Prostate cancer is the most common non-skin cancer diagnosed among men and the second leading cause of cancer deaths among men in the United States [1
]. Unfortunately, there are no optimal treatment guidelines for prostate cancer to improve survival without the risk of diminishing quality of life (QOL) [2
]. Although several treatment options are available, they all have multiple adverse side effects – including urinary and bowel problems, hormonal symptoms, and sexual problems – that may result in psychological distress and decreased QOL [3
]. The burden of disease is greatest among African American men, who have the highest incidence and are at least twice as likely to die from prostate cancer compared to Caucasians [1
]. African American prostate cancer survivors also report poorer QOL compared to Caucasians [5
Due to the complex considerations of prostate cancer treatment, patients have been encouraged to participate in informed treatment decision-making (TDM) [8
]. The informed decision-making model focuses on the patient’s perspective, in which patients receive all pertinent information, understand the risks and benefits of treatment options, and make decisions based on personal preference [9
]. Research has shown that patients vary in their preference for involvement in medical decision-making [10
], ranging from desiring active involvement [12
] to preferring passive involvement where the physician is the primary decision maker [14
]. Numerous studies have assessed medical decision-making preferences among a variety of cancer survivors [12
]. In studies of TDM among prostate cancer survivors, most patients prefer a collaborative or active role in TDM [12
]. Only one study reported that most prostate cancer survivors preferred a passive role [14
]. These study samples predominantly consisted of Caucasian men.
Research primarily among breast cancer survivors has found that taking an active role in TDM is associated with less depression and anxiety [29
], greater satisfaction with care and treatment choice [17
], and better QOL [30
]. There are limited data on TDM and QOL among prostate cancer patients. Two studies have assessed TDM preference or involvement and subsequent QOL among Caucasian prostate cancer survivors. In an Australian cohort, 11% of whom were prostate cancer survivors, those who reported a collaborative role in TDM reported better satisfaction with the consultation, information about treatment, and emotional support received, compared to those who reported a passive or active role in TDM [17
]. However, a US study of predominately Caucasian prostate cancer survivors found no association between TDM and subsequent QOL [18
]. To our knowledge, this relationship has not been studied among African American prostate cancer survivors.
A few studies have assessed general medical decision-making among African American men [19
]. One study of healthy men and women found African Americans were more likely to prefer passive medical decision-making compared to Caucasians [34
]. However, other studies conducted with only healthy African American men reported that most preferred a collaborative or active role [32
]. For example, Williams and colleagues (2008) conducted a study among healthy African American men considering prostate cancer screening; most preferred collaborative (57%) and active (36%) decision-making [33
]. Keating and colleagues (2010) reported that African American colorectal and lung cancer survivors preferred to be active or collaborative in medical decision-making [19
]. These discrepant findings may be due to gender and racial differences in the study population, and also respondents’ health status – cancer survivors versus a healthy population.
Little is known regarding the relationship between TDM and QOL among African American prostate cancer survivors. The current study was designed to address these gaps in knowledge by assessing self-reported TDM among a sample of African American prostate cancer patients and the association between TDM and QOL. The study addresses the following research questions:
- To what extent do African American prostate cancer survivors report their preferences and involvement in treatment decision-making?
- Is self-reported preference and involvement in treatment decision-making associated with prostate cancer-specific quality of life among African American prostate cancer survivors?