Multidisciplinary and multidimensional approaches to transplantation in children with rare genetic kidney diseases

被引:1
|
作者
George, Roshan P. [1 ,2 ]
Winterberg, Pamela D.
Garro, Rouba
机构
[1] Emory Univ, Dept Pediat, Div Pediat Nephrol, Sch Med, 2015 Uppergate Dr, Atlanta, GA 30322 USA
[2] Childrens Healthcare Atlanta, 2015 Uppergate Dr, Atlanta, GA 30322 USA
关键词
multidisciplinary care; pediatric transplantation; rare genetic diseases; PRIMARY HYPEROXALURIA TYPE-1; NAIL-PATELLA SYNDROME; ALPORTS-SYNDROME; METHYLMALONIC ACIDEMIA; NEPHROTIC SYNDROME; NATURAL-HISTORY; RENAL-DISEASE; FABRY-DISEASE; NEPHRONOPHTHISIS; MUTATIONS;
D O I
10.1111/petr.14567
中图分类号
R72 [儿科学];
学科分类号
100202 ;
摘要
In this review, we describe the multidisciplinary, multidimensional care required to optimize outcomes for pediatric transplant recipients with rare genetic kidney diseases. Transplant success, recipient survival, and improvement in quality of life depend on collaboration between patients, families, and a team of specialists with medical, as well as nonmedical expertise. A multidisciplinary transplant team composed of experts from medicine, surgery, nursing, nutrition, social services, transplant coordination, psychology, and pharmacology, is now standard in most transplant centers and is critical to the success of a transplant. In addition to these professionals, other specialists, such as cardiologists, urologists, geneticists, metabolic disease specialists, occupational therapists, case management, child life, chaplain, and palliative care services, have a crucial role to play in the preparation, surgery, and follow-up care, especially when a pediatric patient has a rare genetic disorder leading to renal involvement, and the need for transplantation. In order to describe this multidisciplinary care, we divide the genetic renal diseases into five subgroups-metabolic and tubular disorders, glomerular diseases, congenital anomalies of the kidney and urinary tract, ciliopathies including cystic diseases, and miscellaneous renal conditions; and describe for each, the need for care beyond that provided by the standard transplant team members.
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页数:12
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