Rachel A Saunders, Andrea K Balthazar, Christopher D Jaeger, Monah Javidan-Nejad, Candace Y Chung, Judith A Vessey, Richard S Lee, Hsin-Hsiao Scott Wang
{"title":"Long-Term Urinary and Sexual Outcomes in Pediatric Genitourinary Rhabdomyosarcoma Survivors: A Qualitative Study.","authors":"Rachel A Saunders, Andrea K Balthazar, Christopher D Jaeger, Monah Javidan-Nejad, Candace Y Chung, Judith A Vessey, Richard S Lee, Hsin-Hsiao Scott Wang","doi":"10.1097/JU.0000000000004374","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>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.</p><p><strong>Materials and methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":17471,"journal":{"name":"Journal of Urology","volume":" ","pages":"494-503"},"PeriodicalIF":5.9000,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Urology","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1097/JU.0000000000004374","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/12/12 0:00:00","PubModel":"Epub","JCR":"Q1","JCRName":"UROLOGY & NEPHROLOGY","Score":null,"Total":0}
引用次数: 0
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 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.
Results: 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.
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.
期刊介绍:
The Official Journal of the American Urological Association (AUA), and the most widely read and highly cited journal in the field, The Journal of Urology® brings solid coverage of the clinically relevant content needed to stay at the forefront of the dynamic field of urology. This premier journal presents investigative studies on critical areas of research and practice, survey articles providing short condensations of the best and most important urology literature worldwide, and practice-oriented reports on significant clinical observations.