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初级保健儿科医生与唇裂和/或腭裂患儿的护理

The Primary Care Pediatrician and the Care of Children With Cleft Lip and/or Cleft Palate.

作者信息

Lewis Charlotte W, Jacob Lisa S, Lehmann Christoph U

出版信息

Pediatrics. 2017 May;139(5). doi: 10.1542/peds.2017-0628.

Abstract

Orofacial clefts, specifically cleft lip and/or cleft palate (CL/P), are among the most common congenital anomalies. CL/P vary in their location and severity and comprise 3 overarching groups: cleft lip (CL), cleft lip with cleft palate (CLP), and cleft palate alone (CP). CL/P may be associated with one of many syndromes that could further complicate a child's needs. Care of patients with CL/P spans prenatal diagnosis into adulthood. The appropriate timing and order of specific cleft-related care are important factors for optimizing outcomes; however, care should be individualized to meet the specific needs of each patient and family. Children with CL/P should receive their specialty cleft-related care from a multidisciplinary cleft or craniofacial team with sufficient patient and surgical volume to promote successful outcomes. The primary care pediatrician at the child's medical home has an essential role in making a timely diagnosis and referral; providing ongoing health care maintenance, anticipatory guidance, and acute care; and functioning as an advocate for the patient and a liaison between the family and the craniofacial/cleft team. This document provides background on CL/P and multidisciplinary team care, information about typical timing and order of cleft-related care, and recommendations for cleft/craniofacial teams and primary care pediatricians in the care of children with CL/P.

摘要

口面部裂隙,特别是唇裂和/或腭裂(CL/P),是最常见的先天性畸形之一。CL/P在位置和严重程度上各不相同,包括三大类:唇裂(CL)、唇裂合并腭裂(CLP)和单纯腭裂(CP)。CL/P可能与许多综合征中的一种相关,这可能会使儿童的需求进一步复杂化。CL/P患者的护理涵盖从产前诊断到成年期。特定腭裂相关护理的适当时间和顺序是优化治疗效果的重要因素;然而,护理应因人而异,以满足每个患者和家庭的特定需求。患有CL/P的儿童应从多学科腭裂或颅面团队接受专门的腭裂相关护理,该团队应有足够的患者数量和手术量以促进成功的治疗效果。儿童医疗之家的初级保健儿科医生在及时诊断和转诊、提供持续的健康保健、预期指导和急性护理以及作为患者的倡导者以及家庭与颅面/腭裂团队之间的联络人方面发挥着重要作用。本文档提供了关于CL/P和多学科团队护理的背景信息、腭裂相关护理的典型时间和顺序信息,以及腭裂/颅面团队和初级保健儿科医生在护理CL/P儿童方面的建议。

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