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.

中文翻译：

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小儿泌尿生殖系统横纹肌肉瘤幸存者的长期泌尿和性结局：一项定性研究。


目的 泌尿生殖系统横纹肌肉瘤 （GU-RMS） 通常需要多模式治疗，包括放疗、化疗和根治性手术以控制疾病。该疾病和相关治疗的长期影响尚不清楚。我们试图调查儿科 GU-RMS 成年幸存者的长期泌尿生殖系统生活质量。材料和方法 总共有 14 名受试者 （43% 为女性，中位年龄 = 32.5 岁 [IQR = 23.25 - 39.25]，范围 = 20 - 52 岁，2 名膀胱，1 名宫颈，5 名睾丸旁，3 名阴道，2 名骨盆，1 名前列腺 RMS）同意就儿童时期 GU-RMS 治疗对生活质量的影响进行访谈。创建了一个基于长期服务和支持生活质量模型并基于已知 GU-RMS 经验的半结构化访谈指南。两名编码员使用主题分析方法独立编码。结果出现了六个主题：（i） 未知的生育状况，（ii） 缺乏教育，（iii） 人际关系和沟通困难，（iv） 失禁、干净的间歇性导尿和袋子，（v） 生活方式和习得的适应，以及 （vi） 对身体形象的威胁。在这些主题中，参与者报告对 GU-RMS 治疗及其对功能影响的了解不足。参与者主要关注解剖变化、生育能力、怀孕预期和生存挑战，例如与浪漫伴侣的沟通。结论 GU-RMS 的幸存者有严重的泌尿和性功能问题，这些问题在长期生存中很重要。临床医生可以通过公开和诚实地进行适合年龄的教育，让他们了解治疗的期望、保留生育能力的选择和治疗的长期影响，从而有可能改善幸存者的生活质量。