Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders
Title
Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders
Creator
Grosse SD; Schechter MS; Kulkarni R; Lloyd-Puryear MA; Strickland B; Trevathan E
Identifier
Publisher
Pediatrics
Date
2009
Subject
Humans; Interdisciplinary Communication; Models; Adolescent Transitions; United States/epidemiology; Genetic; Genetic Diseases; Comprehensive Health Care/methods; Inborn/diagnosis/epidemiology/therapy
Description
Approaches to providing comprehensive coordinated care for individuals with complex diseases include the medical home approach, the chronic care model in primary care, and disease-specific, multidisciplinary specialty clinics. There is uneven availability and utilization of multidisciplinary specialty clinics for different genetic diseases. For 2 disorders (ie, hemophilia and cystic fibrosis), effective national networks of specialty clinics exist and reach large proportions of the target populations. For other disorders, notably, sickle cell disease, fewer such centers are available, centers are less likely to be networked, and centers are used less widely. Models of comanagement are essential for promoting ongoing communication and coordination between primary care and subspecialty services, particularly during the transition from pediatric care to adult care. Evaluation of the effectiveness of different models in improving outcomes for individuals with genetic diseases is essential.
2009
Rights
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
Journal Article
Citation List Month
Backlog
URL Address
Citation
Grosse SD; Schechter MS; Kulkarni R; Lloyd-Puryear MA; Strickland B; Trevathan E, “Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders,” Pediatric Palliative Care Library, accessed September 24, 2023, https://pedpalascnetlibrary.omeka.net/items/show/13975.