[成人常染色体显性多囊肾病 (ADPKD) 患者的管理需要多学科方法]。

Romina Bucci, Liliana Italia De Rosa, Matteo Brambilla Pisoni, Sara Farinone, Marta Vespa, Giancarlo Joli, Martina Catania, Kristiana Kola, Francesca Tunesi, Elena Brioni, Paola Carrera, Giulia Mancassola, Lorena Citterio, Paolo Manunta, Giuseppe Vezzoli, Maria Teresa Sciarrone Alibrandi
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引用次数: 0

摘要

常染色体显性多囊肾(ADPKD)是最常见的遗传性肾病。其主要特征是双肾逐渐增大,肾功能逐渐丧失。ADPKD 是全球第四大终末肾衰竭病因。时至今日,这种疾病仍然存在不确定性,信息不畅。患者往往对疾病持放弃和被动的态度。然而,目前国际上还没有公认的临床实践指南,各地区在 ADPKD 的诊断、临床评估、预防和治疗方法上也存在很大差异。因此,我们认为有必要指出我们 ADPKD 专科门诊的做法,该门诊从一开始就采用了多学科方法(肾脏病学家、遗传学家、心理学家、放射学家、营养学家),360° 全方位面对该疾病,因此不仅仅是从纯粹的肾脏病学角度出发。这种策略不仅能让患者得到及时、准确的疾病诊断,还能确保他们长期得到全面、有针对性的跟踪治疗,从而预防或至少减缓疾病的发展,尽可能让患者对自己的病情有一个清醒的认识。
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[The Management of Patients with Adult Autosomal Dominant Polycystic Kidney Disease (ADPKD) Requires a Multidisciplinary Approach].

Autosomal dominant polycystic kidney disease (ADPKD) is the most common genetic kidney disease. Its main feature is the progressive enlargement of both kidneys with progressive loss of kidney function. ADPKD is the fourth leading cause of terminal renal failure in the world. Even today there are still uncertainties and poor information. Patients too often have a renunciatory and passive attitude toward the disease. However, there are currently no internationally accepted clinical practice guidelines, and there are significant regional variations in approaches to the diagnosis, clinical evaluation, prevention, and treatment of ADPKD. Therefore, we believe it is important to point out the conduct of our specialist outpatient clinic for ADPKD, which from the beginning has developed a multidisciplinary approach (nephrologists, geneticists, psychologists, radiologists, nutritionists) to face the disease at 360° and therefore not only from a purely nephrological point of view. Such a strategy not only enables patients to receive a timely and accurate diagnosis of the disease, but also ensures that they will receive a thorough and focused follow-up over time, that can prevent or at least slow down the disease in its evolution providing patients with a serene awareness of their condition as much as possible.

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来源期刊
CiteScore
0.70
自引率
0.00%
发文量
62
期刊介绍: Il Giornale Italiano di Nefrologia (GIN) è la rivista di educazione continua della Società Italiana di Nefrologia SIN ed è pubblicato bimestralmente. E" il più autorevole organo di informazione nefrologia disponibile a livello nazionale. Il giornale Italiano di Nefrologia offre la più aggiornata informazione medico-scientifica rivolta al nefrologo sotto forma di rassegne, casi clinici e articoli finalizzati all’Educazione Continua in Medicina, oltre ai notiziari ed agli atti dei congressi di questa prestigiosa Società Scientifica
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