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A Model for Sustained Collaboration to Address the Unmet Global Burden of Bladder Exstrophy-Epispadias Complex and Penopubic Epispadias: The International Bladder Exstrophy Consortium.解决全球未满足的膀胱外翻-尿道上裂复合畸形和耻骨前型尿道上裂负担的持续协作模型:国际膀胱外翻协会。
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本文引用的文献

1
Short-term outcomes of the multi-institutional bladder exstrophy consortium: Successes and complications in the first two years of collaboration.多机构膀胱外翻联盟的短期结果:合作头两年的成功与并发症
J Pediatr Urol. 2017 Jun;13(3):275.e1-275.e6. doi: 10.1016/j.jpurol.2017.01.006. Epub 2017 Feb 20.
2
Isolated Male Epispadias: Anatomic Functional Restoration Is the Primary Goal.孤立性男性尿道上裂:解剖功能修复是主要目标。
Biomed Res Int. 2016;2016:6983109. doi: 10.1155/2016/6983109. Epub 2016 Sep 18.
3
Failed Primary Bladder Exstrophy Closure with Osteotomy: Multivariable Analysis of a 25-Year Experience.初次膀胱外翻修补术失败并骨切开术:25 年经验的多变量分析。
J Urol. 2017 Apr;197(4):1138-1143. doi: 10.1016/j.juro.2016.09.114. Epub 2016 Oct 5.
4
A critical appraisal of continence in bladder exstrophy: Long-term outcomes of the complete primary repair.膀胱外翻患者尿失禁的批判性评估:一期完全修复的长期结果
J Pediatr Urol. 2016 Aug;12(4):205.e1-7. doi: 10.1016/j.jpurol.2016.04.005. Epub 2016 May 17.
5
Perioperative and anaesthetic-related mortality in developed and developing countries: a systematic review and meta-analysis.发达国家和发展中国家围手术期和麻醉相关死亡率的系统评价和荟萃分析。
Lancet. 2012 Sep 22;380(9847):1075-81. doi: 10.1016/S0140-6736(12)60990-8.
6
Brain Gains: a literature review of medical missions to low and middle-income countries.脑增益:对向低收入和中等收入国家派遣医疗队的文献综述。
BMC Health Serv Res. 2012 May 29;12:134. doi: 10.1186/1472-6963-12-134.
7
The management of bladder exstrophy: Indian scenario.膀胱外翻的管理:印度的情况。
J Indian Assoc Pediatr Surg. 2011 Apr;16(2):43-4. doi: 10.4103/0971-9261.78128.
8
Penile ischemic injury in the exstrophy/epispadias spectrum: new insights and possible mechanisms.尿道上裂/外生殖器异常谱系中的阴茎缺血性损伤:新的见解和可能的机制。
J Pediatr Urol. 2010 Oct;6(5):450-6. doi: 10.1016/j.jpurol.2010.04.007. Epub 2010 Jun 11.
9
Surgical outcomes auditing systems in humanitarian organizations.人道主义组织中的手术结果审核系统。
World J Surg. 2010 Mar;34(3):403-10. doi: 10.1007/s00268-009-0253-6.
10
Long-term follow-up of male patients after reconstruction of the bladder-exstrophy-epispadias complex: psychosocial status, continence, renal and genital function.男性膀胱外翻-尿道上裂患者重建术后的长期随访:社会心理状况、控尿、肾功能和生殖功能。
J Pediatr Urol. 2010 Feb;6(1):6-10. doi: 10.1016/j.jpurol.2009.06.002. Epub 2009 Jul 10.

解决全球未满足的膀胱外翻-尿道上裂复合畸形和耻骨前型尿道上裂负担的持续协作模型:国际膀胱外翻协会。

A Model for Sustained Collaboration to Address the Unmet Global Burden of Bladder Exstrophy-Epispadias Complex and Penopubic Epispadias: The International Bladder Exstrophy Consortium.

机构信息

B.J. Medical College and Civil Hospital, Ahmedabad, Gujarat, India.

Gandhi Medical College, Bhopal, India.

出版信息

JAMA Surg. 2018 Jul 1;153(7):618-624. doi: 10.1001/jamasurg.2018.0067.

DOI:10.1001/jamasurg.2018.0067
PMID:29516095
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5875311/
Abstract

IMPORTANCE

International collaboration to alleviate the massive burden of surgical disease is recognized by World Health Organization as an urgent need, yet the surgical mission model to treat reconstructive surgical challenges is often constrained in ensuring adequate patient follow-up, optimal outcomes, and sustainability.

OBJECTIVE

To determine whether a collaboration predicated on long-term commitment by surgeons returning to the same institution annually combined with an experienced host surgical team and infrastructure to ensure sustained patient follow-up could provide surgical care with acceptable outcomes to treat bladder exstrophy-epispadias complex (BE) and penopubic epispadias (PE).

DESIGN, SETTING, AND PARTICIPANTS: In this prospective, observational study, long-term collaboration was created and based at a public hospital in Ahmedabad, India, between January 2009 and January 2015. The entire postoperative cohort was recalled in January 2016 for comprehensive examination, measurement of continence outcomes, and assessment of surgical complications. Seventy-six percent of patients (n = 57) who underwent complete primary repair of exstrophy during the study interval returned for annual follow-up in 2016 and formed the study cohort: 23 patients with primary BE, 19 patients with redo BE, and 11 patients with PE repair.

MAIN OUTCOMES AND MEASURES

Demographics, operative techniques, and perioperative complications were recorded. A postoperative protocol outlining procedures to ensure monitoring of study participants was followed including removal of ureteral stents, urethral catheter, external fixators, imaging, and patient discharge.

RESULTS

Of the 57 patients, 4 were excluded because they underwent ureterosigmoidostomy. Median age at time of surgery was 3 years (primary BE), 7 years (redo BE), and 10 years (PE), with median follow-up of 3 years, 5 years and 3 years, respectively; boys made up more than 70% of each cohort (n = 17 for primary BE, n = 15 for redo BE, and n = 9 for PE). All BE and 3 PE repairs (27%) were completed with concurrent anterior pubic osteotomies. Seventeen of 53 patients (32%) experienced complications. Only 1 patient with BE (4%) had a bladder dehiscence and was repaired the following year.

CONCLUSIONS AND RELEVANCE

A unique surgical mission model consisting of an international collaborative focused on treating the complex diagnoses of BE and PE offers outcomes comparable with those in high-income countries, demonstrating a significant patient retention rate and an opportunity to rigorously study outcomes over an accelerated interval owing to the high burden of disease in India. Postoperative care following a systematized algorithm and rigorous follow-up is mandatory to ensure safety and optimal outcomes.

摘要

重要性

世界卫生组织认识到,国际合作以减轻外科疾病的巨大负担是当务之急,但治疗重建外科挑战的外科任务模式往往难以确保充分的患者随访、最佳结果和可持续性。

目的

确定是否可以通过外科医生每年返回同一机构的长期承诺、有经验的宿主外科团队和基础设施来确保持续的患者随访来提供可接受的结果来治疗膀胱外翻-尿道上裂(BE)和阴茎耻骨上尿道上裂(PE)。

设计、地点和参与者:在这项前瞻性观察研究中,于 2009 年 1 月至 2015 年 1 月在印度艾哈迈达巴德的一家公立医院建立并开展了长期合作。2016 年 1 月,整个术后队列被召回进行全面检查、评估控尿结果和评估手术并发症。在研究期间接受完全初次修复的 76%(n=57)的患者在 2016 年接受了年度随访,并形成了研究队列:23 例原发性 BE、19 例再发性 BE 和 11 例 PE 修复。

主要结果和测量

记录了人口统计学、手术技术和围手术期并发症。遵循了一项术后方案,概述了确保研究参与者监测的程序,包括输尿管支架、尿道导管、外部固定器、影像学和患者出院的去除。

结果

57 名患者中有 4 名因接受输尿管乙状结肠吻合术而被排除在外。初次手术时的中位年龄分别为 3 岁(原发性 BE)、7 岁(再发性 BE)和 10 岁(PE),中位随访时间分别为 3 年、5 年和 3 年;每个队列的男孩比例均超过 70%(原发性 BE 组 17 例,再发性 BE 组 15 例,PE 组 9 例)。所有 BE 和 3 例 PE 修复(27%)均完成了同期耻骨前截骨术。53 例患者中有 17 例(32%)出现并发症。只有 1 例 BE 患者(4%)膀胱裂开,次年修复。

结论和相关性

由专注于治疗 BE 和 PE 复杂诊断的国际合作组成的独特外科任务模式提供的结果与高收入国家相当,表明由于印度疾病负担沉重,患者保留率高,并有机会在加速的时间内严格研究结果。需要遵循系统化算法和严格随访的术后护理,以确保安全和最佳结果。