Perspectives and Concerns on Late Effects Regarding Sexuality among Adolescents and Young Adults Treated for Testicular Germ Cell Tumor: The PRICELESS-Study-A Qualitative Study

Simple Summary Sexuality remains an unspoken topic in the consulting room regarding testicular germ cell tumor (TGCT) patients in the adolescent and young adult (AYA) age. Little is known about the perspectives and concerns of these patients regarding sexuality. The PRICELESS-study explored these perspectives and concerns through individual interviews with 13 AYA patients treated for TGCT. Interviews revealed seven interacting and interconnected themes: desire to have children, rediscovering sexuality, insecurity about sexual performance, acceptance of physical change, loss of masculinity, burden on relationship, and openness in discussing sexuality. TGCT patients face multiple changes (physical, emotional, relational, and sexual), followed by a difficult period of acceptance, after which a new phase of rediscovering sexuality appears. Insights from this study can help healthcare professionals understand the underlying mechanisms and help to define topics for instrument development to support discussing sexuality.Abstract This study aimed to explore perspectives and concerns regarding sexuality among adolescents and young adults (AYAs) possibly experiencing late effects after testicular germ cell tumor (TGCT) treatment. A qualitative study was performed in which semi-structured interviews were held with thirteen AYAs from a center of expertise for TGCT in the Netherlands. Data were analyzed using Braun and Clark's thematic analysis method. Seven interacting and interconnected themes were found: desire to have children, rediscovering sexuality, insecurity about sexual performance, acceptance of physical change, loss of masculinity, burden on relationship, and openness in discussing sexuality. Concerns about the desire to have children seem to play a significant role. In conclusion, TGCT patients face multiple changes (physical, emotional, relational, and sexual), followed by a difficult period of acceptance, after which a new phase of rediscovering sexuality appeared. These findings can help to make healthcare professionals aware of the underlying mechanisms and concerns about sexuality. Furthermore, insights can help to develop sexuality-themed items for a broader monitoring tool to structurally assess the late effects to support discussing sexuality.