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

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

Pages

407-412

Issue

1

Volume

123

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 May 17, 2022, https://pedpalascnetlibrary.omeka.net/items/show/13975.

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