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先天性巨结肠症患者有效过渡到成人服务的障碍

Obstacles to an Effective Transition to Adult Services for Patients with Hirschsprung Disease.

作者信息

Davidson Joseph R, Curry Joe

机构信息

UCL Great Ormond Street Institute of Child Health, London WC1N 1EH, UK.

Evelina London Children's Hospital, London SE1 7EH, UK.

出版信息

Children (Basel). 2024 Oct 14;11(10):1237. doi: 10.3390/children11101237.

DOI:10.3390/children11101237
PMID:39457202
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11506805/
Abstract

A growing number of patients with Hirschsprung disease are reaching adulthood, of whom a significant minority will require ongoing input from healthcare providers. In order to ensure patients receive the best care possible, it is essential to transition patients appropriately to adult services. This article describes the unmet need and some of the obstacles to this process and explores potential solutions, drawing on model examples for transitional care.

摘要

越来越多的先天性巨结肠病患者已步入成年期,其中相当一部分患者仍需要医疗服务提供者的持续关注。为确保患者获得尽可能最佳的护理,将患者妥善过渡到成人医疗服务至关重要。本文阐述了这一过程中未得到满足的需求和一些障碍,并借鉴过渡性护理的典型案例探讨了潜在的解决方案。

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Obstacles to an Effective Transition to Adult Services for Patients with Hirschsprung Disease.先天性巨结肠症患者有效过渡到成人服务的障碍
Children (Basel). 2024 Oct 14;11(10):1237. doi: 10.3390/children11101237.
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本文引用的文献

1
Influence of Diet on Bowel Function and Abdominal Symptoms in Children and Adolescents with Hirschsprung Disease-A Multinational Patient-Reported Outcome Survey.饮食对患有先天性巨结肠症的儿童和青少年肠道功能及腹部症状的影响——一项多国患者报告结局调查
Children (Basel). 2024 Sep 12;11(9):1118. doi: 10.3390/children11091118.
2
Transitional Care in Patients With Hirschsprung Disease: Those Left Behind.先天性巨结肠症患者的过渡性护理:被忽视的群体。
Dis Colon Rectum. 2024 Jul 1;67(7):977-984. doi: 10.1097/DCR.0000000000003208. Epub 2024 Apr 23.
3
Letter to the Editor in Response to: Long-term Male Sexual Function and Fecal Incontinence Outcomes for Adult Patients with Hirschsprung Disease or Anorectal Malformation.致编辑的信:回应《先天性巨结肠或肛门直肠畸形成年患者的长期男性性功能和大便失禁结果》
J Pediatr Surg. 2023 Sep;58(9):1857-1858. doi: 10.1016/j.jpedsurg.2023.05.023. Epub 2023 May 30.
4
Fertility in patients with Hirschsprung's disease: population-based cohort study.先天性巨结肠症患者的生育能力:基于人群的队列研究。
BJS Open. 2023 May 5;7(3). doi: 10.1093/bjsopen/zrad043.
5
Long-Term Male Sexual Function and Fecal Incontinence Outcomes for Adult Patients with Hirschsprung Disease or Anorectal Malformation.先天性巨结肠或肛门直肠畸形成年患者的长期男性性功能和粪便失禁结局。
J Pediatr Surg. 2023 Aug;58(8):1573-1577. doi: 10.1016/j.jpedsurg.2023.04.006. Epub 2023 Apr 21.
6
Do adult patients with congenital colorectal conditions know their diagnosis?先天性结直肠疾病的成年患者是否了解自己的诊断?
Pediatr Surg Int. 2022 Dec;38(12):1723-1728. doi: 10.1007/s00383-022-05220-0. Epub 2022 Sep 21.
7
Comparative cohort study of Duhamel and endorectal pull-through for Hirschsprung's disease.Duhamel 与经肛门内拖出术治疗先天性巨结肠的对比队列研究。
BJS Open. 2022 Jan 6;6(1). doi: 10.1093/bjsopen/zrab143.
8
Outcomes in Hirschsprung's disease with coexisting learning disability.先天性巨结肠症伴发学习障碍的预后。
Eur J Pediatr. 2021 Dec;180(12):3499-3507. doi: 10.1007/s00431-021-04129-5. Epub 2021 Jun 11.
9
Sexual function, quality of life, and fertility in women who had surgery for neonatal Hirschsprung's disease.接受新生儿先天性巨结肠手术的女性的性功能、生活质量和生育能力。
Br J Surg. 2021 Mar 12;108(2):e79-e80. doi: 10.1093/bjs/znaa108.
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Long-term surgical and patient-reported outcomes of Hirschsprung Disease.先天性巨结肠症的长期手术和患者报告结果。
J Pediatr Surg. 2021 Sep;56(9):1502-1511. doi: 10.1016/j.jpedsurg.2021.01.043. Epub 2021 Feb 13.