Current Research Projects

Current Research Projects

Health professional-patient communication

[FUSION] Investigating the doctor-patient-Family triad to gain an Understanding of Shared decisION making
The diagnosis of a life-threatening illness such as cancer and its aftermath is characterised by great emotional burden and uncertainty, affecting not only the patient but also their family. Family members/companions can have a considerable impact on the dynamics and outcomes of medical encounters. Despite this, research into medical decisionmaking has focused almost exclusively on interactions between the doctor and patient (doctor-patient dyad), essentially ignoring the influence of the family (doctorpatient-family triad). The absence of research in this area is remarkable considering the growing number of studies that identify family support as a factor affecting patient distress at every phase of the illness trajectory. This project explored the doctor-patient-family (triadic) role in shared decision-making (SDM) and developed an explanatory framework for these interactions over time and in different contexts. In the current phase, we are developing an evidence- and consensus-based set of strategies for health professionals to use, to facilitate appropriate and preferred involvement of family in consultations and decision-making. We will develop an online consultation skills module featuring these strategies, which will be piloted.

Principal Investigator: A/Prof Ilona Juraskova
Research Coordinator: Rebekah Powell (initially Phd student, now Post-doctoral Fellow)
Funding: Australian Research Council (ARC)
Project timeline: 2014-2016

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.

Interventions to assist decision-making about screening and prevention

Informing women about over-diagnosis in mammography screening: a randomised trial
Over-diagnosis is a common but often unacknowledged aspects of mammography screening. To allow truly informed consent, women need to know about the possibility of over-diagnosis. This study is evaluating different methods of informing women about this risk.

Principal Investigator: Prof Kirsten McCaffery
Research Co-ordinator / PhD student: Dr Jolyn Hersch
Funding: NHMRC
Project timeline: 2014-2016

Should I take low dose aspirin? The Optimise decision aid study.
Low dose aspirin is potentially efficacious in reducing risk of cancer and other diseases, but also has potential side effects. This study is evaluating a decision aid to help general practice patients decided whether to take low dose aspirin or not.

Principal Investigator: A/Prof Lyndal Trevena
Funding: NHMRC
Project timeline: 2014-2016

Interventions to assist decision-making about treatment options

Evaluating the Utility of a Patient Decision Aid for Prospective Participants in the TROG RAVES Prostate Cancer Trial (TROG 08.03).
Deciding whether to join a clinical trial is a difficult task, and current information sheets tend to be long and difficult to understand. Decision aids to assist informed consent have been successfully evaluated in the breast cancer surgical and chemotherapy context, but not in a radiotherapy trial. In this study, we are conducting a randomised controlled trial to evaluate a decision aid for men with high risk prostate cancer following prostatectomy, who are considering the RAVES trial. The RAVES trial is randomising men to a wait and watch arm, or immediate radiotherapy arm.

Principal Investigator: Dr Puma Sandereson
CeMPED Investigator: Prof Phyllis Butow
Research Co-ordinator: Ms Brittany Agar
Funding: Prostate Cancer Foundation of Australia
Project timeline: 2012-2016

ASTROID: Decision aid and DVD information support for men diagnosed with low-risk prostate cancer and their partners
Treatment decisions in prostate cancer are difficult, due to lack of clear survival benefits of one approach over another. This project is evaluating resources to assist men in these decisions.

Principal Investigator: Prof Penny Schofield
CeMPED Investigator: A/Prof Ilona Juraskova
Funding: NHMRC
Project timeline: 2015-2018

Developing and evaluating a decision aid for women considering neo-adjuvant chemotherapy for breast cancer.
Neo-adjuvant chemotherapy (having chemotherapy before surgery) is increasingly used to treat breast cancer. It is just as effective as having chemotherapy after surgery in terms of the cancer coming back (recurrence), and survival. The advantage of this treatment approach, is that the cancer can be shrunk before surgery, making the surgery easier. How the cancer responds to the cancer can also provide useful prognostic information. However, some women feel uncomfortable leaving the cancer in their body for that period. We have developed a decision aid for use in surgeon’s and medical oncology offices, to help women make this decision, and are evaluating it in a single arm trial, in collaboration with the ANZBCTG trials group and PoCoG.

Principal Investigator: Dr Nicholas Zdenkowsky
CEMPED Investigator: Prof Phyllis Butow
Funding: HCF
Project timeline: 2014-2016

Decision tools for women with DCIS
DCIS is a complex disease with a number of decisions to make about treatment. Women are often confused about how DCIS is different to early stage breast cancer. While there are a plethora of decision support tools for early stage breast cancer, there are far fewer for DCIS. Existing tools lack information about quality of life impacts of different treatment options. This project aims to conduct systematic reviews about the evidence for DCIS treatments, and to construct decision support information resources for women.

Principal Investigator: Prof Madeleine King
CeMPED Investiagor: Prof Phyllis Butow
Research Co-ordinator / Senior research Fellow: Dr Claudia Rutherford
Funding: MBF
Project timeline: 2014-2016

Use of communication aids at the Oncology Outpatient clinic.
Communication aids, including question prompt lists, have been widely evaluted in Australia, but it is not clear how they should be adapted cross culturally. This project is develping and piloting question prompt lists, in Sweden.

Principal Investigator: Dr Tone Nordoy
CeMPED Investiagor: Prof Martin Tattersall and Prof Phyllis Butow
Funding: Swedish Regional Health Authority
Project timeline: 2014-2016

A decision aid for patients with bipolar II disorder and their families to decide on treatment options
Shared decision-making is increasingly recognised as the preferred approach to many decisions about mental health treatments. This pilot study and Phase II feasibility Randomised Controlled Trial aim to evaluate a decision aid booklet and website to support patients with bipolar II disorder and their families to make informed treatment decisions about first-line medications and adjunctive psychological treatment options.

Principal Investigator: A/Prof Ilona Juraskova
Research Co-ordinator / PhD student: Ms Alana Fisher
Funding: Australian Rotary Mental Health Grant
Project timeline: 2015-2019

Developing and piloting a decision aid for women with early stage breast cancer considering contralateral prophylactic mastectomy
One option after treatment for early stage breast cancer, to reduce risk of developing breast cancer in the unaffected breast, is to remove that breast (contralateral prophylactic mastectomy - CPM). However, for women at low risk, the risk of cancer in the unaffected breast is very low. Thus, because any additional surgery carries risks, CPM is not generally recommended to reduce risk in these women. Other reasons to have CPM include to balance the chest, and to avoid having regular screening, with its associated pain and anxiety. To assist women to make an informed choice about this treatment option, we have conducted a systematic review, and developed a decision aid. This will be piloted in a small sample of experienced breast cancer survivors.

Principal Investigator: Prof Phyllis Butow
Research Co-ordinator: Ms Brittany Agar
Funding: ANZBCTG Seed funding
Project timeline: 2014-2016

Supporting evidence-based practice

ADAPT: Anxiety and Depression Pathway Program
Anxiety and depression are common in cancer patients, but are often unidentified and undertreated. PoCoG has developed an evidence-based and consensus-based clinical pathway for anxiety and depression in cancer. This program grant is creating system, health professional and patient resources to facilitate the implementation of the pathway, and evaluating in a cluster randomised controlled trial, an intensive versus moderate implementation strategy.

Principal Investigator: Prof Phyllis Butow
Research Co-ordinator: Dr Heather Shephard
Funding: CINSW Translationa Program grant
Project timeline: 2015-2019

RoADMAP: Reducing times from suspicious CT-Scans to specialist appointments in lung cancer:
Delays in diagnosis and treatment are well documented in lung cancer. One contributing factor is that individual GPs rarely see lung cancer cases, do not always have effective referral pathways, and can delay referral to specialist care. This project has identified evidence-to-practice gaps in lung cancer, gathered qualitative data from patients, GPs and Oncology health professionals regarding these gaps, and is now evaluating a potential pathway to reducing tims from suspicious CT-Scans to specialist appointments in lung cancer, through provision of referral guidance with the CT-Scan report sent back to the GP.

Principal Investigator: Prof Tim Shaw
CeMPED Investigator: Prof Phyllis Butow
Research Co-ordinator/Senior Research Fellow: Dr Nicole Rankin
Funding: Sydney Catalyst Top-down funding
Project timeline: 2015-2016

Understanding interventions to get evidence into policy
Complex interventions are required to encourage policy making organisations to incorporate evidence into policy. The Saxe Institute has been conducting a randomised controlled trial (SPIRIT) of a complex intervention to achieve this aim. This project aims to understand in a fine-grained way, how and why different components of the intervention work.

Principal Investigator: Prof Sally Redman
CeMPED Investigator: Prof Phyllis Butow
Research Co-ordinator/PhD Student: Ms Abby Haynes
Funding: None
Project timeline: 2014-2016

Improving Outcomes for Non English-speaking Migrants with Cancer

Health literacy in Chinese speaking patients with cancer, and their caregivers.
We have documented in earlier studies disparities between first generation migrants and English-speaking Australian-born patients with cancer, in quality of life and distress. In those studies, difficulties communicating in English and unfamiliarity with the health system were major predictors of disparity. However, we did not formally assess health literacy. In this current study we are recruiting Chinese patients, and their caregivers, into a cross-sectional survey of health literacy, perceptions of care- co-ordination, and distress, in collaboration with The Cancer Council NSW, CanCare and CanRevive (Chinese community cancer organisations). We have also conducted a systematic review of the literature on health literacy interventions for CALD cancer patients.

We hope these data will inform future work, also building on output from other ongoing CALD studies on which we are collaborating, with the Peter McCallum Cancer Centre (trialing provision of an audiotape of their oncology consultation to CALD patients; and developing translated and culturally appropriate cancer survivorship booklets), the University of NSW (developing and piloting a website for Oncology health processional education about providing culturally appropriate care and appropriately involving an interpreter), and the CCNSW (developing in-language webinars for Chinese cancer patients).

Principal Investigator: Prof Phyllis Butow
Research Co-ordinator / Post-doc: Dr Bee Lim
Funding: University of Sydney near miss grant
Project timeline: 2015-2016

Psychosocial predictors of disease outcomes

kConFab Psychosocial Study: 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 Cunningham 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
Project timeline: 2001 – 2016

Psychological adjustment to illness and improving quality of life

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
Project timeline: 2009 – 2016

Ibudilast as a therapy for chemotherapy-induced neuropathic pain and cognitive impairments
Neuropathic pain and cognitive impairments are relatively common side-effects of chemotherapy with few treatments available for supportive care. This study is testing a new agent: Ibudilast.

Principal Investigator: Prof Ian Johnston
CeMPED Investigator: Prof Janette Vardy
Funding: Cancer Council NSW
Project timeline: 2015-2017

Interventions to improve outcomes for adolescents and young adults with cancer
Adolescents and young adults with cancer face real challenges because of their developmental stage, in adjusting to a cancer diagnosis. This program grant is investigating a variety of interventions to facilitate adjustment in this group.

Principal Investigator: A/Prof Claire Wakefield
CeMPED Investigator: Prof Phyllis Butow
Funding: Cancer Council NSW
Project timeline: 2016-2020

Survivorship Research

CHALLENGE: Colon Health And Life Long Exercise ChaNGE
The CHALLENGE study is a joint collaboration with the National Cancer Institute of Canada, which is funding the Canadian component of the study. The study will recruit patients who have been diagnosed with colon cancer to take part in a structured exercise program. The study aims to show whether exercise can reduce the risk of cancer recurrence as well as improving fatigue, quality of life and physical fitness in colon cancer survivors. Around 1,000 people from Australia and Canada will be recruited to take part in the study.

Principal Investigator: Vardy JL, Dhillon HM, van der Ploeg H, Zalcberg JR, Courneya K, Meyer R
CeMPED Chief Investigator: A/Prof. Janette Vardy
Research Coordinator: Ms Emma Goddard
Funding: NHMRC
Project timeline: 2009 – 2016

Cognitive function and fatigue in cancer patients after chemotherapy: a longitudinal, controlled study in patients with colorectal cancer
This ongoing multisite study is a collaboration between Princess Margaret Hospital, Toronto, (Dr Ian Tannock) and Sydney Cancer Centre, Australia (Dr Janette Vardy). It is a prospective, longitudinal, controlled study of cognitive function and fatigue in patients with apparently localized colorectal cancer treated with adjuvant or neoadjuvant chemotherapy (CTh). In addition to following each patient over time (i.e. acting as their own control), a separate control group consists of patients with early stage CRC who have had surgical resection of their tumour, but who do not require CTh. Also included is a smaller sub-study of patients with limited metastatic CRC or local recurrence who are treated with oxaliplatin or irinotecan regimens for first line metastatic disease.

Principal Investigator: Vardy J, Clarke SJ, Tannock IF, Schnitzler M, Dhillon H
CeMPED Chief Investigator: A/Prof. Janette Vardy
Research Coordinator: Corrinne Renton
Funding: ASCO Young Investigator Award, NHMRC Project Grant, Cancer Institute NSW, Sydney Catalyst Pilot, Seed Funding
Project timeline: 2004 – 2017

An evidence-based clinical pathway and toolkit for survivorship care in young women with breast cancer at high risk of stopping endocrine therapy prematurely.
Prolonged endocrine therapy is recommended to reduce relapse from breast cancer, but has difficult side effects and many women cease prematurely, especially younger women who are bothered by menopausal symptoms. This project aims to develop and pilot a pathway to facilitate the care of these young women.

Principal Investigator: Dr Haryana Dhillon
Research Co-ordinator: Dr Haryana Dhillon
Funding: Sydney Vital Fellowship
Project timeline: 2015-2016

Rekindle Sexuality After Cancer: a Novel Web-Based Psychoeducational Resource for BOTH Survivors and their Partners.
Sexual dysfunction after cancer is common, but poorly identified and managed. This study is evaluating a web-based psycho-educational resource for survivors and partners.

Principal Investigator: Dr Catalina Lawsin
Lead CeMPED Investigator: Dr Haryana Dhillon
Research Co-ordinator: Dr Amelia Beaumont
Funding: ARC
Project timeline: 2013-2016

Improving the quality of care of cancer survivors
Many aspects of quality, patient-centred care are not currently implemented in practice. This program grant will investigate systematic ways to screen for the needs of cancer survivors (from the time of diagnosis), and provide appropriate care for them.

Principal Investigator: Prof Rob Sanson-Fisher
Lead CeMPED Investigator: Prof Phyllis Butow
Funding: NSWCC
Project timeline: 2016-2020

End of life issues

Advance care planning in incurable cancer patients with disease progression on first line chemotherapy: a randomised trial.
Advanced care planning is recommended but is still uncommon. This study is evaluating nurse-delivered advanced care planning for patients in the last year of life.

Principal Investigator: Prof Martin Tattersall
Research Co-ordinator / PhD Student: Dr Stephanie Johnston
Funding: NHMRC
Project timeline: 2013-2016