Department of Urology, University Medical Center Groningen, Groningen, The Netherlands.
Department of Urology, University Medical Center Utrecht, Utrecht, The Netherlands.
Neurourol Urodyn. 2024 Jun;43(5):1097-1103. doi: 10.1002/nau.25305. Epub 2024 Jan 30.
A congenital disease is for life. Posterior hypospadias, the severe form of hypospadias with a penoscrotal, scrotal, or perineal meatus, is a challenging condition with a major impact on lifelong quality of life.
Our network meeting is aimed to identify what is currently missing in the lifelong treatment of posterior hypospadias, to improve care, quality of life, and awareness for these patients.
The network meeting "Lifelong Posterior Hypospadias" in Utrecht, The Netherlands was granted by the European Joint Programme on Rare Diseases-Networking Support Scheme. There was a combination of interactive sessions (hackathons) and lectures. This paper can be regarded as the last phase of the hackathon.
Surgery for hypospadias remains challenging and complications may occur until adulthood. Posterior hypospadias affects sexual function, fertility, and hormonal status. Transitional care from childhood into adulthood is currently insufficiently established. Patients should be more involved in defining desired treatment approach and outcome measures. For optimal outcome evaluation standardization of data collection and registration at European level is necessary. Tissue engineering may provide a solution to the shortage of healthy tissue in posterior hypospadias. For optimal results, cooperation between basic researchers from different centers, as well as involving clinicians and patients is necessary.
To improve outcomes for patients with posterior hypospadias, patient voices should be included and lifelong care by dedicated healthcare professionals guaranteed. Other requirements are joining forces at European level in uniform registration of outcome data and cooperation in basic research.
先天性疾病是终身的。后尿道下裂是一种严重的尿道下裂，其尿道开口位于阴茎阴囊、阴囊或会阴，是一种具有重大生活质量影响的挑战性疾病。
我们的网络会议旨在确定在后尿道下裂的终身治疗中目前缺失的内容，以改善这些患者的护理、生活质量和意识。
荷兰乌得勒支的“后尿道下裂终身治疗”网络会议由欧洲罕见病联合计划-网络支持计划资助。会议采用互动环节（黑客马拉松）和讲座相结合的方式。本文可以被视为黑客马拉松的最后一个阶段。
尿道下裂的手术仍然具有挑战性，并且可能会在成年后出现并发症。后尿道下裂会影响性功能、生育能力和激素状态。从儿童期到成年期的过渡护理目前尚未充分建立。患者应该更多地参与定义所需的治疗方法和结果衡量标准。为了实现最佳结果，有必要在欧洲层面上实现数据收集和登记的标准化。组织工程学可能为后尿道下裂中健康组织短缺提供解决方案。为了获得最佳结果，有必要来自不同中心的基础研究人员之间进行合作，并让临床医生和患者参与其中。
为了改善后尿道下裂患者的结果，应该纳入患者的意见，并保证由专门的医疗保健专业人员提供终身护理。其他要求包括在欧洲层面上联合起来，统一登记结果数据，并在基础研究方面进行合作。
