Oral Presentation Joint 2016 COSA and ANZBCTG Annual Scientific Meeting

Towards the development of a patient decision aid for women with ductal carcinoma in situ of the breast. (#124)

Claudia Rutherford , Andrew Spillane , Miriam Boxer , Joan McPherson , Zoe Winters , Rebecca Mercieca-Bebber , Margaret-Ann Tait , Madeleine King

Aims Ductal carcinoma in situ (DCIS) is a precursor to invasive breast cancer. Treatment aims to eliminate progression to invasive disease. 10-year survival is excellent across treatments, therefore patient values and preferences are important considerations in shared decision-making (SDM). A decision aid (DA) could facilitate SDM. We document the background processes involved in development of a DA that meets users’ needs and is likely to be implemented into practice.

Methods To develop a DA we undertook: (1) a systematic literature review to identify clinical practice guidelines (CPGs) for management of DCIS and clinical and patient-reported outcome (PRO) evidence; and (2) qualitative research to determine the information needs of women with DCIS and treating clinicians, how they prefer this information to be presented, and clinicians’ attitudes towards and barriers to using a DA.

Results We found variation between CPG recommendations (n=31) for management of DCIS, and that PRO evidence rarely informs treatment decision-making. Information regarding survival, recurrence/invasive disease rates, morbidity, and side effects of available treatments were collated, however evidence about PROs is limited and short/long-term PRO differences between treatments is lacking. Women with DCIS (n=24) want up-to-date and individualised DCIS-specific information, to be: informed about all treatment options, prepared for likely and possible side effects of treatment (e.g. quality of life, pain, fatigue, body image), and involved in SDM. Clinicians (n=30) identified a need for DCIS-specific information and the important role of breast care nurses (BCNs) in providing information and facilitating SDM, but acknowledged that BCNs often lack adequate training in SDM or meet patients after decisions are made. Clinicians support patient involvement in decision-making and a web-based interactive DA to facilitate SDM.

Conclusions A DCIS DA must meet the information needs of DCIS patients and their managing clinicians, contain up-to-date evidence, and incorporate patient values and preferences in decision-making.