成人CF患者护理的挑战——囊性纤维化专家团队。

J Goździk, L Majka-Sumner, S Cofta, A Nowicka, T Piorunek, H Batura-Gabryel
{"title":"成人CF患者护理的挑战——囊性纤维化专家团队。","authors":"J Goździk,&nbsp;L Majka-Sumner,&nbsp;S Cofta,&nbsp;A Nowicka,&nbsp;T Piorunek,&nbsp;H Batura-Gabryel","doi":"","DOIUrl":null,"url":null,"abstract":"<p><p>Cystic fibrosis (CF) is the most common life-limiting, autosomal, recessive genetic disorder. The gene which is responsible for the symptoms of this disease is located on the long arm of chromosome 7 and encodes the protein called Cystic Fibrosis Transmembrane Conductance Regulator (CFTR), an apical chloride channel in epithelial cells. CF is a \"multi-system\" disease. It affects many parts of the body and it has a varied clinical expression. All patients with CF should have access to specialist services and the treatment must be comprehensive and multidisciplinary. The multidisciplinary team approach is important when trying to optimize care given to the patient and their family. The cystic fibrosis team may include personnel from the following specialist areas: medical, nursing, physiotherapy, dietetics, psychological, social/supportive. Close coordination is vital. Ideally, 'all members of the team' should have had CF care-related training. The specialist team approach ensures that such specialized multidisciplinary expertise is applied in all aspects of care, better knowledge of individual families, continuity, knowledge of treatment advances and the ability to apply these in daily management. Doubtlessly CF team ensures families a specific point of contact and they know who to talk to. In 1997 The Department of Pulmonology Diseases in Poznań started running a programme for CF adults at our University--the second CF adult centre in Poland. Members of our CF team have experience in the management of adults who have cystic fibrosis. Its members include physicians, nurses, a physiotherpist, a dietitian, a social worker and a psychologist. We must to build the team approach in CF care and use effectively talents of multiprofessional team members as fully as possible to deliver better services to patients.</p>","PeriodicalId":79372,"journal":{"name":"Roczniki Akademii Medycznej w Bialymstoku (1995)","volume":"50 Suppl 1 ","pages":"42-5"},"PeriodicalIF":0.0000,"publicationDate":"2005-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Challenges in care of adult CF patients--the specialist cystic fibrosis team.\",\"authors\":\"J Goździk,&nbsp;L Majka-Sumner,&nbsp;S Cofta,&nbsp;A Nowicka,&nbsp;T Piorunek,&nbsp;H Batura-Gabryel\",\"doi\":\"\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>Cystic fibrosis (CF) is the most common life-limiting, autosomal, recessive genetic disorder. The gene which is responsible for the symptoms of this disease is located on the long arm of chromosome 7 and encodes the protein called Cystic Fibrosis Transmembrane Conductance Regulator (CFTR), an apical chloride channel in epithelial cells. CF is a \\\"multi-system\\\" disease. It affects many parts of the body and it has a varied clinical expression. All patients with CF should have access to specialist services and the treatment must be comprehensive and multidisciplinary. The multidisciplinary team approach is important when trying to optimize care given to the patient and their family. The cystic fibrosis team may include personnel from the following specialist areas: medical, nursing, physiotherapy, dietetics, psychological, social/supportive. Close coordination is vital. Ideally, 'all members of the team' should have had CF care-related training. The specialist team approach ensures that such specialized multidisciplinary expertise is applied in all aspects of care, better knowledge of individual families, continuity, knowledge of treatment advances and the ability to apply these in daily management. Doubtlessly CF team ensures families a specific point of contact and they know who to talk to. In 1997 The Department of Pulmonology Diseases in Poznań started running a programme for CF adults at our University--the second CF adult centre in Poland. Members of our CF team have experience in the management of adults who have cystic fibrosis. Its members include physicians, nurses, a physiotherpist, a dietitian, a social worker and a psychologist. We must to build the team approach in CF care and use effectively talents of multiprofessional team members as fully as possible to deliver better services to patients.</p>\",\"PeriodicalId\":79372,\"journal\":{\"name\":\"Roczniki Akademii Medycznej w Bialymstoku (1995)\",\"volume\":\"50 Suppl 1 \",\"pages\":\"42-5\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2005-01-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Roczniki Akademii Medycznej w Bialymstoku (1995)\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"\",\"JCRName\":\"\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Roczniki Akademii Medycznej w Bialymstoku (1995)","FirstCategoryId":"1085","ListUrlMain":"","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
引用次数: 0

摘要

囊性纤维化(CF)是最常见的限制生命的常染色体隐性遗传疾病。导致这种疾病症状的基因位于7号染色体的长臂上,编码一种名为囊性纤维化跨膜传导调节因子(CFTR)的蛋白质,这是上皮细胞中的一种顶端氯离子通道。CF是一种“多系统”疾病。它影响身体的许多部位,有多种临床表现。所有CF患者都应该有机会获得专业服务,治疗必须是全面和多学科的。多学科团队的方法是重要的,当试图优化护理给予病人和他们的家人。囊性纤维化小组可能包括以下专业领域的人员:医疗、护理、物理治疗、营养、心理、社会/支持。密切协调至关重要。理想情况下,“团队的所有成员”都应该接受过CF护理相关的培训。专家团队的方法确保这些专业的多学科专业知识应用于护理的各个方面,更好地了解个别家庭、连续性、治疗进展的知识以及在日常管理中应用这些知识的能力。毫无疑问,CF团队确保家庭有一个特定的联络点,他们知道该和谁交谈。1997年,波兹纳奇肺病系开始在我们大学开展一个CF成人项目——波兰第二个CF成人中心。我们CF团队的成员在管理患有囊性纤维化的成人方面具有丰富的经验。其成员包括医生、护士、物理治疗师、营养师、社会工作者和心理学家。在CF护理中,我们必须建立团队合作模式,尽可能充分发挥多专业团队成员的才能,为患者提供更好的服务。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
分享 分享
微信好友 朋友圈 QQ好友 复制链接
本刊更多论文
Challenges in care of adult CF patients--the specialist cystic fibrosis team.

Cystic fibrosis (CF) is the most common life-limiting, autosomal, recessive genetic disorder. The gene which is responsible for the symptoms of this disease is located on the long arm of chromosome 7 and encodes the protein called Cystic Fibrosis Transmembrane Conductance Regulator (CFTR), an apical chloride channel in epithelial cells. CF is a "multi-system" disease. It affects many parts of the body and it has a varied clinical expression. All patients with CF should have access to specialist services and the treatment must be comprehensive and multidisciplinary. The multidisciplinary team approach is important when trying to optimize care given to the patient and their family. The cystic fibrosis team may include personnel from the following specialist areas: medical, nursing, physiotherapy, dietetics, psychological, social/supportive. Close coordination is vital. Ideally, 'all members of the team' should have had CF care-related training. The specialist team approach ensures that such specialized multidisciplinary expertise is applied in all aspects of care, better knowledge of individual families, continuity, knowledge of treatment advances and the ability to apply these in daily management. Doubtlessly CF team ensures families a specific point of contact and they know who to talk to. In 1997 The Department of Pulmonology Diseases in Poznań started running a programme for CF adults at our University--the second CF adult centre in Poland. Members of our CF team have experience in the management of adults who have cystic fibrosis. Its members include physicians, nurses, a physiotherpist, a dietitian, a social worker and a psychologist. We must to build the team approach in CF care and use effectively talents of multiprofessional team members as fully as possible to deliver better services to patients.

求助全文
通过发布文献求助,成功后即可免费获取论文全文。 去求助
来源期刊
自引率
0.00%
发文量
0
期刊最新文献
The cortical evoked potentials in children with developmental coordination disorder (DCD). Neuroprotection possibilities in epileptic children. New antiepileptic drugs--an overview. Youth's knowledge and attitude to epilepsy. Community nursing care of the elderly during transformation of the primary health care system.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
现在去查看 取消
×
提示
确定
0
微信
客服QQ
Book学术公众号 扫码关注我们
反馈
×
意见反馈
请填写您的意见或建议
请填写您的手机或邮箱
已复制链接
已复制链接
快去分享给好友吧!
我知道了
×
扫码分享
扫码分享
Book学术官方微信
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术
文献互助 智能选刊 最新文献 互助须知 联系我们:info@booksci.cn
Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。
Copyright © 2023 Book学术 All rights reserved.
ghs 京公网安备 11010802042870号 京ICP备2023020795号-1