IMPROVER (Involving Men with Prostate Cancer in Engaged Research): Assessing Patient Experience With Testing,...

Area of Science:

• Urology
• Oncology
• Patient Experience Research

Background:

• Limited understanding of patient experiences with prostate cancer testing for diagnosis and surveillance.
• Need to explore lived experiences and unmet needs in early detection, diagnosis, and monitoring (active surveillance).

Purpose of the Study:

• Collaborate with patients and clinicians to understand experiences with prostate cancer testing.
• Identify challenges and unmet needs in prostate cancer detection, diagnosis, and monitoring.

Main Methods:

• Conducted focus groups with patients (n=20) and healthcare professionals (n=16).
• Developed an online questionnaire based on focus group findings for broader dissemination.
• Collected 1138 analyzable responses from individuals tested for prostate cancer in Europe and the US.

Main Results:

• Nearly one-third of individuals reported minimal prior knowledge of prostate cancer.
• Written information significantly improved patient understanding; 91% of uninformed individuals received no written materials.
• Prostate biopsy showed higher dissatisfaction (12%) compared to other tests (PSA, DRE, mpMRI).
• Test satisfaction decreased for repeated surveillance use compared to initial diagnosis, particularly for PSA tests.

Conclusions:

• Emphasize the need for increased public awareness and education on prostate cancer.
• Advocate for clear, accessible written information for patients at the start of their diagnostic journey.
• Call for further research into less invasive testing alternatives, especially for surveillance populations.