Abstract
Different patients want to take different roles in the treatment decision-making process; these roles can be classified as passive, collaborative, and active. The aim of this study was to investigate the correlation between decision-making preferences among patients with prostate cancer and personal, disease-related, and structural factors. In four survey studies, we asked 7169 prostate cancer patients about their decision-making preferences using the Control Preferences Scale (CPS) and collected clinical, psychological, and quality-of-life measures. Most patients (62.2%) preferred collaborative decision-making, while 2322 (32.4%) preferred an active role, and only 391 (5.5%) preferred a passive role. Age (p < 0.001), data collection mode (p < 0.001), peer-to-peer support (p = 0.018), treatment status (p < 0.001), performed or planned radical prostatectomy (p < 0.001), metastatic disease (p = 0.001), and quality of life (p < 0.001) showed significant associations with patients’ preferred decision-making roles. Oncologic risk group, anxiety, and depression were not significant in the model. In particular, younger prostate cancer patients with higher quality of life completing an online survey want to play a more active role in treatment decision-making. Before treatment has started, patients tend to prefer collaborative decision-making. Few prostate cancer patients in Germany prefer a passive role. These patients are mostly older patients, patients with a metastatic disease, and patients who have opted for prostatectomy. Whether this finding reflects a generational effect or a tendency by age group and disease phase should be investigated. Further research is also needed to describe the causalities of these relationships. The CPS offers valuable information for personal counselling and should be applied in clinical routine. In a large group of patients with prostate cancer, we found that there is a strong desire for joint decision-making with the physician before the actual treatment. Especially younger men, men with active online behaviour, and men with a high quality of life want to be actively involved in therapy decision-making processes.
Highlights
Adequate involvement of patients in treatment decisionmaking is an important goal of personalized medical care to offer each patient his or her desired role in the treatment course
We investigated in the association between decision-making preferences and data collection mode, participation in self-help groups, treatment status, radical prostatectomy, Gleason score, metastases, oncologic risk group, age, education, depression, anxiety, and quality of life
We found significant associations between active decision-making preferences and young age, high education, online data collection mode, peer-to-peer support users, data collection before treatment, a not performed or planned radical prostatectomy, non-metastatic diseases, and high quality of life
Summary
Adequate involvement of patients in treatment decisionmaking is an important goal of personalized medical care to offer each patient his or her desired role in the treatment course. In a German cohort study, 3312 adults older than 64 years were recruited by their general practitioners in the course of a regular health check-up. Asked for their individual treatment decision-making preferences, 46% preferred an active role, 30% preferred a collaborative role, and 24% preferred a passive role. In a US-American representative sample, 2383 adults without a history of cancer were confronted with a hypothetical cancer diagnosis and a moderate chance of survival Asked for their treatment decision-making preferences, 8% preferred a passive role, 48% preferred a collaborative role, and 44% preferred an active role [7]. Respondents with higher education levels reported a higher preference for having a more active role in decision-making [7]
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