[与EBH一起长大,这是罕见病领域儿童-成人转变的一个例子]。

Q4 Nursing Soins; la revue de reference infirmiere Pub Date : 2023-11-01 Epub Date: 2023-10-20 DOI:10.1016/j.soin.2023.09.008
Emmanuelle Bourrat
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引用次数: 0

摘要

从儿科到成人病房的过渡涉及所有儿童发病的慢性疾病,但在严重形式的遗传性大疱性表皮松解症的情况下有许多特定特征:随着年龄的增长、某些并发症(癌症、肾脏、营养、牙科)的出现或增加,伤口表面和慢性性恶化,有时治疗选择困难,有时危及生命的预后。但限制患者自主性的一个主要问题是,很难找到护理人员来接管皮肤护理,而皮肤护理通常是由父母从出生起就提供的,而父母在必要时成为了护理人员。
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[Growing up with an EBH, an example of pediatric-adult transition in the field of rare diseases].

The transition from pediatrics to adult wards concerns all chronic diseases with a pediatric onset, but there are a number of specific features in the case of severe forms of hereditary epidermolysis bullosa: worsening wound surface and chronicity with age, appearance or increase in certain complications (carcinological, renal, nutritional, dental), sometimes difficult therapeutic choices, sometimes life-threatening prognosis. But one of the major problems limiting the patient's autonomy is the difficulty of finding a paramedic to take over skin care, often provided from birth by a parent who has become a caregiver through necessity.

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来源期刊
CiteScore
0.30
自引率
0.00%
发文量
147
期刊介绍: La revue Soins adresse a toutes celles et ceux qui ont choisi la profession infirmière : en cours études et en exercice, hospitaliers et libéraux, cadres et non cadres. Cette revue a deux objectifs majeurs : former aux savoirs et aux pratiques nécessaires a un exercice infirmier de qualité, et informer au plus près de le actualité professionnelle, sanitaire et sociale susceptible de modifier les pratiques professionnelles des infirmier(e)s.
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