The group (i) highly valued genuine intent and relationship building as elements to combat tokenism; (ii) noted that early genuine attempts at engagement may superficially resemble tokenism as researchers build enduring and trusting relationships with patient/community partners and (iii) emphasized the importance of seeking and utilizing patient experiences throughout research. These observations may contribute to more formal methods to help researchers (and reviewers) evaluate where engagement processes sit along the 'genuine-token' continuum.
Objective To describe prostate cancer treatment decision making, focusing on knowledge and attitudes toward observation, known as watchful waiting (WW) or active surveillance (AS), and reasons for not choosing WW/AS. Methods Semistructured in-person interviews were conducted with 21 men (14 black; 7 white) with recently diagnosed localized prostate cancer. Results All cancers were detected by prostate-specific antigen screening; 14 men had low-risk disease. Nineteen chose surgery or radiation treatment. The majority wanted to “get rid of” or “cure” the cancer by undergoing aggressive therapy, even with awareness of the potential for significant side effects. Most men seemed unaware of the uncertainty/controversies that aggressive treatment may not cure their cancer or improve their survival. Limited knowledge about WW/AS was common, and few remembered WW/AS being presented as a viable option. Rather, many men perceived it as “doing nothing.” Some men, who initially were inclined toward WW/AS, yielded to pressure from family, physicians, or both to choose aggressive treatment. Lack of physician support was a significant barrier to WW/AS. Conclusions The observational strategy (WW/AS) was not viewed as a reasonable approach, even for those with low-risk cancer. The desire for aggressive therapy may reflect the complex psychology associated with receiving a diagnosis of cancer and the limited supportive counseling received. Further efforts to better understand and educate patients and physicians may help men make informed and appropriate treatment decisions to maximize quality of life without compromising survival.
Objective In the context of scientific uncertainty, treatment choices for localized prostate cancer vary, but reasons for this variation are unclear. We explored how black and white American men made their treatment decision. Methods Guided by conceptual model, we conducted semistructured interviews of 21 American (14 black and 7 white) men with recently diagnosed localized prostate cancer. Results Physician recommendation was very important in the treatment decision, but patient self-perception/values and attitudes/beliefs about prostate cancer were also influential. Patients who chose surgery believed it offered the best chance of cure and were more concerned that the cancer might spread if not surgically removed. Patients who chose radiation therapy believed it offered equal efficacy of cure but fewer side effects than surgery. Fear of future consequences was the most common reason to reject watchful waiting. Anecdotal experiences of family and friends were also important, especially in deciding “what not to do.” The new technology of robotic-assisted prostatectomy provided optimism for men who wanted surgery but feared morbidity associated with traditional open surgery. Few men seemed aware that treatment did not guarantee improved survival. Conclusion Most men reported making “the best choice for me” by taking into account medical information and personal factors. Perceptions of treatment efficacy and side effects, which derived mainly from physicians’ descriptions and/or anecdotal experiences of family and friends, were the most influential factors in men’s treatment decision. By understanding factors that influence patients’ treatment decisions, clinicians may be more sensitive to individual patients’ preferences/ concerns and provide more patient-centered care.
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