibility of an on-line decision aid to help women make this decision.

Principal Investigator:A/Prof Alex Barratt
Research Coordinator: Erin Mathieu
Funding: NHMRC



Online Faecal Occult Blood Test (FOBT) screening decision aid & implementation study

An online FOBT decision aid is available and pilot data has been collected. As part of a new ‘Oxford-Sydney Collaboration for evidence-based cancer prevention activities in general practice’ this project has received funding from the NSW Cancer Institute for further development towards implementation and evaluation in both countries. UK and Australian versions have been developed and the Australian version has been evaluated by a range of GPs, consumers and helpline staff from the Cancer Council NSW. It is hoped that a similar evaluation of the UK version can take place in 2008-09.

Principal Investigator: Dr Lyndal Trevena
Research Coordinator: Dr Lyndal Trevena
Funding: NSW Cancer Institute



Low Literacy Faecal Occult Blood Test (FOBT) Screening Decision Aid

The use of decision aid tools to support informed choice and decision making in the context of cancer screening has proliferated. There are, however, concerns that decision aid tools may not be accessible for people with limited education and literacy skills. This study aims to develop and evaluate a ‘literacy sensitive’ decision aid tool for adults aged 55-64 eligible for colorectal cancer screening acceptable for adults with low or high levels of education and literacy. The decision aid development was conducted in 2005. Evaluation of the decision aid through a randomized controlled trial is underway.

Principal Investigator: Dr Kirsten McCaffery
Research Coordinator: Sian Smith
Funding: NHMRC



Testing graphical risk presentation format among adults with low literacy

This is a sub study of the above listed project. The aim is to determine optimal graphic format to present risk information to adults with low literacy and education. 120 adults have been recruited from adult education classes in NSW for testing of different graph formats. The results of this study will inform the design of the decision aid described above.

Principal Investigator: Dr Kirsten McCaffery
Research Coordinator: Dr Kirsten McCaffery
Funding: NHMRC



HPV testing Decision Aid for women with Minor Atypia on Pap smear (The IMAP Study): Assessment of Psychosocial and QOL Outcomes

This study will compare the psychosocial outcomes of different management strategies for women with a mildly abnormal Pap smear: (a) usual care (repeat Pap smear), (b) HPV testing, a new management proposed for this group, and (c) the choice of either management using a decision aid to support women to make their preferred choice. The study will assess psychosocial outcomes over 12 months.

Principal Investigator: Dr Kirsten McCaffery
Research Coordinator: Dr Kirsten McCaffery
Funding: NHMRC



Incorporating QOL data into informed decision making for women with Minor Atypia on Pap smear

The QOL/utility data (chained standard gamble) will collected over the same time period and will be used in conjunction with the psychosocial data to develop a decision analytic model to promote informed decision making for policy makers and individual women.

Principal Investigator: Dr Kirsten Howard
Research Coordinator: Dr Kirsten Howard
Funding: NHMRC



Cervical Cancer Prevention Toolkit

This project is funded by the Cancer Council NSW and involves the development and evaluation of a website for young women who are considering a pap smear. It will include a randomised trial in general practice.

Principal Investigator: Dr Lyndal Trevena
Research Coordinator: Monika Wadolowski
Funding: NSW Cancer Council



Cluster-randomised trial of a complex intervention for addressing parental concerns about MMR vaccination

This international collaboration with Leeds University uses our MMR decision aid within a UK-based trial.

Principal Investigator: Dr Catherine Jackson (UK)
CeMPED Chief Investigator: Dr Lyndal Trevena
Research Coordinator: Dr Catherine Jackson (UK)
Funding: Medical Research Council



An interactive decision tool for preventive health-check activities in general practice

This is a three-year project commencing in 2006 and funded by the NSW Cancer Council to develop a ‘meta-decision aid’ for prioritising preventive health activities in general practice. It seeks to use the RACGP ‘Red Book’ guidelines for this purpose and includes a randomised controlled trial and qualitative exploration of consultation processes. This project is also part of the Oxford-Sydney Collaboration for evidence-based cancer prevention activities in general practice’ with some funding from NSW Cancer Institute.

Principal Investigator: Dr Lyndal Trevena
Research Coordinator: Dr Siranda Torvaldsen
Funding: NSW Cancer Council



Implementation of HPV vaccination in general practice

Semi-structured interviews were conducted with key stakeholders in the roll-out of the HPV vaccination catch-up program for young Australian women in 2007.

Principal Investigator: Dr Catherine Jackson (UK)
CemPED Chief Investigator: Dr Lyndal Trevena
Research Coordinator: Dr Julie Leask
Funding: NCIRS and University of Sydney Visiting Scholar Bursary Scheme



Strategies to improve informed consent: a RCT for colonoscopy

Colonoscopy is a medical procedure enabling the doctor to take a detailed look at a patient¹s bowel. It is performed frequently in Australia and will increase as the population ages and screening becomes more commonplace. This study will document how consent is obtained in standard practice, the views of patients, health professionals, solicitors and representatives of ethics committees about how much information an individual should understand to allow them to make an informed decision, and their advice about how information provision could be improved, The information obtained will be used to develop a set of criteria or principles for informed consent. The information collected in this study will guide the development of a computer-based tool designed to take patients through the information about colonoscopy and check their understanding before they consent to have the procedure

Principal Investigator: Prof Phyllis Butow
Research Coordinator: Haryana Dhillon
Funding: Cancer Institute NSW, ANZAC Research Institute, NHMRC PhD Scholarship



Interventions to assist decision-making about treatment options


A decision aid for asymptomatic women with ovarian cancer with rising CA-125 following first line treatment

This is a collaborative study being conducted in the Department of Gynae-Oncology at the Royal Prince Alfred Hospital. Following a complete clinical response to initial therapy, a rise of CA-125 is thought to be the first sign of cancer relapse in about 70% of women. Many patients remain asymptomatic for extended periods of time despite exhibiting very high CA-125 levels. The knowledge that someone has rising CA-125 levels, yet remains clinically asymptomatic presents a major management dilemma for doctors and patients, as there is no clear evidence that beginning a second-line treatment (of either chemotherapy or Tamoxifen) on the basis on raising CA-125 levels alone is of any survival or quality of life benefit. This is further compounded by the possible toxicity from such a treatment when patients would otherwise be asymptomatic. For the woman, the news of rising CA-125 levels is known to trigger feelings of panic, profound fear and devastation that the cancer has reoccurred. It is at this time that a woman is asked to make a decision concerning her second-line treatment. This project aims to develop and evaluate the usefulness of, a decision aid (DA) in reducing decisional conflict and psychological distress whilst increasing knowledge about treatment options and satisfaction with the decision-making process in ovarian cancer patients considering second-line treatment following an asymptomatic increase of their CA-125 tumour marker. The DA may also improve clinicians’ satisfaction with the decision-making process.

Principal Investigator: Prof Jonathan Carter
CeMPED Chief Investigator: Dr Ilona Juraskova
Research Coordinator: Caroline Anderson / Christina Briegleb
Funding: Sydney Cancer Centre Foundation Research Grant / Cancer Institute NSW Research Fellowship



Development and piloting of a Decision Aid for women who have platinum resistant or platinum refractory ovarian cancer deciding whether or not to have chemotherapy

Ovarian cancer is the leading cause of death in women with gynaecological malignancies in the Western World and an important cause of cancer related deaths in women. A major contributor to effective coping with illness is information and involvement in decision-making. There are only a handful of studies exploring ovarian cancer patients’ information needs and views on decision-making. A Decision Aid for women with platinum resistant or platinum refractory ovarian cancer deciding whether or not to have chemotherapy will be developed and piloted. This study will provide evidence on the DA’s acceptability, perceived utility, cost and likely usage in routine clinical practice.

Principal Investigator: Dr Ilona Juraskova
Research Coordinator: Caroline Anderson / Christina Briegleb
Funding: Cancer Institute NSW Fellowship project



Improving communication about rehabilitation options following pelvic radiation treatment with women with cancer: The development and evaluation of an information booklet

There is a lack of resources for women facing recovery from pelvic therapeutic radiation for gynaecological, colorectal and bladder cancer. Despite recognition of the importance to communicate about radiation side effects and subsequent sexual recovery, these sensitive yet important areas of care are often not well addressed in clinical practice, as health professionals and patients find them difficult to discuss. A review of Australian practices indicates that health professionals are inconsistent in advocating the recommended use of dilators for post-radiation rehabilitation and very few provide any additional written information about dilators’ use. This project aims to develop and evaluate the effectiveness of providing women a an information booklet to increase their knowledge about rehabilitation options; improving informed choice; and increasing use and compliance with recommended rehabilitation alternatives without causing any additional psychological distress.

Principal Investigator: Dr Ilona Juraskova
Research Coordinator: Fran Lubotzky
Funding: Unfunded PhD project



A Decision Aid for the management of pain in labour and childbirth

This decision aid will help women who are approaching the birth of their first baby make informed decisions about the analgesic options during labour. It will approach pain management in a positive and flexible way, acknowledging the unpredictability of events around childbirth. The trial has been completed and analysis is underway. An article is available about the trial protocol.

Principal Investigator: Dr Christine Roberts
CeMPED Chief Investigator: Dr Lyndal Trevena / Dr Kirsten McCaffery
Research Coordinator: Camille Raynes-Greenow
Funding: NHMRC



Improving informed consent: A randomised controlled trial of a decision aid for women invited to participate in IBIS-II

This study aims to evaluate the effectiveness of a novel intervention within a clinical trial setting, a decision aid (DA), to assist women in reaching an informed decision about participation in a breast cancer prevention trial (IBIS-II). The IBIS-II clinical trial evaluates the role of anastrozole (hormonal treatment) in the management of post-menopausal women who are at increased risk of breast cancer. Women receiving the DA are expected to have a better understanding of treatment options and clinical trials, reduced decisional conflict, enhanced achievement of information needs, greater satisfaction with care and no greater anxiety. The decision aid may also improve recruiter satisfaction with the consent process; and prove a successful strategy for reducing drop-out from clinical trials. The current study has the potential to transform the process of gaining informed consent in large multi-centre trials.

Principal Investigator: Prof Butow/Dr Juraskova
Research Coordinator: Ben Smith
Funding: Susan G KOMEN for the Cure Foundation (USA); National Breast Cancer Foundation



Enhancing informed consent: evaluation of a question prompt list in cancer clinical trials

Randomised clinical trials are the gold standard for treatment evaluation, yet trivial proportions of patients enter clinical trials in many institutions that promote clinical trial participation. Even when patients agree to participate in a clinical trial, they frequently do not understand the rationale for the trial. Patients who actively participate in medical decisions by asking questions are able to change the focus of discussion and control the amount of information provided. We have prepared a question prompt list for patients to facilitate their participation in clinical trial consent discussions. This project aims to investigate the effects of promoting question asking when cancer patients are asked to consider entering a randomised clinical trial. This simple intervention may help patients participate more fully in discussions about clinical trial enrolment, and lower their psychological distress.

Principal Investigator: Prof Martin Tattersall
Research Coordinator: Rhonda Devine
Funding: Cancer Council NSW, Cancer Council SA, Cancer Council Victoria



Australian Cancer Trials On-line

This project will build and evaluate a website, Australian Cancer Trials On-line which will enable people affected by cancer to quickly and easily search for patients cancer clinical trials which are currently open and for which they may be eligible anywhere in Australia. The website will contain up-to-date information about currently open cancer clinical trials so that consumers can search for trials about specific cancer types, cancer stages and cancer treatments. Cancer consumers have been advocating for such a website for some years and this projects enjoys strong professional and consumer organization support. Use of the website will be evaluated in a cluster randomized in NSW and Victoria. The project is a collaboration between CeMPED, the Australian and New Zealand Clinical Trials Registry and Cancer Australia.

Principal Investigator: A/Prof Alex Barratt
Research Coordinator: Dr Rachel Dear
Funding: NHMRC



Supporting evidence-based practice


Evidence-based practice in nursing

This project seeks to define and measure evidence-based nursing practice in Australia. It the PhD project of Kat Leung.

Principal Investigator: Kat Leung (PhD candidate)
CeMPED Chief Investigator: Dr Lyndal Trevena
Research Coordinator: Kat Leung
Funding: None



Quality & Evidence in General Practice

This study is a collaborative one between Australia and the UK which explores through in-depth GP interviews in both countries, the nature and experience of evidence-based practice and quality of care.

Principal Investigator: Prof Vikki Entwistle
CeMPED Chief Investigator: A/Prof Alex Barratt
Research Coordinator: Prof Vikki Entwistle
Funding: University of Sydney Visiting Scholar Scheme and EastRen Research Bursary



Rheumatoid Arthritis Clinical Practice Guidelines

Dr Trevena is a member of the working group for Royal Australian College of General Practitioners (RACGP) to develop new clinical practice guidelines for the diagnosis and early treatment of rheumatoid arthritis. For more information about this project please contact Lyndal Trevena.

Principal Investigator: Dr Lyn March
CeMPED Chief Investigator: Dr Lyndal Trevena
Research Coordinator: RACGP
Funding: Department of Health & Ageing



Acute Whiplash Guidelines

The Motor Accident Authority of NSW has funded an update and review of the evidence for managing Acute Whiplash Disorder. The new guidelines were completed in 2006 & we are now completing a study which evaluates the implementation of the guidelines in general practice, physiotherapy and third party insurers.

Principal Investigator: Dr Trudy Rebbeck
CeMPED Chief Investigator: Dr Lyndal Trevena
Research Coordinator: Placid Paul
Funding: Motor Accident Authority of NSW



National Indicators for Diabetes Education in Australia

This project is being managed by the Australian Health Policy Institute with membership on its advisory committee by Lyndal Trevena. It aims to establish a national framework of outcomes and indicators for diabetes education.

Principal Investigator: A/Prof Ruth Coliagiuri
CeMPED Chief Investigator: Dr Lyndal Trevena
Research Coordinator: Cecille Eigenmann
Funding: Department of Health & Ageing



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Cultural aspects of cancer care


Communicating prognosis to different cultural groups

This study will compare communication of a poor prognosis within the first and second oncology consultations to a) ethnic groups (the Chinese and Greek) living in a multi-cultural society (Australia) and b) long-term Anglo-Saxon residents of that country, by audio-taping, transcribing and coding those consultations. This will allow identification of current practice in dealing with cultural disparities. We secondly intend to elicit the experiences of the patients and families who attend these consultations, and to obtain the views of these patients and their families, and of opinion leaders and medical professionals from their communities, regarding ideal communication of a poor prognosis. This will allow an exploration of the similarities and differences between the views of these various sources, a comparison between actual and preferred practice, and the development of guidelines based on the views of the participants themselves.

Principal Investigator: Prof Phyllis Butow
Research Coordinator: Ming Sze
Funding: National Breast Cancer Foundation and Cure Cancer Australia



Indigenous grants

Cancer is the second biggest killer of Indigenous Australians: for some cancers the mortality rate is more than 3 times higher in Indigenous people and overall it is 60% higher. While differences in stage at diagnosis and the type and duration of care received by Indigenous people may contribute to the higher mortality, this has not been studied in detail. The aims of this project are: to determine whether Indigenous people are being diagnosed with cancer at later stages; to describe the barriers to Indigenous people being diagnosed earlier and accessing cancer care; to describe the care that Indigenous people with cancer are currently receiving; and to compare their level and types of care with that received by non-Indigenous people. We are conducting four studies to answer these questions. Firstly we are conducting interviews with Indigenous people diagnosed with cancer and Indigenous health workers who look after people with cancer to find out about their perceptions and experiences of Indigenous people dealing with cancer. We will analyse a data set containing records from the NSW Central Cancer Registry and hospital admission records for people living in NSW. Treatments for cancer for Indigenous and non-Indigenous people will be compared. This analysis will be complemented by an examination of records at Aboriginal Medical Services to obtain information on other treatments such as chemotherapy and radiotherapy and referrals to specialists. We will also conduct a population-based patterns of care study where questionnaires seeking information about the diagnostic tests performed and types of treatment given will be sent to doctors who have treated Indigenous people with cancer. In addition, information will be obtained from Indigenous people with newly diagnosed cancer about the clinical pathway that led to the diagnosis.

Principal Investigator: A/Prof Di O’Connell (CCNSW)
CeMPED Chief Investigator: Prof Phyllis Butow
Research Coordinator: A/Prof Di O’Connell
Funding: NHMRC Health Services Research Grant



Psychological morbidity, unmet needs and patterns of care in culturally and linguistically diverse cancer patients in Australia.

The aims of this study are to:
1) Identify unique and shared areas of unmet need in Chinese (Cantonese and Mandarin), Arabic, Greek and English speaking cancer patients
2) Develop and pilot culturally appropriate measures of unmet needs in cancer patients and their carers from each of the 3 targeted culturally and linguistically diverse (CALD) communities
3) Establish the prevalence and predictors of anxiety, depression and unmet needs, and document quality of life and patterns of care, in cancer patients and their carers from these CALD communities across Australia, providing the first national estimates of these.
4) Characterise the psychometric properties of the translated and culturally-adapted versions of the outcome measures, including factor structure and item function, to augment and inform the valid interpretation of the prevalence and risk factor estimates
PHASE 1. QUALITATIVE PHASE. A total number of 91 participants (Greek n=22, Chinese n=49, and Arabic n=20), participated in focus groups and structured interviews designed to explore areas of unmet need and culture-specific issues in cancer care.
PHASE 2. NATIONAL REGISTRY STUDY. A population-based national sample recruited through Australian Cancer Registries will be surveyed to obtain data on levels of anxiety, depression and unmet needs, and to document quality of life and patterns of care, in Greek, Chinese, Arabic and English speaking cancer patients. All measures not already available in translation have been translated (into Arabic, Chinese and Greek) and back-translated by translators accredited with the National Accreditation Authority for Translators and Interpreters (NAATI). Culturally specific areas of unmet need identified in Phase I have been incorporated into the questionnaire which has been pilot-tested with a sample of NSW patients who took part in Phase I of the study. Ethics approval has been obtained from the NSW, Western Australia, Victorian and Queensland Cancer Registries. Recruitment is planned to commence in September 2008.

Principal Investigator: Prof Phyllis Butow
Research Coordinator: A/Prof Liz Lobb / Lynley Aldrige
Funding: NH&MRC Project grant



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Psychosocial predictors of the development and outcome of cancer


The role of psychosocial factors in developing cancer in women from high risk breast cancer families

This is a 10 year cohort study of 2,500 women currently unaffected by cancer who are participating in the Kathleen Cuningham Consortium for Research into Familial Breast Cancer (kConFab). Participants complete questionnaires and a telephone interview targeting a history of stressful life events at three yearly intervals. This is the largest and best designed study exploring this question internationally to date. We aim to:
i) Prospectively examine the role of life event stress, social support, psychological distress (anxiety, depression and medically-unexplained fatigue) and personality characteristics (optimism, anti-emotionality and controlled anger) in the development of primary breast cancer;
ii) Describe unaffected women’s uptake of cancer screening and prophylactic surgery;
iii) Identify predictors of the long term psychological outcomes of prophylactic surgery (e.g. body image, sexuality, breast cancer anxiety and subjective cancer risk estimates) and documents the ongoing impact
iv) Explore the role of 5-HTT (a serotonin transporter) as a moderator of the effect of stressful life events on depression.

Principal Investigator: Prof Phyllis Butow / Dr Melanie Price
Research Coordinator: Dr Deepa Chauhan
Funding: NHMRC



Psychosocial predictors of outcome, unmet needs and quality of life in women with ovarian cancer and their partners

This study is conducted in collaboration with the Australian Ovarian Cancer Study (AOCS). AOCS has recruited approximately 1,500 new primary epithelial ovarian cancer patients from major treatment centres in Australia during 2002-2006, collecting data on demographic and disease prognostic factors that can be shared with the Psychosocial Study. The current study aims to: i) Determine levels of psychological distress, social support, coping style (optimism, minimisation, helpless/hopelessness), unmet needs and quality of life in ovarian cancer patients and their partners/primary carers, measured at 3-6 monthly intervals for 2 years;; ii) Examine the interaction between patient and partner psychosocial variables; iii) Prospectively investigate the role of psychological distress, social support, coping style and unmet needs in determining the outcome of ovarian cancer, in terms of a) quality of life and b) recurrence and c) survival. Ultimately, the aim is to develop interventions targeting the needs of ovarian cancer patients and their partners/carers.

Principal Investigator: Prof Phyllis Butow / Dr Melanie Price
Research Coordinator: Dr Melanie Price
Funding: Multi-state Cancer Research Grant



Predicting bereavement outcomes in caregivers of women with ovarian cancer

Recent evidence suggests that caregivers are at significantly greater risk of getting sick or dying after the death of their spouse or family member. This may be especially true for caregivers who are experiencing a difficult and prolonged bereavement, with some evidence to suggest that those experiencing complicated grief have an increased risk of poorer long term physical and mental health outcomes. This prospective study follows up carers participating in the AOCS Quality of Life study once the woman has died, investigating pre-bereavement and end of life variables in the longer term. The aims of the study include: i) Determine the prevalence of complicated grief and establish the physical and psychological impact of bereavement in caregivers; ii) Evaluate caregivers’ access to and utilisation of palliative care services; iii) Prospectively investigate the role of pre-bereavement, circumstances surrounding the end of life, and grief, in determining the physical and psychological health outcomes; and
iv) Qualitatively explore the caregivers’ concept of ‘a good death’ and ‘a good bereavement’ and the determinants of a good bereavement. The results of this study have the potential to assist early identification of those at risk of poorer health outcomes, and provide evidence for the design of targeted interventions that may impact directly on service provision and health costs.

Principal Investigator: Dr Melanie Price
Research Coordinator: Dr Melanie Price
Funding: University of Sydney Cancer Research Fund



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Psychological adjustment to illness and improving quality of life


Supporting the leaders of cancer support groups

This is a two-part project funded by an Australian Research Council Linkage grant, conducted in conjunction with The Cancer Council, New South Wales, The University of Western Sydney and Department of Gynaecological Oncology, Westmead Hospital.
The first part of this project involved a national survey assessing the challenges, rewards and support and training needs, and psychological well-being of cancer support group leaders. Three hundred leaders from completed the national survey, corresponding to a response rate of 66%. The results of the national survey are in the process of being published in peer-reviewed journals.
The most strongly endorsed support and training included: feedback from group members, access to a website specifically developed for cancer support group leaders and the provision of a leaders’ manual with specific resources and strategies on how to run a group and address difficult group scenarios.
The second component of the project involves a randomised controlled trial which will commence recruitment of an anticipated 60 leaders from NSW in July 2007. The intervention phase of the study will begin in January 2008, evaluating a minimal (exposure to a website/on-line discussion forum) and intensive (exposure to the website/online discussion forum + use of DVD/interactive manual + leadership training) intervention arm. The development of the interventions is currently underway.

Principal Investigator: Prof Phyllis Butow
Research Coordinator: Rachel Zordan
Funding: ARC Linkage Grant with The Cancer Council NSW



Unmet needs of young gynaecological cancer patients

Literature focusing on the unmet psychosocial needs of cancer patients suggests that younger cancer patients are more likely to report higher levels of unmet needs compared to older patients and female cancer patients are more likely to report elevated needs compared to male patients. The small number of existing studies in this area suggest that patients and survivors experience unique physical and psychosocial concerns and needs related to body image; forced menopause; problems with fertility sexual functioning; and fear of cancer recurrence. Furthermore, the type of unmet needs reported is not equally prevalent across the cancer trajectory. Most research in this area has been conducted amongst populations of older post-menopausal women and therefore, the specific needs of younger women may be overlooked in clinical practice. The primary aims of this project are: i) to qualitatively explore and identify the needs of young gynaecological cancer patients and survivors (Phase 1); and ii) to develop and evaluate a Young Women with Gynaecological Cancer Module of the Supportive Care Needs Survey (SCNS) to assess the specific needs of these women (Phase 2).

Principal Investigator: Prof Phyllis Butow / Dr Ilona Juraskova
Research Coordinator: Anna-Lena Lopez
Funding: unfunded PhD project



Improving the patient journey: randomized controlled trial of centralized ‘remote access’ cancer care co-ordination to improve processes and outcomes of care.

Care coordination is crucial in order to optimise patients’ experiences of their care. It is also essential that specialised clinical and support services are available for all patients, including those who live in regional and remote areas. In this study we will assess the effectiveness of a centralised telephone-based ‘remote access’ cancer care coordination service, to determine if it improves care coordination and patient outcomes in the six months following colorectal cancer surgery. A sample of hospitals throughout NSW, including those in regional and rural areas, will be recruited. Over a period of 18 months, all adult patients who have surgery for a newly diagnosed colorectal cancer at these hospitals will be invited to participate. Patients will be randomly allocated into the ‘intervention’ group, who will receive the centralised ‘remote access’ telephone-based cancer care coordination service, or the ‘control’ group, who will receive usual care.
A pilot study of this has intervention has been completed and other studies are currently underway that will contribute to the measures of care coordination adopted in the multi-centre trial. In 2008 hospitals will be invited to participate in the multi-centre trial www.health.usyd.edu.au/source/research/connect/index.php


Principal Investigator: A/Prof Jane Young
CeMPED Chief Investigator: Prof Phyllis Butow
Research Coordinator: Rebecca Dennis
PhD Candidate: James Harrison
Funding: Cancer Institute NSW Health Services Research Program Grant



Expectancies and health outcomes: Exploring the characteristics of the placebo effect within medical settings.

Aims: To investigate whether warning participants about side effects leads to more side effects
The general aim of this project is to further elucidate the characteristics of the placebo effect. Typically, researchers investigating the placebo effect have focused on beneficial effects while overlooking the possibility of adverse placebo effects. The primary aim of this project, therefore, is to determine whether the placebo effect contributes to treatment side effects, and if so, how this might be reduced. A series of studies using a sleep model have explored whether warning participants about side effects leads to more side effects. A 2nd series of studies are being conducted exploring side effects of chemotherapy. In collaboration with US researchers, we have analysed data set from a large US trial investigating the efficacy of three antiemetic regimens in first time chemotherapy patients to investigate the influence of expectancy and chemotherapy related nausea. This involved an analysis of the contribution of expectancy to post-chemotherapy nausea, the impact of nausea on quality of life, and whether there is a relationship between expectancy and quality of life before treatment. We are now collecting data in Australia of cancer patients’ expectancies and experiences of chemotherapy side effects as well as audio-tapes of what these patients are told by chemotherapy nurses prior to their chemotherapy.

Principal Investigator: Ben Colagiuri (PhD student)
CeMPED Chief Investigator: Prof Phyllis Butow (PhD supervisor)
Research Coordinator: Ben Colagiuri
Funding: Unfunded PhD project



The Sword of Damocles; An exploratory study of fear of recurrence in young women with early-stage breast cancer.

A large proportion of women with breast cancer, particularly younger women, experience ongoing fears of recurrence, and this chronic uncertainty of life after cancer treatment can be a significant psychological burden. This inter-related series of studies aims to: a) document the prevalence of fear of recurrence amongst young women survivors of breast cancer; b) to investigate the relationship between fear of recurrence amongst young women survivors of breast cancer and clinical features, demographics, health behaviours and psychological morbidity c) qualitatively explore the impact of fear of recurrence on the lives of young women with a history of breast cancer; and d) identify the coping strategies that younger women use to deal with fear of recurrence. These aims will be achieved through a large survey of women 1 or more years post diagnosis, and a smaller qualitative study of women with particularly severe or mild anxiety about recurrence.

Principal Investigator: Dr Belinda Thewes
Research Coordinator: Dr Belinda Thewes
Funding: NBCF Fellowship



The introduction of routine psychological screening for newly diagnosed rural cancer patients. Does it lead to better outcomes for patients and multidisciplinary care?

A sizeable proportion of cancer patients develop clinically significant distress and psychological morbidity and report unmet psychosocial needs. There is an increasing demand for routine screening using validated questionnaires for such distress. The feasibility, acceptability and efficacy of routine screening has not been well evaluated, particularly in rural areas where services may be less than in urban areas. This pilot project aimed to:
a) Prospectively investigate the acceptability and feasibility of the introduction of a routine standardised psychological screening program for all newly diagnosed patients at participating oncology clinics within a large rural health service.
b) Explore the impact of routine screening on rates of referral to psychosocial services for individuals with significant levels of psychological morbidity, and unmet needs reported by patients, pre and post introduction of a routine psychological screening program.
c) Explore the sensitivity and specificity of the Distress Thermometer as a screening tool for distress in Australian rural cancer patients.
83 newly-diagnosed adult cancer patients, seen at one of 3 participating rural outpatient oncology clinics, participated in this study, 40 in a pre-screening and 43 in a post-screening phase. Data are currently being analysed.

Principal Investigator: Dr Belinda Thewes (Clinical Fellow)
CeMPED Chief Investigator: Prof Phyllis Butow (Fellowship supervisor)
Research Coordinator: Dr Belinda Thewes
Funding: CINSW Clinical Fellowship



Improving breast cancer survivorship care in Australia

Increasing numbers of women are surviving breast cancer, and grappling with long-term physical and psychological effects. Currently there are no guidelines for optimal follow-up care of women with breast cancer, and data from US and Europe suggest that the follow-up of many women is inadequate. This project will:
1. Explore experiences and preferences for follow-up care after treatment for early breast cancer held by consumers, health professionals and health care policy makers
2. Develop a Survivorship Care Plan which will aim to deliver high quality, tailored survivorship care to women after breast cancer treatment.
3. Pilot the Survivorship Care Plan as a tool to deliver follow-up care in a cohort of breast cancer survivors over a period of follow-up care. This will include a comparison of follow-up by different groups of health professionals such as specialist oncologists, breast physicians and general practitioners.
4. Develop a Survivorship Care Plan Package that can be implemented in varied follow-up clinics and practices across Australia.

Principal Investigator: Meagan Brennan (PhD student)
CeMPED Chief Investigator: Prof Phyllis Butow (PhD co-supervisor)
Research coordinator: Meagen Brennan
Funding: Friends of the Mater Hospital grant



Exploring the impact of breast and gynaecological cancer in relation to body image and sexuality: Male partner’s perspective.

This study is conducted in collaboration with researchers from Faculty of Nursing and Midwifery, The University of Sydney. The treatment of breast and gynaecological cancers can result in women experiencing short and long term impact on body image, sexuality and sexual function. Whilst sexuality may not be the central focus for the woman and her partner during diagnosis, treatment and/or initial recovery, this can change with time. To date there have been limited studies nationally and internationally, exploring how male partners cope when their partner is diagnosed and treated for breast or gynaecological cancer in relation to body image and sexuality and the impact on their relationships. Similarly, little is known about effective interventions for the male partner during this time in relation to their needs, their relationship and supporting the women’s needs in relation to sexuality and body image. This project aims to explore the impact of breast and gynaecological cancer in relation to their body image and sexuality from the male partner’s perspective.

Principal Investigator: Prof Kate White
CeMPED Chief Investigator: Dr Ilona Juraskova
Research Coordinator: Natalie D’Abrew
Funding: Unfunded PhD project



Randomised Controlled Trial of Nurse Led Education Intervention on Sexuality and Body Image for Women with Breast Cancer

A large proportion of women with breast cancer report ongoing difficulties with sexuality and body image. This study will develop a nurse-led intervention and evaluate it in a randomised controlled trial

Principal Investigator: Prof Kate White
CeMPED Chief Investigator: Prof Phyllis Butow
Research Coordinator: Natalie D’Abrew
Funding: National Breast Cancer Foundation and Cancer Council of Western Australia



OVER (Olive oil Vaginal Exercises and Replens) come: An intervention study to improve sexual function in women with breast cancer

This study is being conducted in collaboration with Prince of Wales Hospital. Vaginal dryness, dyspareunia (pain during sex) and/or vaginismus (painful tightening of the vagina) are reported in up to 50% of breast cancer survivors. Poor vaginal lubrication results in dyspareunia, and women often report anticipatory fear and avoidance of sexual activity, along with involuntary pelvic floor muscle (PFM) contraction resulting in vaginismus. Most women are advised to use a vaginal lubricant during intercourse, but this alone is often inadequate. This pilot intervention study aims to prospectively evaluate the acceptability, safety and efficacy of a novel intervention using PFM relaxation exercises to prevent vaginismus, a vaginal moisturizer (Replens) to alleviate vaginal dryness, and olive oil as a lubricant during intercourse, to reduce sexual difficulties experienced following adjuvant treatment for breast cancer.

Principal Investigator: Prof Michael Friedlander
CeMPED Chief Investigator: Dr Ilona Juraskova
Research Coordinator: Dr Kelly Mok (PhD student)
[[b||Funding: The Susan G KOMEN Breast Cancer Foundation (USA)



Human Papillomavirus (HPV) vaccination from male perspective: The Health Belief Model (HBM) and the effect of information framing

Human Papillomavirus (HPV) is the most common sexually transmitted infection (STI). Infection with low-risk HPV types (HPV 6 & 11) causes 90% of genital warts, while infection with high-risk types (HPV 16 & 18) causes 70% of cervical cancer. In 2006, an HPV vaccine (Gardasil) designed to prevent both cervical cancer and genital warts was made available in Australia. Clinical trials of the vaccine have demonstrated 95% efficacy for the prevention of cervical cancer and nearly 100% protection against genital warts in young women. Recently, it has been recommended that men are also included in the HPV vaccination program. If such programs are to be successfully implemented, it will be crucial to understand male views on both the virus and HPV vaccine in order to most effectively target this population within the vaccination programs. This study aims to: i) examine young male’s knowledge regarding HPV and HPV vaccine; ii) explore the effect of a new construct of “partner care” (i.e. perceived benefits to self with the additional benefit to their female partner); and iii) to evaluate the Health believe Model regarding young males’ intention to receive the HPV vaccination.

Principal Investigator: Dr Ilona Juraskova
Research Coordinator: Tim Paris
Funding: Unfunded Honours project



Integration of Medical Qigong with Western medicine can enhance the quality of life of cancer patients and reduce the side effects of standard medical treatment.

The aim of this study is to evaluate whether Medical Qigong is effective in enhancing the quality of life of cancer patients, reducing the side effects of current standard medical treatment, stress level, fatigue and inflammation. Medical Qigong is an important part of traditional Chinese medicine with a history of more than five thousand years. It is a mind-body practice that uses physical activity and meditation to harmonize the body, mind and spirit. Recent clinical research has indicated that Medical Qigong can be applied as a preventative medicine to assist with stress management, lowering hypertension, reducing chronic pain and improving depression, insomnia, cardiac rehabilitation and immune function.
Over the past several decades, an increasing number of people in Australia and other Western countries have started using complementary and alternative medicine (CAM) to maintain or improve health and well being. Cancer patients are frequent users of CAM: 52% of cancer patients in Australia and up to 91% of patients diagnosed with cancer in the United States use some form of CAM after diagnosis. However, there is little evidence supporting the safety and efficacy of many CAMs to guide health professionals and patients. Thus there is need to develop and evaluate interventions that can improve the supportive care of patients through better management of physical and psychological side-effects.

Principal Investigator: Prof Phyllis Butow / Dr Barbara Mullan
Research Coordinator: Byeongsang Oh
Funding: University of Sydney Cancer Research Fund



An evaluation of concerns, self-perceived needs, and supportive interventions, for informal cancer carers: A comparative study of female and male carers.

This groundbreaking project, lead by PsyHealth: Centre for Research in Gender, Culture and Health, at University of Western Sydney; in collaboration with the Medical Psychology Research Unit, Sydney University; Westmead Hospital; Cancer Council New South Wales; and Carers New South Wales, has two aims: Firstly, to evaluate the concerns, self-perceived needs, and psychological well-being of primary carers for a person with cancer (cancer carers) living in New South Wales, systematically comparing the experience of male and female carers, using a combination of qualitative and quantitative measures, across group comparisons and individual case studies. Based on these findings, to develop a program of targeted supportive interventions for cancer carers, and then to systematically evaluate their relative efficacy, within a controlled trial.

Principal Investigator: Dr Jane Ussher
CeMPED Chief Investigator: Prof Phyllis Butow
Research Coordinator: Mirjana Sandoval
Funding: ARC Linkage grant



The Effect of Chemotherapy-Induced Alopecia versus Androgenetic Alopecia on the Body Image and Quality of Life of Men

Research shows that although chemo-induced alopecia has been comprehensively investigated in the female population there is virtually no research concerning its impact on men and their body image. A recent qualitative study (Hilton et al, 2007 attached) shows that men experience a number of negative/distressing feelings about the hair loss but the prevalence and nature of this aspect of cancer treatment has not yet been systematically explored. The aims of this cross-sectional controlled study are to investigate specific dimensions of body image and quality of life that are affected in male cancer patients with chemo-induced alopecia, compared to male cancer patients receiving chemotherapy with no alopecia side-effects (control group 1), and non-cancer patients with benign urological problems with Androgenetic Alopecia (control group 2).

Principal Investigator: Dr Ilona Juraskova
Research Coordinator: Nissa Allnut
Funding: Unfunded Honours project



Men’s sexual self-perception and activity following treatment for prostate cancer

Men treated for prostate cancer frequently suffer from side effects of sexual dysfunction, which can have a significant negative impact on their self-esteem and intimate relationships. Using face-to-face interviews groups, this project aims to explore the experiences of men previously treated for prostate cancer, particularly with regard to their sexual function, intimate relationships, sense of masculinity and overall self-perception. It is anticipated that the obtained findings will improve understanding of the “new normal” sexual self that emerges at the end of prostate cancer treatment and improve care for men with prostate cancer who are experiencing sexual difficulties. The findings will also inform the development of a specific educational tool, to facilitate post-treatment sexual adjustment of men with prostate cancer and their partners.

Principal Investigator: Dr Ilona Juraskova
Research Coordinator: Narelle Hanly
Funding: Unfunded Masters project



Radiation therapy information for breast cancer patients: appropriate timing, sources and content

This study aims to: (1) determine the information needs of breast cancer patients around
radiation therapy and (2) prioritise these information needs, preferred information sources and
preferences for sequencing of different types of information. This will provide an
understanding of patients’ information needs and preferences at different time points during their radiation therapy. Once patients’ information needs are understood it will be possible to
formulate recommendations for the provision of information to radiation therapy patients, and develop and test an educational intervention that meets patients’ information needs.

Principal Investigator: Dr Georgia Halkett
CeMPED Chief Investigator: A/Prof Liz Lobb
Research Coordinator: Dr Georgia Halkett
Funding: Curtin University of Technology, Cancer Council WA



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Genetic Counselling and Testing


Psychological impact of hereditary cancer and the development and evaluation of effective patient education and decision support strategies

Ethical practice requires that we are confident that information about genetic risk information and test results can be provided without damaging psychological or behavioural consequences. This 5 year research program includes assessments of the impact of genetic testing for hereditary melanoma (Project 1). In addition, a decision aid will be developed and evaluated for men at increased risk for prostate cancer (Project 2). This Strategic Research Partnership Grant will also update existing patient education materials. It will also evaluate telehealth cancer genetic counselling services (Project 3.1) and explore the beliefs about hereditary cancer amongst Middle Eastern-Australians at increased risk of developing hereditary cancer as well as community members (Project 3.2). Finally, it will assess cancer genetics services practitioners’ perceptions of ethical issues, training and service needs (Project 4.1). CeMPED has completed interviews with practitioners and identified ethical issues, training and support needs and identified future challenges for cancer genetics services.

Principal Investigator: Dr Bettina Meiser
CeMPED Chief Investigator: A/Prof Liz Lobb
Research Coordinator: A/Prof Liz Lobb (Project 4)
Funding: Strategic Research Partnership Grants - Cancer Council of NSW



Radiation therapy information for breast cancer patients: appropriate timing, sources and content

This study aims to: (1) determine the information needs of breast cancer patients around
radiation therapy and (2) prioritise these information needs, preferred information sources and
preferences for sequencing of different types of information. This will provide an
understanding of patients’ information needs and preferences at different time points during their radiation therapy. Once patients’ information needs are understood it will be possible to
formulate recommendations for the provision of information to radiation therapy patients, and develop and test an educational intervention that meets patients’ information needs.

Principal Investigator: Dr Georgia Halkett
CeMPED Chief Investigator: A/Prof Liz Lobb
Research Coordinator: Dr Georgia Halkett
Funding: Curtin University of Technology, Cancer Council WA



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Survivorship Research


Educating Patients about chemotherapy: How communication influences what side effect people expect and experience

Nursing staff play a vital role in educating patients about their medical treatments, yet we know little about what they actually say. What and how patients are told about chemotherapy may influence what they expect to happen, and their actual experience of side-effects. There are now considerable data showing the potency of the placebo effect. If patients are told they may get side effects (even those that are quite rare), they may be more likely to report them, and to experience more severe reactions. Principals of patient care and informed consent need to be balanced in the provision of information. Other countries have guidelines about informing patients about chemotherapy; none exist in Australia.
This study aims to document in detail the content and manner in which information about chemotherapy is conveyed during nurse and patient encounters, patient expectances before and after the 1st chemotherapy cycle, and their experiences of side-effects after the 1st and 2nd chemotherapy cycles. The results of this study will help us to understand how patients react cognitively and physiologically to information they are given, and to develop standard materials and guidelines for chemotherapy education

Principal Investigator: Prof Phyllis Butow
Research Coordinator: Haryana Dhillon
Psychology Honours projects: Mayumi Oguchi, Jason Tan
Funding: COSA and Roche Product HOTTAH Award



Cognitive function and fatigue in cancer patients after chemotherapy: a longitudinal, controlled study in patients with colorectal cancer

Use of systemic therapy has increased the survival of patients with colorectal cancer, but their quality of life may be affected long-term by cognitive dysfunction and fatigue. The recent literature demonstrates a growing awareness of these problems in the treatment of other tumour sites, particularly breast cancer, and it is likely that they are under- recognised problems in colorectal cancer. This study will give important information about the incidence, severity and duration of these symptoms, which is necessary for counselling patients who are about to commence chemotherapy. It will give insight into mechanisms and will generate hypotheses about causative factors, which might provide a basis for future studies of interventional strategies.
This is a prospective, longitudinal, controlled study of cognitive function and fatigue in patients with apparently localized CRC treated with adjuvant or neoadjuvant chemotherapy. In addition to following each patient over time (i.e. acting as their own control), a separate control group will consist of patients with early stage CRC (Stage A or B) who have had surgical resection of their tumour, but who do not require adjuvant chemotherapy, or patients with stage C CRC who have declined chemotherapy.
Also included is a smaller sub-study of patients with limited metastatic CRC who are treated with more toxic chemotherapy.

Principal Investigator: Dr Janette Vardy
Research Coordinator: Haryana Dhillon
Funding: ASCO Young Investigator Award, NHMRC Project Grant, Cancer Institute NSW



Cognitive rehabilitation for breast cancer survivors with perceived cognitive impairment

Some people who have received chemotherapy after a diagnosis of cancer complain of problems with concentration, thinking & memory. This can cause problems with day-to-day function, and has been called chemo-fog or chemo-brain. There are no interventions known to help survivors with this problem. It is widely recognised that some people experience changes in their cognitive function after a diagnosis of cancer and chemotherapy; in some people these changes are long-lasting and impact significantly on their daily lives. These changes can be distressing for people. This study is an attempt to identify strategies that will either improve cognitive function through cognitive exercises or assist women in developing strategies to manage with their changed cognitive function.
We will assess two rehabilitation interventions and compare them to an observation only group to evaluate whether these interventions improve self-reported cognitive impairment in cancer survivors. Women who have finished at least 3 cycles of chemotherapy at least eight weeks before they decide to join the study, will be randomised to either standard care (no intervention) or one of two programmes designed to improve their memory, concentration and reaction time.
This study will provide important information about the capacity of specific approaches to ameliorate cognitive impairment in women after chemotherapy for breast cancer. This will increase the ability for women to function well on a day to day basis after their treatment has finished; it will reduce the longer term impacts of chemotherapy on the population. The research questions addressing mechanisms leading to cognitive impairment may generate hypothesis for future research. In time this may prevent or alleviate the incidence of cognitive impairment associated with cancer and/or chemotherapy.

Principal Investigator: Dr J Vardy and Ms Haryana Dhillon
Research Coordinator: Haryana Dhillon
Funding: Cancer Institute NSW



Efficacy and safety of Ginkgo Biloba for cognitive function and fatigue in breast cancer patients undergoing adjuvant chemotherapy

The herb ginkgo biloba is taken by many people, including people with cancer. We know from studies in people who are developing dementia, that ginkgo biloba may slow down the worsening of their disease. We think it might help prevent changes in memory, concentration, reaction time, and organisational thinking if taken during and after chemotherapy treatment. We know little about how ginkgo biloba might interact with the chemotherapy. This study aims to evaluate in a prospective, longitudinal, randomized placebo-controlled trial the effects of ginkgo biloba (GB) on cognitive dysfunction and fatigue associated with adjuvant chemotherapy (CTh) in breast cancer survivors; to investigate the underlying mechanisms of fatigue and cognitive impairment in cancer survivors; and to evaluate possible interactions between GB and anthracyclines and taxanes.
Sub studies will include fMRI examinations, NP assessment prior to breast surgery as well as the assessments listed above to obtain pre-surgery cognitive function and fatigue information, Pharmacological sub studies will obtain pharmacokinetic and pharmacodynamic information about GB and any interaction with CTh and hormonal anti cancer treatment respectively.

Principal Investigator: Dr J Vardy and Ms Haryana Dhillon
Research Coordinator: Haryana Dhillon
Funding: ASCO Career Development Award



A randomised, placebo-controlled, crossover trial of acetaminophen/paracetamol in cancer patients on strong opioids

It is estimated that 75% of people with advanced cancer suffer significant pain. Our study is to determine if the addition of regular paracetamol, for cancer patients already on a stable opioid regimen, can improve their pain. Patients will be randomised to receive either paracetamol 1g four times a day or an identical appearing placebo for a seven day period and then crossed over to the other arm for a further seven day period. Patients will complete daily pain diaries and weekly questionnaires and comparison will be made between the pain scores and potential side effects for the two treatment periods. Patient preference for the two treatment periods will also be evaluated.

Principal Investigator: Dr J Vardy
Research Coordinator: Haryana Dhillon
Funding: Unfunded



On the receiving end: patient perceptions of the side effects of cancer chemotherapy in 2008

A study conducted by the Sydney Cancer Centre in 1983 and again in 1993 identified and ranked the symptoms experienced by patients with cancer who were receiving chemotherapy. This 2008 study addresses the important issue of the symptoms and side effects of chemotherapy from a patient’s perspective. The last twenty years has seen an increase in patients wanting to be involved in decisions about their cancer care and wanting extensive amounts of information about all aspects of treatment including side effects. It is now well accepted that evaluation of quality of life or symptom control should be based on patient self-report. The results of this study have the potential to fully inform oncologists and health professionals as well as patients and their family about the side effects that they are likely to experience and information about the patient’s perception of which side effects are the most severe and have the greatest impact on them. This information will be used to identify priorities for research into managing these side effects as well as providing information to help patients and professionals make informed decisions on choice of treatment.

Principal Investigator: Dr Janette Vardy / Prof Martin Tattersall
Research Coordinator: Haryana Dhillon
Funding: Unfunded study


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End of life issues


Cancer pain education for patients

This study is aiming to determine if an educational intervention (booklet and video) improves knowledge and attitudes regarding pain management, anxiety levels, pain scores and quality of life compared with standard care in Australian patients. The intervention was developed on the basis of the literature and focus groups held with patients and carers. Recruitment is ongoing.

Principal Investigator: Dr Fran Boyle
CeMPED Chief Investigator: Prof Phyllis Butow
Research Coordinator: Melanie Lovell
Funding: None



Group education program for family caregivers of people receiving palliative care in an inpatient setting

The aim of this project is to develop and evaluate an educational program offered to family caregivers who are supporting a relative who is receiving palliative care in an in-patient setting. The education program seeks to help family caregivers manage their role and to prepare them for the patient’s home care where appropriate. It is hoped that family caregivers who have attended the program will be more competent, better prepared and more informed about their care-giving role. An additional benefit from attending the program will be the opportunity for family caregivers to meet others in similar situations to themselves.

Principal Investigator: A/Prof Peter Hudson
CeMPED Chief Investigator: A/Prof Liz Lobb
Research Coordinator: Naomi McGowan
Funding: NH&MRC Palliative Care Grants Program



Grief and loss counselling for people affected by cancer in Western Australia: Towards best practice

Research demonstrates a clear difference between understandings of grief within contemporary literature and the current practices of health professionals. A key source of the disparity is the inadequacy of health professionals’ grief education and training. The proposed research will document the presence and scope of grief education in undergraduate and postgraduate tertiary training programmes for key health professionals and identify strategies for future directions in grief education.

Principal Investigator: Dr Lauren Breen
CeMPED Chief Investigator: A/Prof Liz Lobb
Research Coordinator: Dr Lauren Breen
Funding: Cancer Council of WA



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