Recruitment for this project has now been successfully completed.

About the project

This study investigated the use of and satisfaction with information and support following the primary treatment of breast cancer by replicating a study done in 2002.

What were the results of this project?

Register4 was able to provide  206 participants to this study. Of participants, 64% lived in major cities, 19% resided in inner regional Australia and the remaining 12% lived in outer regional, remote or very remote areas of Australia and this is representative of Australian Bureau of Statistics geographical data.

Compared to the original study, completed in 2002, we found that the top four information issues important to women were the same in 2002 and 2013.  These issues included information about recognising a recurrence, chances of cure, risk to family of breast cancer and information about Tamoxifen and anti-oestrogen drugs.  For many of the issues important to women, only one-third of women reported receiving information about these issues in the previous 6 months.

We found that women used a variety of sources of information, but the most frequently used source of information was the internet (70%, n=229).  Other frequently used sources of information included the surgeon (58%) and the cancer specialist (56%).  Not surprisingly, women are using the Internet at a statistically significantly higher rate in 2013 compared to 2002.

The highest levels of satisfaction with information were for information received from face-to-face sources as opposed to online sources.  Sources of information that women rated moderately or extremely useful include the Cancer Helpline (91%), the breast care nurse (89%), the surgeon (85%), the cancer specialist (85%), and the complementary or alternative therapist (85%).

The most frequently used sources of support in the previous 6 months were from family (81%) and friends (80%), followed by the GP and surgeon (both 61%).  In terms of satisfaction with support, women were generally very satisfied with the support they had received.  The highest levels of satisfaction were for the complementary and alternative therapist (89%), the breast cancer support group (86%), the psychiatrist or psychologist (85%) and the breast care nurse (83%).  In the free text responses, women clearly highly regarded breast cancer organisations such as the Breast Cancer Network Australia (BCNA) and the Cancer Council as helpful sources of support.

Geographical comparisons reveal women in outer regional, remote and very remote areas reported receiving information at a lower rate in seven out of the 13 information areas measured. However, this difference was not statistically significant.The breast care nurse was reported as a source of support at a statistically significantly higher percentage in the outer regional, remote and very remote areas (41%) compared to the major cities (22%) and inner regional areas (27%).

The researcher: Professor Ann Gardner

Professor Anne Gardner joined the School of Nursing, Midwifery and Paramedicine at the Australian Catholic University on the Canberra Campus in late 2011 as Professor of Nursing with a research intensive focus. Anne came from Townsville where she spent 4 years as the inaugural Professor of Tropical Health at James Cook University. This was a joint appointment between the university and Townsville Health Service District. Anne has a background in critical care nursing, nurse education and clinical research. She has a PhD in Epidemiology and Population Health from the ANU. Anne's clinical research interests focus primarily on infection control and wound care. Anne is especially well known nationally and internationally for her collaborative research into nurse practitioner scope of practice.

Who was the project for?

This project was for woman, living in Australia, aged 18 years or older who had been diagnosed with breast cancer and had completed treatment between 6 and 30 months ago.

What did this project involve?

Participants were asked to complete a one-off survey which took 20 - 30 minutes to complete. The questions related to the information and support women received during and after their treatment for breast cancer. One of the questions asked for your address so that the researcher could categorise place of residence in one of 5 geographical categories; Bureau of Statistic indication of remoteness.

Where was the project conducted?

The survey was conducted online and was run through Australian Catholic University.

What outcomes were achieved as a result of this project?

Results from this study have been used to develop two further studies investigating the role of the breast care nurse in the provision of information and support to Australian women with breast cancer. Recruitment for the final study will once again involve women with a diagnosis of breast cancer and is likely to begin in March/April 2014. A paper has been written to inform clinicians about the results of this first study and this paper has been submitted to an international health journal and is awaiting approval.

Researchers at Australian Catholic University would like to extend a very warm thank you to all the participants who contributed to our study. We would also like to sincerely thank Register4 for their assistance with recruitment for this research study.