Long-Term Urinary and Sexual Outcomes in Pediatric Genitourinary Rhabdomyosarcoma Survivors: A Qualitative Study

Genitourinary rhabdomyosarcoma (GU-RMS) often requires multimodal therapy treatment including radiation, chemotherapy, and radical surgery for 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 for adult survivors of pediatric GU-RMS.

In total, 14 participants (43% female, median age = 32.5 years [IQR = 23.25-39.25], range = 20-52 years, 2 bladder, 1 cervical, 5 paratesticular, 3 vaginal, 2 pelvic, and 1 prostate RMS) agreed to interview about impact of GU-RMS treatment during childhood on quality of life. A semistructured interview guide based on the long-term service and support quality-of-life model and grounded in known GU-RMS experiences was created. Two coders independently coded using thematic analysis methodology.

Six themes emerged: (1) unknown fertility status; (2) lack of education; (3) relationships and difficult communication; (4) incontinence, clean intermittent catheterization, and a bag; (5) lifestyle and learned adaptation; and (6) threats to body image. Across these themes, participants reported insufficient knowledge regarding GU-RMS treatment and its impact on function. Participants were principally concerned with anatomical changes, fertility, pregnancy expectations, and survivorship challenges such as communication with romantic partners.

Survivors of GU-RMS have significant urinary and sexual function concerns that are important to address in long-term survivorship. Clinicians can potentially improve survivors' quality of life through open and honest age-appropriate education on expectations for treatment, fertility preservation options, and long-term effects of treatment.