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

IF 5.9 2区 医学 Q1 UROLOGY & NEPHROLOGY Journal of Urology Pub Date : 2025-04-01 Epub Date: 2024-12-12 DOI:10.1097/JU.0000000000004374
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
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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.

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儿童泌尿生殖系统横纹肌肉瘤幸存者的长期泌尿和性预后:一项定性研究。
目的:泌尿生殖系统横纹肌肉瘤(GU-RMS)通常需要放疗、化疗和根治性手术等多模式疗法来控制病情。该疾病及相关治疗的长期影响尚不明确。我们试图调查小儿GU-RMS成年幸存者的长期泌尿生殖系统生活质量:共有 14 名受试者(43% 为女性,中位年龄 = 32.5 岁 [IQR = 23.25 - 39.25],年龄范围 = 20 - 52 岁,2 名膀胱癌患者、1 名宫颈癌患者、5 名睾丸旁癌患者、3 名阴道癌患者、2 名盆腔癌患者、1 名前列腺 RMS 患者)同意就儿童期 GU-RMS 治疗对生活质量的影响进行访谈。根据长期服务和支持生活质量模型,并以已知的 GU-RMS 经验为基础,制定了一份半结构化访谈指南。两名编码员采用主题分析方法进行独立编码:出现了六个主题:(i) 生育状况不明,(ii) 缺乏教育,(iii) 人际关系和沟通困难,(iv) 大小便失禁、清洁间歇导尿和尿袋,(v) 生活方式和学习适应,以及 (vi) 身体形象受到威胁。在这些主题中,参与者表示对 GU-RMS 治疗及其对功能的影响缺乏足够的了解。参与者主要关注的是解剖学变化、生育能力、怀孕预期以及与恋爱伴侣沟通等幸存者面临的挑战:结论:GU-RMS 患者在泌尿和性功能方面有很大的问题,这些问题在长期存活过程中必须加以解决。临床医生可以通过开诚布公的、与年龄相适应的教育来提高幸存者的生活质量,教育内容包括对治疗的期望、保留生育能力的选择以及治疗的长期影响。
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来源期刊
Journal of Urology
Journal of Urology 医学-泌尿学与肾脏学
CiteScore
11.50
自引率
7.60%
发文量
3746
审稿时长
2-3 weeks
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.
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