Enhancing Involvement in Treatment Decision Making by Women with Breast Cancer

Women with breast cancer desire more information about their disease, in part, to be involved in making treatment decisions (TDs). Patient involvement responds to patients desires for autonomy and addresses ethical concerns about rights to make TDs. However, several researchers have reported that patients actual experiences in TDM did not match their preferences. The study objectives are to 1) understand the meaning of involvement in TDM from the perspectives of women with early stage breast cancer (ESBC); 2) identify stages/ steps of TDM used by women and their physicians during the treatment consultation(s); and 3) identify the behaviors of women and physicians that facilitate or impede womens involvement in TDM. Methods: A qualitative approach with interviews and video-stimulated recall was used. In Phase 1, interviews with 19 women with ESBC were held to understand the concept of involvement in TDM. In Phase 2, surgical (n=6) or medical oncology (MO) consultations (n=15) with new ESBC patients were videotaped. Subsequently, women and medical oncologists or surgeons separately viewed their consultation. Interviews were taped, transcribed, and analyzed. Findings: Phase 1: Most women wanted high quality information soon after diagnosis but many felt isolated and uninformed until the surgical or the MO visit. In Phase2, most women described an iterative TDM process where they made a preliminary treatment decision prior to the consultation, often based upon experiences of family or friends. Clinicians described many behaviours used to facilitate the patients involvement in TDM. While women reported some of these behaviours, they also reported fewer or different behaviours than clinicians. Significance: The information from this study will be useful to patients and physicians for promoting patient involvement. It can be used to develop and evaluate training programs for both physicians and patients to involve patients with cancer in decisions about their care.