Delivering the unexpected—Information needs for PSA screening from Men's perspective: A qualitative study

BACKGROUND: Making decisions about PSA screening tests is challenging, as it requires both knowledge of the possible benefits and harms of screening and an individual assessment of the patient's values. Our research explores how much and what information men perceive to be necessary with regard to screening for prostate cancer. OBJECTIVE: To explore men's information and associated needs for decision making in PSA testing. DESIGN: Qualitative interview study. SETTING AND PARTICIPANTS: We interviewed 32 men (aged 55‐69) about their decision making on PSA screening following counselling with a Decision Aid at their GP’s or urologist's practice in Germany. MAIN OUTCOME MEASURES: Men's expressed needs for decision making in PSA testing. METHODS: All interviews were transcribed verbatim and analysed by framework analysis. RESULTS: Comprehensive pre‐screening counselling is needed. For the men in our study, information about test (in)accuracy, the benefit‐harm balance and consequences of the test were relevant and surprising. Additional needs were for interpretation support, a take‐home summary and time for deliberation. For several men, their physician's attitude was of interest. After being well‐informed, most men felt empowered to make a preference‐based decision on their own. DISCUSSION: Men were surprised by what they learned, especially regarding the accuracy and possible harms of screening. There is large variation in the breadth and depth of information needed, and some controversy regarding the consequences of testing. CONCLUSION AND PATIENT CONTRIBUTION: A core set of information should be offered before men make their first PSA screening decision. Information about biopsy and associated side‐effects could follow in a short form, with details only on request. Knowledge about a high rate of false‐positive test results beforehand might help men handle a suspicious test result.