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

Document Type

Article

Publication Date

12-12-2024

Publication Title

The Journal of urology

Abstract

PURPOSE: 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.

MATERIALS AND METHODS: In total, 14 subjects (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, 1 prostate RMS) agreed to interview about impact of GU-RMS treatment during childhood on quality of life. A semi-structured 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.

RESULTS: Six themes emerged: (i) unknown fertility status, (ii) lack of education, (iii) relationships and difficult communication, (iv) incontinence, clean intermittent catheterization, and a bag, (v) lifestyle and learned adaptation, and (vi) 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.

CONCLUSIONS: 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.

First Page

101097

DOI

10.1097/JU.0000000000004374

ISSN

1527-3792

PubMed ID

39666941

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