Women’s perceptions of their involvement in treatment decision making for early stage breast cancer

PurposeThis study aimed to describe the perceptions of women with early stage breast cancer regarding their involvement in treatment decision making (TDM).MethodsEligible women with early stage breast cancer were recruited immediately after their first consultation with a specialist. Semistructured personal interviews were held prior to treatment. Interviews were audiotaped, transcribed, and analyzed.ResultsNineteen women with early stage breast cancer considering surgery (n = 6) or adjuvant therapy (n = 13) participated. Women described being involved in various stages of TDM and interacting with informal networks and specialists. Women’s descriptions suggest that (1) the concept of involvement in TDM may have a broader meaning for patients than strictly their decisional role and (2) inclusion of significant others in TDM contributes to the patient’s sense of involvement.ConclusionsConceptualization and measurement of patient involvement in TDM have often been framed within the context of the medical encounter and the patient’s perceived or actual role in this process. Our findings raise questions about what involvement means to patients with early stage breast cancer and suggest that the focus on patient involvement in TDM within the medical encounter may be too narrow to capture the meaning of involvement from the patient’s perspective.