Purpose: Women with breast cancer have indicated a desire for more information about their disease, in part, to be involved in making treatment decisions. Importantly, patients who are involved in treatment decision making (TDM) are more likely to have their preferences incorporated in the treatment decision. Despite patients' desires to be involved in TDM and the ethical and medical importance of this involvement, researchers have reported that patients' actual experiences in making decisions did not match their preferences. The study objectives are to 1) understand the concept of involvement in TDM from the perspectives of women with early stage breast cancer (ESBC); 2) identify any stages or steps of DM used by women and their physicians during the treatment consultation(s); and 3) identify the behaviors of physicians that facilitate or impede women's involvement in TDM.

Methods: A qualitative approach with interviews and video-stimulated recall was used. In Part 1, interviews with 19 women with ESBC were held to develop the concept of involvement in TDM and the decision making process used by these women. In Part 2, treatment consultations of a second group of 20 women were digitally videotaped. Several days later, these women and their physicians (separately) viewed their own consultation to describe their DM process and identify the behaviors that facilitated or inhibited involvement in DM. All interviews were taped, transcribed verbatim and analyzed.

Results: Part 1: Most women wanted high quality information soon after diagnosis but many felt that they were left in a void until the surgical or even the medical oncology visit. Most women thought they were heavily involved in a TDM process before, during and after the consultation. The results of the Part 2 pilot testing indicated that videotaping the consultation was feasible. Women liked the opportunity to review information presented in the consultation. They identified how they were involved in the DM process and different ways that the oncologist facilitated or inhibited their involvement.

Conclusions: This study has identified women's perceptions of their involvement in the TDM process, how treatment decisions were made and physicians' behaviors that enhanced or impeded women's involvement in TDM. This information will be useful to patients and physicians for promoting patient involvement in TDM.