Communication, perception, and use of personalized side-effect risks in prostate cancer treatment-decision making: An observational and interview study

• Published in: Patient education and counseling 2022-08, Vol.105 (8), p.2731-2739
• Main Authors: Vromans, Ruben D., Tillier, Corinne N., Pauws, Steffen C., van der Poel, Henk G., van de Poll-Franse, Lonneke V., Krahmer, Emiel J.
• Format: Article
• Language: English
• Subjects: Information provision; Personalization; Prostate cancer; Risk communication; Shared decision-making; Treatment side-effects; Urinary incontinence
• ISSN: 0738-3991; 1873-5134
• DOI: 10.1016/j.pec.2022.04.017

We investigated how healthcare professionals (HPs) communicate personalized risks of treatment side-effects to patients with localized prostate cancer during consultations, and explored how these patients perceive and use such risks during treatment decision-making. Patient consultations with nurse practitioners and urologists discussing personalized risks of urinary incontinence after prostatectomy were audiotaped, transcribed, and coded. Patients (n = 27) were then interviewed to explore their perceptions and use of personalized side-effect risks. HPs explained personalized risks by discussing risk factors, which was appreciated and recalled by patients. Personalized risks were typically communicated both numerically and verbally (70%). When using numbers, HPs always used percentages, but rarely used natural frequencies (14%). Uncertainty was disclosed in only 34% of consultations. One-third of patients used personalized risks in their treatment decision-making by either switching to another treatment or sticking to their initial preference. Patients value and use personalized side-effect risks during treatment decision-making. Clearly explaining the relationship between risk factors and personalized risk estimates may help patients understand and recall those. Practice implications HPs should not only give patients specific and precise numerical risk information, but should also put effort in explaining how the personalized side-effect risks are determined. •Healthcare professionals (HPs) typically used percentages for communicating personalized risks to patients.•HPs explained personalized risks by discussing risk factors, which was appreciated and recalled by patients.•Patients value and may use personalized side-effect risks during treatment decision-making.•HPs are encouraged to put effort in explaining how personalized risks are determined.