Research Needs for Effective Transition in Lifelong Care of Congenital Genitourinary Conditions: A Workshop Sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases.
Over the last 5 decades, health-care advances have yielded quantum improvements in the life expectancy of individuals with congenital genitourinary conditions (CGCs), leading to a crisis of care. Many individuals with CGC enter adulthood unprepared to manage their condition. Pediatric CGC specialists lack training to manage adulthood-related health-care issues, whereas adult genitourinary specialists lack training within the context of CGCs. To address these challenges, the National Institutes of Diabetes and Digestive and Kidney Diseases convened individuals with CGCs and experts from a variety of fields to identify research needs to improve transitional urology care. This paper outlines identified research needs.
Children's National Health System, George Washington University, Washington, DC.
Michael H
MH
Hsieh
Glickman Urological and Kidney Institute, Cleveland Clinic, Cleveland, OH. Electronic address: woodh@ccf.org.
Hadley M
HM
Wood
University of Pittsburgh Medical Center, Department of Physical Medicine and Rehabilitation, Pittsburgh, PA.
Brad E
BE
Dicianno
Center for Development Behavior and Genetics, Department of Pediatrics, SUNY Upstate Medical University, Syracuse, NY.
Nienke P
NP
Dosa
MedStar Washington Hospital Center/Children's National Medical Center, Georgetown University, Washington, DC.
Veronica
V
Gomez-Lobo
Wayne State University School of Medicine, Pediatric Nephrology and Hypertension, Children's Hospital of Michigan, Detroit, MI.
Tej K
TK
Mattoo
Department of Urology, Indiana University School of Medicine, Riley Hospital for Children, Indianapolis, IN.
Rosalia
R
Misseri
Division of Kidney, Urologic and Hematologic Diseases, National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health, Bethesda, MD.
Jenna M
JM
Norton
Self-Management Science Center, College of Nursing, University of Wisconsin-Milwaukee (UWM), Children's Hospital of Wisconsin (CHW), Milwaukee, WI.
Kathleen J
KJ
Sawin
Division of General Pediatrics and Adolescent Health, Department of Pediatrics, University of Minnesota Medical School, Minneapolis, MN.
Peter
P
Scal
James Buchanan Brady Urological Institute, Johns Hopkins Medical Institution, Baltimore, MD.
James E
JE
Wright
Division of Kidney, Urologic and Hematologic Diseases, National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health, Bethesda, MD.
Robert A
RA
Star
Division of Kidney, Urologic and Hematologic Diseases, National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health, Bethesda, MD.
Tamara
T
Bavendam
D019033:Delivery of Health Care, Integrated / Q000458:organization & administration; D006801:Humans; D054586:National Institute of Diabetes and Digestive and Kidney Diseases (U.S.); D058996:Quality Improvement; D012106:Research; D000069341:Transitional Care / Q000458:organization & administration / Q000592:standards; D014481:United States; D014564:Urogenital Abnormalities / Q000628:therapy*; D014572:Urology / Q000379:methods / Q000458:organization & administration