When women are first diagnosed with breast cancer, they often face the possibility of surgery before knowing about the overall plan for treatment. Patients and healthcare professionals from St. Mary’s Hospital identified this stage of the cancer experience where more information about other patients’ experiences would be very helpful – in addition to the usual biomedical and clinical information.
They highlighted the importance of providing information on a range of topics relevant to patients’ clinical situations and to include issues frequently not discussed with healthcare teams or available online, e.g.: sexuality, the challenging messaging around DCIS (ductal carcinoma in situ), unexpected issues such as having unclear margins after a lumpectomy, and coping mechanisms that may, for some, include the use of humour in managing everyday life with cancer.
We have worked with patients, clinicians and informatics experts to develop a mobile app to help women explore an existing collection of narratives, based on previous research, to find information relevant to their personal situation and preferences around surgery. Other women’s experiences, choices, reflections, perspectives on the disadvantages and advantages of various options are explained in their own words, e.g.: what it felt like to see the scars after a mastectomy; how the loss of a breast affected intimacy; and how women communicated preferences in meetings with their doctor. We believe that this kind of resource, based on patients’ real life experiences and perspectives, is an excellent complement to the large volume of biomedical information that already exists to help women make healthcare decisions.
Pilot testing and the final design of the app is in process, in collaboration with patients and clinicians. This app can be used on phones and other computer devices and we are aiming to make it publicly available in the summer of 2018.
The Quebec Breast Cancer Foundation is proud to support the development of this app.