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Published on: March 27, 2018
Multidisciplinary and multidimensional approaches to transplantation in children with rare genetic kidney diseases
Roshan P George1, Pamela D Winterberg1, Rouba Garro1
1Division of Pediatric Nephrology, Department of Pediatrics, Emory University School of Medicine, and Children's Healthcare of Atlanta, Atlanta, Georgia, USA.
Insights
Optimizing outcomes for pediatric kidney transplant recipients with rare genetic diseases requires a comprehensive, multidisciplinary team approach. This includes medical and non-medical specialists for successful transplantation and improved quality of life.
Area of Science:
- Nephrology
- Genetics
- Pediatric Transplantation
Background:
- Pediatric kidney transplant recipients with rare genetic diseases require specialized, comprehensive care.
- Standard transplant teams are essential but often insufficient for these complex cases.
Purpose of the Study:
- To outline the multidisciplinary, multidimensional care needed for pediatric transplant recipients with rare genetic kidney diseases.
- To highlight the roles of various specialists beyond the core transplant team.
Main Methods:
- Review of multidisciplinary care strategies for pediatric kidney transplantation.
- Categorization of rare genetic kidney diseases into five subgroups for detailed analysis.
Main Results:
- Successful transplantation, recipient survival, and quality of life depend on extensive collaboration.
- Specific subgroups (metabolic, glomerular, congenital, ciliopathies, miscellaneous) necessitate tailored, extended care.
Conclusions:
- A broad, multidisciplinary team involving medical, non-medical, and subspecialty experts is critical for optimizing outcomes.
- Care must be individualized based on the specific rare genetic kidney disease and transplant phase.
Abstract:
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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