Introduction: Genitourinary Rhabdomyosarcoma (GU-RMS) often requires multimodal therapy including radiation, chemotherapy, and radical surgery to maximize disease control. The long-term effects of the disease and associated treatments are unclear. We sought to investigate the long-term genitourinary quality of life (QoL) for adult survivors of pediatric GU-RMS, including urinary function, fertility, sexual function, and associated QoL. Methods: In total, 14 (43% female, median age = 32.5 years [IQR = 23.25 – 39.25], 2 bladder, 1 cervical, 5 paratesticular, 3 vaginal, 2 pelvic, 1 prostate RMS) agreed to interview about impact of childhood GU-RMS treatment on current QoL. A semi-structured interview guide based on a Long-Term Service and Support QoL conception model (LTSS HRQOL), and grounded in GU-RMS experiences was created. Categories included urinary function, sexual function, general health, mental health, and social dynamics. Two coders independently coded using thematic analysis. Results: Three themes specific to genitourinary functions emerged: fertility preservation, sexual health communication with partners, and education of GU-RMS impact during and after treatment. Participants discussed an interest in better understanding fertility preservation options, and post-treatment effects on their anatomy. They noted that knowledge of their ability to conceive impacted their desire to have children. Participants also had challenges related to if, when or how to communicate details of their sexual health with a partner. Across these themes, participants reported insufficient knowledge regarding GU-RMS treatment and its impact on current and future functions. Specific areas of concern were anatomical changes, fertility and pregnancy expectations, and survivorship. Conclusions: For survivors of GU-RMS, significant urinary and sexual function concerns would be important to address with long-term survivorship. Clinicians can potentially improve survivors’ QoL by educating on expectations for treatment, fertility preservation options, and long-term effects of treatment, at relevant stages in a patient’s life. SOURCE OF Funding: Internal
