Purpose: Shared decision making in medicine depends on an accurate understanding of patient values and goals for treatment. Assessments of patient goals for localized prostate cancer treatment typically include well-defined, clinically derived attributes, e.g., impotence, incontinence. Others have identified a wide range of individual concerns that are difficult to integrate in structured approaches to decision making. In this qualitative study, we sought to 1) describe an expanded range of values and goals for prostate cancer treatment based on patient experience and 2) determine whether these concerns can be conceptualized in a usable framework for understanding and measuring patient preferences.

Methods: We recruited 61 men diagnosed with localized prostate cancer from Department of Veterans Affairs urology clinics, and consented them to participate in thirteen focus groups. Group composition was homogeneous in primary treatment (i.e., radical prostatectomy, brachytherapy, external beam radiation therapy, watchful waiting). Two experienced moderators, matched to participants by gender and ethnicity, conducted the groups following a structured outline. Following the groups, twenty individual interviews were conducted to explore in detail material raised in the group discussions. Transcripts were content coded using Nvivo software to manage the analysis.

Results: Content analysis of the transcripts revealed well-identified concerns such as sexual and urinary function. In addition, the men described considering the psychological and social impact of treatment in making their decisions. Specific dimensions included emotions, self-esteem, relationships, and responsibilities. The psychological, social, and functional concerns were discussed as both overlapping and independent considerations that contributed to complex trade offs in treatment decision-making. For example, the value of avoiding sexual dysfunction was discussed both as an independent functional goal and discussed in the context of its perceived impact on self-esteem, relationships, and responsibilities.

Conclusions: While findings are consistent with clinically based frameworks for understanding patient preferences, this patient-based approach suggests that psychological and social considerations overlap with well-defined attributes in prostate cancer treatment decisions. This work points to the need to develop theoretical models and measurement systems that include psychological and social context in understanding patient goals and values.