Abstract Introduction Penile cancer is rare, but it can significantly impact the mental and sexual well-being of men and their partners. Besides the physical effects, men often face distress, a changed self-image and fear of being rejected sexually. Partners may find it hard to offer support without adequate guidance. Although there is a recognized need for sexual rehabilitation, structured support and reliable online information remain limited. To address these unmet needs, we developed a web-based psycho-educational platform to provide accessible and reliable information for men with penile cancer and their partners. Objective The aim of this study was to co-develop and optimize a psycho-educational platform that provides evidence-based, patient-oriented information and support resources to patients and their partners, with the goal of improving the quality of penile cancer care and facilitating communication between patients, partners and healthcare providers. Methods A modified Delphi procedure guided the platform’s development through multiple rounds of professional and experiential expert consultations. The interdisciplinary panel included urologists specialized in penile cancer care, onco-psychologists, sexologists, sex researchers, physiotherapists, general practitioners and patient representatives. We used iterative consensus rounds and controlled individual feedback to refine the prototype. The resulting pilot version was evaluated through one-time, in-person think-aloud interviews with men treated for penile cancer and, when available, their partners. Participants reviewed the platform while sharing their thoughts and preferences, providing feedback on clarity, comprehensiveness and acceptability. Interview transcripts were analysed using inductive content analysis to guide user-driven optimization. Results Ten think-aloud interviews were conducted with men, treated for penile cancer with various treatment types, and their partners joined in three interviews. Participants appreciated the reliability of the information, the sharing of patient experiences and the normalization of sexual and emotional concerns. Based on their feedback, the platform was optimized to (1) encourage patients to ask questions during consultations, (2) include additional information on postoperative care and sexual sensitivity, (3) highlight diverse ways to express intimacy beyond penetrative sex, and (4) increase visibility of available professional and peer support options. The final platform contains four main sections: medical and technical information, life beyond penile cancer, guidance for partners, and access to support. The platform is publicly accessible and includes written content, graphical illustrations, healthcare provider videos and patient quotes to promote engagement and comprehension. Conclusions This study shows the value of combining professional knowledge and personal experience in the development of supportive care resources for men with rare cancers. The resulting web-based platform addresses an important information and care gap by providing accessible, reliable and thorough guidance for both patients and partners. By capturing user feedback throughout development, the platform reflects the lived experiences and needs of those affected, promoting integrated and patient-centered psychosocial and sexual care. Disclosure No
Roumieux et al. (Mon,) studied this question.