Literature DB >> 21658713

National profile of children with Down syndrome: disease burden, access to care, and family impact.

Robert J McGrath1, Michelle L Stransky, W Carl Cooley, John B Moeschler.   

Abstract

OBJECTIVE: To measure the co-morbidities associated with Down syndrome compared with those in other children with special health care needs (CSHCN). Additionally, to examine reported access to care, family impact, and unmet needs for children with Down syndrome compared with other CSHCN. STUDY
DESIGN: An analysis was conducted on the nationally representative 2005 to 2006 National Survey of Children with Special Health Care Needs. Bivariate analyses compared children with Down syndrome with all other CSHCN. Multivariate analyses examined the role of demographic, socioeconomic, and medical factors on measures of care receipt and family impact.
RESULTS: An estimated 98,000 CSHCN have Down syndrome nationally. Compared with other CSHCN, children with Down syndrome had a greater number of co-morbid conditions, were more likely to have unmet needs, faced greater family impacts, and were less likely to have access to a medical home. These differences become more pronounced for children without insurance and from low socioeconomic status families.
CONCLUSIONS: Children with Down syndrome disproportionately face greater disease burden, more negatively pronounced family impacts, and greater unmet needs than other CSHCN. Promoting medical homes at the practice level and use of those services by children with Down syndrome and other CSHCN may help mitigate these family impacts.
Copyright © 2011 Mosby, Inc. All rights reserved.

Entities:  

Mesh:

Year:  2011        PMID: 21658713     DOI: 10.1016/j.jpeds.2011.04.019

Source DB:  PubMed          Journal:  J Pediatr        ISSN: 0022-3476            Impact factor:   4.406


  13 in total

1.  A comparison of family financial and employment impacts of fragile X syndrome, autism spectrum disorders, and intellectual disability.

Authors:  Lijing Ouyang; Scott D Grosse; Catharine Riley; Julie Bolen; Ellen Bishop; Melissa Raspa; Donald B Bailey
Journal:  Res Dev Disabil       Date:  2014-04-20

2.  Attitudes of mothers of children with down syndrome towards noninvasive prenatal testing.

Authors:  Gregory Kellogg; Leah Slattery; Louanne Hudgins; Kelly Ormond
Journal:  J Genet Couns       Date:  2014-02-01       Impact factor: 2.537

3.  Financial and nonfinancial burden among families of CSHCN: changes between 2001 and 2009-2010.

Authors:  Reem M Ghandour; Ashley H Hirai; Stephen J Blumberg; Bonnie B Strickland; Michael D Kogan
Journal:  Acad Pediatr       Date:  2014 Jan-Feb       Impact factor: 3.107

4.  Racial/ethnic differences in hospital use and cost among a statewide population of children with Down syndrome.

Authors:  Taletha Mae Derrington; Milton Kotelchuck; Katrina Plummer; Howard Cabral; Angela E Lin; Candice Belanoff; Mikyong Shin; Adolfo Correa; Scott D Grosse
Journal:  Res Dev Disabil       Date:  2013-07-26

5.  Social conditions for people with Down syndrome: a register-based cohort study in Denmark.

Authors:  Jin Liang Zhu; Carsten Obel; Henrik Hasle; Sonja A Rasmussen; Jiong Li; Jørn Olsen
Journal:  Am J Med Genet A       Date:  2013-11-22       Impact factor: 2.802

6.  Health-related quality of life and coping strategies among families with Down syndrome children in South India.

Authors:  Shreyans Darla; Deepa Bhat
Journal:  Med J Armed Forces India       Date:  2020-10-09

7.  Out-of-pocket expenditures and care time for children with Down Syndrome: A single-hospital study in Mexico City.

Authors:  Silvia Martínez-Valverde; Guillermo Salinas-Escudero; Constanza García-Delgado; Juan Garduño-Espinosa; Verónica F Morán-Barroso; Víctor Granados-García; Ma Teresa Tiro-Sánchez; Filiberto Toledano-Toledano; Ma Vanessa Aldaz-Rodríguez
Journal:  PLoS One       Date:  2019-01-10       Impact factor: 3.240

8.  Quality of Life Among Caregivers of Children with Special Needs in Kelantan, Malaysia: The Importance of Psychosocial Mediators.

Authors:  Siti Nor Ismalina Isa; Ismarulyusda Ishak; Azriani Ab Rahman; Nur Zakiah Mohd Saat; Normah Che Din; Syarif Husin Lubis; Muhammad Faiz Mohd Ismail; Nur Riza Mohd Suradi
Journal:  Malays J Med Sci       Date:  2021-04-21

9.  Demographic and Clinical Characteristics Associated With Adherence to Guideline-Based Polysomnography in Children With Down Syndrome.

Authors:  Philip D Knollman; Christine H Heubi; Susan Wiley; David F Smith; Sally R Shott; Stacey L Ishman; Jareen Meinzen-Derr
Journal:  Otolaryngol Head Neck Surg       Date:  2020-09-15       Impact factor: 5.591

10.  Health conditions and their impact among adolescents and young adults with Down syndrome.

Authors:  Terri J Pikora; Jenny Bourke; Katherine Bathgate; Kitty-Rose Foley; Nicholas Lennox; Helen Leonard
Journal:  PLoS One       Date:  2014-05-12       Impact factor: 3.240

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