Supporting consumer 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.

View the following current projects:


Advanced care planning intervention in cancer patients

In a randomised controlled trial the effect of a formal advanced care planning intervention on the documentation of incurable cancer patients wishes, compliance with known end of life wishes and the quality of death are being evaluated. The intervention aims to promote discussion between patient and carer and the health care team about life expectancy and end of life issues and to promote documentation of the patient's preferences for continuing and end of life care which will be countersigned by the oncologist.

Members involved: Martin Tattersall


Ask, Share, Know

This study follows on from an RCT which trained standardised patients to ask three questions (based on the framework from Smart Health Choices). The questions significantly increased shared decision-making and the Ask, Share, Know study has successfully trained real consumers to ask these questions through watching a four minute video in the waiting room. Links to the www.askshareknow.com.au website have been requested and adopted by consumer and healthcare groups including the Consumers Health Forum of Australia, Arthritis Australia, Health Consumers Alliance of South Australia.

Members involved: Lyndal Trevena and Heather Shepherd


Building capacity to reduce cervical cancer mortality in rural women of Tamil Nadu

We have established a network of cervical cancer screening program developers and implementers across India. The project includes provider training and evidence-based tools to facilitate communication - aiming to improve cervical cancer literacy amongst the women in local rural communities. A voice site for women is under feasibility testing.

Members involved: Lyndal Trevena

Funded by: AusAid Public Sector Linkage Program, Christian Medical College, Vellore Rural Unit of Health and Social Affairs, Weill Cornell Medical College and Cancer Council Australia


Communicating uncertainty in health risk information: an experimental study

This study uses an experimental design to investigate the impact of presenting quantitative uncertainty (in the form of a range ie. confidence interval) on perceptions of benefits and harms and decision making about a hypothetical drug for migraine relief. This work seeks to provide evidence on how to present uncertainty in decision aids to support shared decision making.

Members involved: Kirsten McCaffery, Jovana Sladakovic, Jolyn Hersch, Robin Turner, Jesse Jansen


CVD risk communication

This project is investigating how GPs and patients make decisions about cardiovascular disease (CVD) prevention, through either lifestyle change or the use of preventive medication. Current guidelines advocate decision making based on absolute risk thresholds - the probability of a cardiovascular event over a period of time, based on multiple risk factors. However, the use of absolute risk assessment in practice is limited, GPs find it difficult to explain to patients, and patients may prefer a different approach to what is recommended in the guidelines. This research aims to determine the factors that are important to GPs and patients when deciding about CVD risk management, in order to identify ways in which CVD prevention might be improved. This research will examine role of risk communication in SDM, and the cognitive mechanisms underlying the effect of SDM interventions, such as decision aids.

Members involved: Kirsten McCaffery, Carissa Bonner, Jesse Jansen, Shannon McKinn, Jenny Doust, Paul Glasziou, Armando Teixeira-Pinto, Les Irwig


Development of decision support tools for pregnant women considering immunisation

This work is led by Julie Leask and involved developing and evaluating patient and provider decision support tools for pregnant women - particularly for seasonal flu vaccination. The work also includes materials specifically designed in partnership with Indigenous Australian communities.

Members involved: Lyndal Trevena, Julie Leask and Kerrie Wiley


Empowering patients to obtain preferred information about prognosis and end of life issues, and to be involved in advanced care planning

This study is testing the efficacy of a nurse-led intervention to introduce a question prompt list and encourage question asking about prognosis, end of life issues and advanced care planning in Oncology patients estimated to have less than 1 year to live. This is a randomized controlled trial being conducted in multiple centres in NSW. The primary endpoint is patient self efficacy in asking questions about the end of life, secondary endpoints include questions asked in the next oncology consultation; whether an advanced care plan is put in place, care at the end of life, and bereaved carers’ perceptions about the patient’s quality of death.

Members involved: Phyllis Butow, and Adam Walczak


End-of-life Communication

This research aims to understand and improve communication between patients, caregivers and health professionals regarding challenging topics including life expectancy and goals and preferences for care at the end-of-life. The communication support intervention aims promote such discussions early in the final year of life, in concert with consideration of further chemotherapy, radiotherapy or surgery and prior to crisis admission to palliative care. By enhancing and normalising communication about these issues, this research hopes to promote shared decision-making and knowledge about care goals and treatments between patients, caregivers and oncologists. Through enhanced end-of-life communication, particularly with regards to Advanced Care Planning, this research aims to improve quality-of-life at the end-of-life and reduce futile care measures and caregiver burden.

Members involved: Adam Walczak


Evaluating a question prompt list in people with myelodysplastic syndromes (MDS)

Myelodysplastic syndromes are complex and hard to explain or understand. This research is piloting a question prompt list for patients and their families. In the first stage, we are seeking patients’ feedback on a draft QPL, and measuring their information needs and preferences for involvement in decision making. This study will be conducted in France and Australia through patient support group organisations.

Members involved: Principal Investigator Julien Mancini, Phyllis Butow


Evaluating a vaccine communication framework

Post-doctoral research fellow Julie Leask and international collaborators are refining and evaluating a framework for communication about vaccination tailored to parental attitudes.

Members involved: Lyndal Trevena and Julie Leask


Evaluating decision aids to support decisions about participation in clinical trials

We have completed one RCT, and are currently completing another evaluating a decision aid for men with prostate cancer deciding whether to join the RAVES trial (immediate versus delayed radiotherapy).

Members involved: Phyllis Butow and Research Co-ordinator, Brittany Agar


Overdiagnosis in cervical screening among women under 25 years

Using an experimental design we are investigating the impact of presenting young women (aged 18-25) information about overdiagnosis and overtreatment in cervical screening and are comparing this to a non-cancer screening example. The primary outcome is intention to screen and secondary outcomes include decisional conflict, attitudes to screening, understanding and measures of perceived risk and worry about cancer. This work is examining how provided information to support shared decision making in cervical screening for young women, impacts decisions and psychosocial outcomes.

Members involved: Kirsten McCaffery, Kate Phillips, Jolyn Hersch, Jesse Jansen, Dr Robin Turner.


Randomised Controlled Evaluation of a Complex Intervention to Promote Uptake of School-based HPV Vaccination

This is a randomised trial of a multifaceted complex intervention to enhance the uptake of school based HPV vaccination targeting adolescent girls, boys and their parents to improved shared decision making and logistical aspects of program delivery.

Members involved: Kirsten McCaffery, Assoc Prof Rachel Skinner, Dr Spring Robbins, Prof Greg Zimet, Dr Kevin McGeehan, Dr P Whyte, Dr D Regan, Dr M Kang, Dr A Mitchell, Prof J Kaldor and Julie Leask


Review of Sexual and Reproductive Health Partnership, Marie Stopes International Timor-Leste

This 12 month project examines the impact of sexual and reproductive health programs delivered by Marie Stopes International through the SISCa program in Timor-Leste.

Members involved: Lyndal Trevena


Shared decision making for older adults

This research looks at shared decision-making among older adults and their clinicians. The case for shared decision-making among older adults is particularly strong for several reasons. Decision-making for this group is often very complicated, it involves the weighting of many different factors, and there is lack of clinical evidence to base decisions on. To add, heterogeneity increases with age and older adults’ preferences will vary widely depending on for example their frailty, level of education, cognitive and health status. The decision-making process therefore needs to be highly individualized.

Members involved: Kirsten McCaffery, Jesse Jansen


Should I take low dose aspirin?

This project is funded by Sydney Catalyst to develop and pilot test a decision for people aged 50-59 years considering low-dose aspirin. It seeks to translate the emerging evidence on the benefits of aspirin for prevention of cancer (particularly GI) in addition to cardiovascular disease. However, this needs to be traded off against an increased risk of bleeding and such decisions should be personalised according to patient’s clinical profiles and preferences. We are seeking funding for an RCT to test the efficacy of this tool.

Members involved: Lyndal Trevena

Funded by: Sydney Catalyst


Smartphone Application Decision Aid for the Cessation of Smoking

The effectiveness of smoking cessation apps will be soon examined in a new project that is planned to start in July 2013. The project will compare standard smoking cessation method (information only) with a decision making method, plus will follow up the result of the decision in the long term and will also monitor decision changes over the follow up period. Although this study involves some shared decision making in the intervention group, we are not currently looking at shared decision making as main outcome. However, the outcomes of decisions that involve shared decision making are documented to be analysed.

Members involved: Nasser Dhim and Lyndal Trevena


The PROCARE trial

This NHMRC funded phase II clinical trial is a PC4 initiated study evaluating share care for patients with prostate cancer.

Members involved: Lyndal Trevena


Triadic decision making

In this study we have conducted a systematic review on triadic communication, interviewed oncologists, patients and carers about the role of carers in consultations, and their experience of communication in this setting, developed a coding system of triadic communication and have compared audiotaped oncology consultations with and without a 3rd party (family) on communication and decision-making behaviours.
We now plan to develop a framework for triadic decision making, guidelines, and training for oncologists and patients/carers in triadic decision making (pending funding).

Members involved: Ilona Juraskova and Rebekah Powell


Understanding and improving cancer communication and decision making among patients with low education and literacy

Patients with cancer are increasingly expected to process complex medical information and make decisions about their treatment and follow-up care. There is growing concern that many patients do not have the health literacy skills to do this effectively. While there have been major advances to inform and involve patients with cancer in treatment decision making, there has been little research with patients who have lower health literacy. This is an important group who have limited health knowledge and experience poorer health outcomes. Our aim is to identify ways to improve patient understanding and involvement in cancer consultations, particularly among patients with low health literacy. This study has 3 components: 1) interviewing health professionals about health literacy; 2) Screening and interviewing patients of lower health literacy; 3) Audio recording consultations between radiation oncologists and patients.

1) This project involves qualitative interviews with radiation oncologists, radiation therapists and radiation oncology nurses involved in the care of people receiving radiotherapy as treatment for cancer. Participants are interviewed about their experiences communicating with people of lower health literacy levels and its impact on treatment and follow-up care. The findings from this project will provide important evidence about how to optimise communication to and decision-making by radiotherapy patients with lower health literacy skills.

2) We are screening health literacy levels of patients attending for radiotherapy treatment and interviewing those of lower literacy levels about their experience of preparing for treatment.

3) Audio recording consultations between patients and their radiation oncologist to explore how their communication may be influenced by the patient's health literacy level.

Members involved: Dr Sian Smith and Haryana Dhillon