Development, Implementation and Evaluation of an Information Resource for women who may choose breast reconstruction following mastectomy
Supervisors: Kate White, Christobel Saunders, Phyllis Butow & Tony Connell
A significant proportion of women diagnosed with breast cancer in Australia still require mastectomy as the principlal surgical treatment for breast cancer. The overall proportion of women who undergo breast reconstruction in Australia is relatively low and variable across the nation, with the average reported estimate being approximately 20% of those women requiring mastectomy. Decision making about breast reconstruction is multi-faceted and often undertaken within the context of a breast cancer diagnosis. All of these factors impact on the woman’s ability to retain, collate and process information required to make breast reconstruction treatment decisions. Increasingly, women are seeking more information about their breast treatment options.
- Develop a breast reconstruction information resource for women considering breast reconstruction following mastectomy
- Develop and pilot an evaluation framework for the information resource.
Evaluation research utilising a collaborative framework has guided this study. The study has three phases.
Phase One: Exploration of women’s breast reconstruction decision making experiences and information needs. Phase One of the study involved focus group interviews undertaken with a total of 36 women who had undertaken differing types of breast reconstruction. A semi-structured interview schedule was utilized to explore women’s breast reconstruction decision making experience, identify what information women received about breast reconstruction, and identify women’s information needs throughout their breast reconstruction experience.
Phase Two: Development of the information resource. Collaboration with key stakeholders is a critical component of the study. The study is a collaborative project with Breast Cancer Network Australia (BCNA) and the National Breast & Ovarian Cancer Centre. A project advisory committee of key stakeholders from across Australia has been established (including Breast Surgeons, Plastic/Reconstructive Surgeons, Breast Care Nurses, national peak body representatives, psychologists, nurse researchers and most importantly consumers). The role of the project advisory committee members is to regularly review drafts of the information resource and provide feedback contributing to its development.
Drawing on phase one findings, a detailed literature review of available evidence, analysis of current national information resources, and regular project advisory committee review has been undertaken. A website and written booklet has been developed detailing the different types of breast reconstruction, external factors that can influence women’s options for breast reconstruction, and practical information regarding preparation and postoperative recovery, with a focus on shared decision making with the woman’s multidisciplinary health care team.
Phase Three: Pilot Evaluation of the Resource. An evaluation framework for testing the resource has been refined for pilot testing in this phase. The pilot evaluation will be undertaken by women who have, and have not, undertaken breast reconstruction. The evaluation will assess the suitability of content, presentation, clarity, and usefulness of the information.
It is anticipated this information resource will fill a gap by providing an informative resource for all australian women considering breast reconstruction following mastectomy.