Supporting consumer decision making

View the following completed projects:

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.

Investigators: Christine Roberts, Lyndal Trevena, Camille Raynes-Greenow, Kirsten McCaffery, David Henderson-Smart.

A decision aid in the management of patients with locally advanced rectal cancer

This project is a collaboration between the Surgical Outcomes Research Centre in Australia and Dr Tim Whelen, in Canada, and has developed a decision aid for patients with locally advanced rectal cancer deciding whether or not to have adjuvant chemo/radiotherapy before or after their surgery. The aid is on a computer screen used interactively in the surgical consultation, with patients provided with the same material in a booklet form to take home. The decision aid was piloted in 2004 with participants in the Rotary Bowel screen program, and is currently being piloted in rectal cancer patients. A feasibility study with surgeons is planned for 2006.

Investigators: Phyllis Butow, Michael Solomon, Tim Whelen, Glenn Salkeld, Martin Tattersall, George Rhuby, Jane Young.

A randomised trial of a web-based toolkit for applying evidence in the general practice cervical cancer prevention visit

This trial tests a web-based decision tool for young women aged 19-26 years considering how they can reduce their risk of cervical cancer. It includes information about lifestyle, screening and vaccination options available in the Australian healthcare context.

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.

Investigators: Lyndal Trevena, Alex Barratt, Chris Del Mar, Timothy Dobbins, Kirsten McCaffery

Australian screening mammography decision aid trial

Thinking about whether to have a screening mammogram? If you are a woman aged 40 or more you are eligible for a free mammogram with BreastScreen Australia. There are reasons for and against mammogram screening for breast cancer. The Screening and Test Evaluation Program at the Sydney School of Public Health, University of Sydney is running an on-line trial of a decision aid for women aged 40 years who are considering whether to begin screening mammography. The decision aid gives the latest information about the pros and cons of screening. If you are a woman aged around 40 we invite you to participate in this study and would greatly appreciate your contribution. Go to the Australian Screening Mammography Decision Aid Trial to find more information about this study.

Investigators: Alex Barratt and Erin Matthieu

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.

Investigators: Catherine Jackson (UK), Francine Cheater (UK), Julie Leask, Lyndal Trevena, Cate Wallace

Communication aid for genetic counselling consultations for women at high risk of breast cancer

This project has produced a communication aid to facilitate the communication of risk to women from high risk breast cancer families attending a genetic counseling consultation. The aid is in booklet form, includes text and graphics, and is used interactively in the consultation. A pilot study has shown that the aid is regarded as helpful by both women and geneticists/genetic counselors, does not increase anxiety, and may improve recall, risk perception and understanding.

Investigators: Phyllis Butow, Alex Barratt, Kathy Tucker, Judy Kirk, Alison Moore, David Butt, Liz Lobb.

Decision aid for women with a breech presentation at term

A decision aid was developed for pregnant women diagnosed with a breech presentation (when a baby presents with feet or buttocks rather than head-first) in late pregnancy to inform them about safe and effective options for the management of breech presentation. The decision aid comprised a 24-page workbook, a 30 minute audio-CD and worksheet and was designed in a format that could be taken home and reviewed with a partner. The effectiveness of the decision aid compared with usual care was evaluated in a randomised controlled trial in four Australian obstetric hospitals. In the trial, women were randomised to either receive the decision aid in addition to usual care or to receive usual care only - with standard counselling from their usual pregnancy care provider. Approximately 200 women were randomised to the study and we found women reviewing the decision aid experienced significantly lower decisional conflict- uncertainty (mean difference -8.92; 95%CI -13.18, -4.66), increased knowledge (mean difference 8.40; 95%CI 3.10, 13.71), no increase in anxiety and reported greater satisfaction with decision-making and overall experience of pregnancy and childbirth. Overall, we found the decision aid to be an effective and acceptable tool for pregnant women that provides an important adjunct to standard counselling for the management of breech presentation.

Investigators: Natasha Nassar, Christine Roberts, Alex Barratt, Camille Raynes-Greenow, Brian Peat, David Henderson-Smart

Decision Aids for patients with incurable metastatic colorectal and breast cancer

This project has developed decision aids for patients with incurable metastatic colorectal and breast cancer deciding whether to have active anti-cancer treatment or supportive care. Graphics are used interactively in the consultation, and patients are provided with a take-home booklet with an audiotape. Randomised controlled trials of the decision aids are currently underway.

Investigators: Martin Tattersall, Phyllis Butow, Natasha Leighl, Michael Boyer, Stephen Clarke, Alex Barratt, Jane Beith, Anne Sullivan.

Defining a role for GP's and patients in Multidisciplinary Team (MDT) decisions for cancer care

The project ‘Defining a role for GP's and patients in Multidisciplinary Team (MDT) decisions for cancer care’ is funded by the Cancer Institute NSW. The project aims to seek GPs views about GP involvement and communication with cancer multi-disciplinary teams, when the care of their newly diagnosed patient is being discussed. A report template appropriate for both GPs and their patients that will effectively summarise the care outcomes of MDT meetings will be developed. Adoption of the MDT report for GPs and patients is hoped to enhance the consistency of health professionals’ explanation of treatment options, improve cancer care coordination, reduce patient and health professional misunderstanding, improve compliance with recommended treatment and enable shared decision making. The report format may become a valued block of the electronic patient-held record and the start for a cancer treatment and outcome database.
A related piece of work with WEDG (Workforce Education and Development Group) looks at GP awareness of MDTs and decision-making around referral for cancer care.

Members involved: A/Prof Lyndal Trevena and Alex Hawkey

Funded by: Cancer Institute NSW

Development and preliminary evaluation of a question prompt sheet for palliative care patients and their carers

This project developed a question prompt list (QPL) for people referred for palliative care. The list is based on data derived from focus groups and telephone interviews with people receiving palliative care, their carers, and palliative care health professionals. The QPL endorses question asking and lists questions under categories. A randomized controlled trial of the QPL showed significant effects on patient and carer question asking and information provided, with no attendant increase in anxiety or decrease in satisfaction.

Investigators: Josephine Clayton, Phyllis Butow, Richard Chye, Martin Tattersall

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.

Investigators: Kirsten McCaffery, Les Irwig, Kirsten Howard, Elizabeth Davey, Judith Clarke, Alex Barratt, Glenn Salkeld, Edith Weisberg

Improving informed consent to clinical trials: A decision aid for women invited to participate in a breast cancer prevention trial (IBIS-II)

Current informed consent to clinical trial is often inadequate. Clinicians often report difficulty in explaining trials, and audio-tape audits have shown that in many consent interviews critical information is omitted or poorly presented. It is important to develop ways of improving this process and ensuring that patients understand and feel empowered to reach decisions concordant with their values and needs. The decision targeted in this IBIS-II Decision Aid (DA), whether or not to participate in the IBIS-II trial, is a particularly hard one, involving uncertain benefits and possibly large costs in a group of women who are completely well at the time of recruitment. The use for the DA will be much wider than patients with elevated risk of breast cancer, and may be applied to those with many diseases in which the natural history and evidence about treatment effectiveness is still emerging and who are considering entering a clinical trial. If effective, the DA study has the potential to transform the process of gaining informed consent in large, multi-centre trials. The IBIS-II DA was piloted in 2005 and a randomised controlled trial of the DA will start in 2006.

Investigators: Phyllis Butow, Ilona Juraskova, John Forbes, Alan Coates, Fran Boyle & Nicole McCarthy.

Incorporating QOL Data into informed decision making

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.

Investigators: Kirsten Howard, Glenn Salkeld

International Patient Decision Aids (IPDAS) Risk Communication Primer

An international expert group has updated the evidence and guidelines for development of decision aids. Lyndal has been co-lead author with Brian Zikmund-Fisher on the chapter and manuscript "Presenting Quantitative Information about Decision Outcomes: A Risk Communication Primer for Decision Aid Developers"

Members involved: Lyndal Trevena, Brian Zikmund-Fisher

International Patient Decision Aids (IPDAS) Address Health Literacy in Patient Decision Aids

I am chapter lead for the revised International Patient Decision Aids Standards (IPDAS) committee chapter, ‘Addressing Health Literacy in Patient Decision Aids’ 2011-2013. This project involved leading a team of international researchers working in the field of health literacy and decision aids to review existing literature and develop guidelines to advise decision aid developer how to address the needs of adults with lower literacy. This work is published on the IPDAS website and in a special issue of BMC Health Services Research (currently in press).

Members involved: Kirsten McCaffery, Stacey Sheridan, Don Nutbeam, Margaret Holmes Rovner, Sian Smith, David Rovner, Marla Clayman, Karen Kelly Blake, Michael Wolf

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 planned for 2007.

Investigators: Kirsten McCaffery, Sian Smith, Lyndal Trevana, Alex Barratt, Les Irwig, Don Nutbeam, Phyllis Butow, Judy Simpson.

Making decisions: Should I use hormone replacement therapy? An evidence-based decision aid

The Sydney Health Decision Group was contracted by the Australian Government’s National Health & Medical Research Council to develop a decision aid about the benefits and risks of HRT.
The issues were also discussed in an ABC Radio Series for the Health Report. A report on focus testing of this tool with women from a range of socioeconomic and ethnic backgrounds can be downloaded

Investigators: Lyndal Trevena, Alex Barratt, Kirsten McCaffery, Bruce Armstrong, Annette O’Connor

Mammography Decision Aid for women over 70 years

This decision aid aims to help women around 70 years of age make an informed choice about whether to continue having a screening mammogram every two years. The original version was developed for the Canadian National Breast Screening Committee. An Australian version has been developed and a randomised controlled trial of the decision aid is currently underway.

Investigators: Alex Barratt, Kirsten Howard, Heather Davey, Erin Mathieu, Andrew Page, Nehmat Houssami, Kirsten McCaffery

Mind Express

This study is led by the Black Dog Institute and evaluates an online tool for young people at risk of
depression. It is funded by Beyond Blue.

Members involved: Lyndal Trevena

Funded by: Beyond Blue

The MMR (measles-mumps-rubella) vaccine decision aid. An online tool for parents

This study was the first published study to apply decision aids in the child vaccination arena. The pilot study tested the effects of an online decision aid for parents concerned about the safety of the MMR vaccine. The decision aid provided evidence based information on the risks and benefits of MMR vaccination and the diseases it prevents via a 21 screen online tool. The study showed a significant positive shift in attitudes to MMR vaccination. Further results have been published. A collaboration with Leeds University (UK) is underway.

Investigators: Catherine Wallace, Julie Leask, Lyndal Trevena, Phyllis Butow, Peter McIntyre

My Health Check

This randomised control trial evaluated an online tool for prioritising preventive health activities in 786 adult Australians.

Members involved: Lyndal Trevena

Oncologists’ views about shared decision making

This project has surveyed oncologists, surgeons, and haematologists who see a variety of cancers regarding their views and usual practice re decision making models. The study has replicated earlier work by Cathy Charles, which is also being replicated in France allowing cross cultural comparisons.

Investigators: Heather Shepherd, Martin Tattersall, Phyllis Butow.

Online Faecal Occult Blood Test (FOBT) screening decision aid

An online version of the FOBT decision aid is available and pilot data collection due to commence. 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.

Investigators: Lyndal Trevena, Les Irwig, Alex Barratt

Tools for improving informed consent

This project is developing a computerised interactive program which will give information about colonoscopy, assess patient understanding, provide information in different formats where misunderstanding is present, and provide a record of understanding when consent is achieved. In initial steps, colonoscopy conversations are being audiotaped and analysed for content, qualitative research will explore the minimum information required for informed consent, and the ideal content of a consent program will be determined.

Investigators: Haryana Dhillon, Steven Clarke, Phyllis Butow, Martin Stockler

Which test is best?

This cluster-randomised trial is funded by Cancer Australia and has recruited 54 general practices in NSW and Victoria to measure the effect of an online tool which assesses colorectal cancer risk based on family history. The tool sends a report to the participants' GP who can then follow-up on the risk-appropriate screening recommendation as required. We have over 2,000 participants who have completed the tool already and will be assessing whether is improves risk-appropriate screening for colorectal cancer

Members involved: Lyndal Trevena, Danielle Mazza, Sunny Naicker

Funded by: Cancer Australia