Perceptions and recall of treatment for prostate cancer: A survey of two populations

Background: The complexity of prostate cancer care can impact on patient understanding and participation in shared decision-making. This study used a survey-based approach to investigate patients’ recall of their prostate cancer treatment, and more broadly, to understand the perceptions of patients and the general population of prostate cancer treatment. Method: The survey was completed by 236 patients with prostate cancer (PCa cohort) and 240 participants from the general population of Australia (GenPop cohort). Free-text comments from both cohorts were analysed using content analysis. The PCa cohort reported which treatments and image-guidance related procedures they had received. These patient-reports were compared to medical records and analysed using proportion agreement, kappa statistics and regression analysis. Results: 135 (57%) PCa and 99 (41%) GenPop respondents provided at least one comment. Five major themes were identified by both cohorts: sharing experiences of treatment; preferences insights and reflections; mindsets; general commentary on the survey; and factors missing from the survey. There was overall good treatment recall amongst the PCa cohort, with proportions of correct recall ranging from 97.3% for chemotherapy to 66.8% for hormone therapy. There was a tendency for younger patients (<70 years old) to recall their hormone treatment more correctly. Conclusion: Participant comments suggest the complexity of prostate cancer diagnosis and treatment, and the varying perceptions and experiences of participants with prostate cancer. Patients’ recall overall was good for both treatment and image-guidance related procedures/approaches, however the poorer recall of hormone therapy requires further investigation.