How should person-centred care be implemented for women with DCIS?

Up to 25% of breast abnormalities are ductal carcinoma in situ (DCIS). DCIS does not spread to other parts of the body, and most cases do not become invasive breast cancer. However, there is no test to determine if DCIS will become invasive cancer. Therefore most women have surgery to remove the abnormality or the breast where it was found, with or without radiation or hormone therapy. Women treated for DCIS, worldwide and in Canada, said that they were not satisfied with the information they had received, were not offered a choice of treatment options or given enough time to consider them, would have preferred less aggressive treatment and were anxious long after treatment. There is an urgent need to improve DCIS care from the time of diagnosis through treatment, follow-up and survivorship. Person-centred care (PCC) involves patients in their own care. PCC improves patient knowledge, interaction with physicians, satisfaction with care received, physical health and quality of life. In a previous study, Dr Anna Gagliardi and her team created a list of PCC strategies that had been used in other research. Pre appointment question lists, summaries of the risks and benefits of different treatment options, checklists for monitoring treatment side effects and long-term self-management plans are a few examples of PCC strategies. Research shows that PCC is more likely to take place if such strategies are available and if physicians are trained and encouraged to offer them. No research in Canada or elsewhere has examined if and how physicians or the hospitals where they work provide women diagnosed with DCIS with PCC. This study will build on researchers’ previous research on PCC and quality of care for women with breast cancer. First, researchers will show groups of women in 5 provinces the list of PCC strategies they created, and ask them to identify the PCC strategies they prefer and to suggest additional PCC strategies. Then the research team will interview physicians from across Canada who care for women with DCIS (e.g. general surgeons, surgical oncologists, radiation oncologists and medical oncologists) to identify the information, training or other support they need to help them offer PCC to women diagnosed with DCIS. Researchers will then interview department managers from hospitals in 5 provinces to identify if and how they support physicians to provide PCC for DCIS. They will then involve patients, physicians, hospital managers, health system leaders and government policymakers to issue recommendations for the PCC strategies (identified in a review of published research and in our interviews with patients, physicians and hospital managers) that should be routinely implemented by physicians and hospitals. This research will generate an expanded list of PCC strategies for women diagnosed with DCIS that can be tailored to their needs by physicians and hospitals. This research will help governments, hospitals and physicians to prioritize which PCC strategies to fund and use. Overall, knowledge generated by this research may promote more hospitals and physicians to use PCC strategies, which could improve the health care experiences and the health of Canadian women with DCIS. This research may be useful for other types of cancer for which treatment benefits and harms are uncertain. In future research, researchers will build on these findings by testing PCC strategies identified by this study to assess which are most effective.