Men with a family history of prostate cancer (PCa) or a pathogenic germline variant (PGV) face increased PCa risk. However, structured PCa early detection and insights into the experiences of affected men remain limited. This qualitative analysis explored (i) why men with familial or genetic PCa risk attended a risk-adapted prevention clinic, (ii) which elements they found helpful, and (iii) how early detection services could be tailored to their needs.
This study was part of the psychosocial mixed-methods study ProFam-Psych, run alongside the ProFam-Risk prevention clinic. Semi-structured interviews were conducted in a subgroup (13/86 study participants). The clinic offered PSA testing, mpMRI, genetic counselling and panel testing followed by risk-adapted recommendations. Participants were men without PCa who had a family history or previously detected PGV, and men with PCa who had a family history. Participants were selected using maximum variation sampling. Data were analysed by two researchers using Kuckartz's qualitative content analysis.
Seven motivators were identified: (1) clarify risk/PGV status, (2) information needs, (3) benefits for the family, (4) support others, (5) external recommendation, (6) access to structured screening, and (7) preventive recommendations. Participants with a family history were primarily motivated by (1) and (3), men with PGVs by (5) and (6), with (6) and (7) unique to this group. Perceptions of elements most helpful to participants varied, but the integrated setting with time for questions, clear guidance, and a reliable point of contact was valued. Suggested improvements were mostly organisational, including reminder systems to support long-term adherence.
Interdisciplinary early detection for PCa was accepted by participants, with motivators such as screening access and information needs highlighting the need for the implementation of structured screening programs for high-risk men.
Results may inform future outreach efforts and design of screening strategies for familial and genetic PCa risk.
DRKS.de, DRKS00032350. Prospectively registered with the German Clinical Trials Register (DRKS) on 14 September, 2023 SELECTED HEADING: Patient and User Perspectives and Characteristics.
Patient education and counseling. 2026 Mar 21 [Epub ahead of print]
Maike K Klett, Ilayda Balkan, Jale Lakes, Peter Albers, Kati Hiltrop, Jannika Rother, Matthias Boschheidgen, Gerald Antoch, Silke Redler, Dagmar Wieczorek, Tanja Fehm, Bernadette Anna Sophia Jaeger, Ulrike Dinger, André Karger
Clinical Institute of Psychosomatic Medicine and Psychotherapy, Medical Faculty and University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Düsseldorf, Germany; Center for Integrated Oncology Aachen Bonn Cologne Düsseldorf (CIO ABCD), Germany. Electronic address: ., Clinical Institute of Psychosomatic Medicine and Psychotherapy, Medical Faculty and University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Düsseldorf, Germany., Center for Integrated Oncology Aachen Bonn Cologne Düsseldorf (CIO ABCD), Germany; Department of Urology, Medical Faculty and University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Düsseldorf, Germany., Center for Integrated Oncology Aachen Bonn Cologne Düsseldorf (CIO ABCD), Germany; Department of Urology, Medical Faculty and University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Düsseldorf, Germany; Division of Personalized Early Detection of Prostate Cancer, German Cancer Research Center (DKFZ), Heidelberg, Germany., University of Cologne, Faculty of Medicine and University Hospital Cologne, Institute of Medical Sociology, Health Services Research and Rehabilitation Science, Chair of Health Services Research, Cologne, Germany., Center for Integrated Oncology Aachen Bonn Cologne Düsseldorf (CIO ABCD), Germany; Department of Diagnostic and Interventional Radiology, Medical Faculty and University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Düsseldorf, Germany., Center for Integrated Oncology Aachen Bonn Cologne Düsseldorf (CIO ABCD), Germany; Institute of Human Genetics, Medical Faculty and University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Düsseldorf, Germany., Center for Integrated Oncology Aachen Bonn Cologne Düsseldorf (CIO ABCD), Germany; Department of Gynaecology and Obstetrics, Medical Faculty and University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Düsseldorf, Germany., Clinical Institute of Psychosomatic Medicine and Psychotherapy, Medical Faculty and University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Düsseldorf, Germany; Center for Integrated Oncology Aachen Bonn Cologne Düsseldorf (CIO ABCD), Germany; Department of Psychosomatic Medicine and Psychotherapy, LVR Hospital Düsseldorf, Medical Faculty, Heinrich Heine University Düsseldorf, Düsseldorf, Germany., Clinical Institute of Psychosomatic Medicine and Psychotherapy, Medical Faculty and University Hospital Düsseldorf, Heinrich-Heine-University Düsseldorf, Düsseldorf, Germany; Center for Integrated Oncology Aachen Bonn Cologne Düsseldorf (CIO ABCD), Germany.