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Disparities and outcomes of patients living with Down Syndrome undergoing healthcare transitions from pediatric to adult care: A scoping review

Down Syndrome (DS) is one of the most common chromosomal disorders worldwide, and people with DS experience more co‐morbidities and have poorer health outcomes compared to the general population. An area that is not well understood is how patients with DS transition from pediatric to adult care, as...

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Autores principales: Varshney, Karan, Iriowen, Rosemary, Morrell, Kayla, Pillay, Preshon, Fossi, Alexander, Stephens, Mary M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley & Sons, Inc. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9545419/
https://www.ncbi.nlm.nih.gov/pubmed/35686676
http://dx.doi.org/10.1002/ajmg.a.62854
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author Varshney, Karan
Iriowen, Rosemary
Morrell, Kayla
Pillay, Preshon
Fossi, Alexander
Stephens, Mary M.
author_facet Varshney, Karan
Iriowen, Rosemary
Morrell, Kayla
Pillay, Preshon
Fossi, Alexander
Stephens, Mary M.
author_sort Varshney, Karan
collection PubMed
description Down Syndrome (DS) is one of the most common chromosomal disorders worldwide, and people with DS experience more co‐morbidities and have poorer health outcomes compared to the general population. An area that is not well understood is how patients with DS transition from pediatric to adult care, as well as the details, barriers, and difficulties of these transitions for patients. Hence, we aimed to provide a scoping review of the literature in PubMed, Scopus, and CINAHL on the topic of healthcare transitions (HCTs) for patients with DS. Findings suggest patients with DS who continued receiving care as an adult from a pediatric care provider tended to experience co‐morbidities and other adverse health issues at higher rates than those who entirely switch to an adult‐care team. Patients with DS were unable to undergo transition due to multiple barriers, such as low income, limited/public insurance, gender, and race. We propose potential steps for transition, which focus on ensuring early planning, communicating better, coordinating services, assessing decision‐making capacity, and providing ongoing social and financial support. Future research must further identify and address barriers to HCTs for people with DS.
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spelling pubmed-95454192022-10-14 Disparities and outcomes of patients living with Down Syndrome undergoing healthcare transitions from pediatric to adult care: A scoping review Varshney, Karan Iriowen, Rosemary Morrell, Kayla Pillay, Preshon Fossi, Alexander Stephens, Mary M. Am J Med Genet A Review Articles Down Syndrome (DS) is one of the most common chromosomal disorders worldwide, and people with DS experience more co‐morbidities and have poorer health outcomes compared to the general population. An area that is not well understood is how patients with DS transition from pediatric to adult care, as well as the details, barriers, and difficulties of these transitions for patients. Hence, we aimed to provide a scoping review of the literature in PubMed, Scopus, and CINAHL on the topic of healthcare transitions (HCTs) for patients with DS. Findings suggest patients with DS who continued receiving care as an adult from a pediatric care provider tended to experience co‐morbidities and other adverse health issues at higher rates than those who entirely switch to an adult‐care team. Patients with DS were unable to undergo transition due to multiple barriers, such as low income, limited/public insurance, gender, and race. We propose potential steps for transition, which focus on ensuring early planning, communicating better, coordinating services, assessing decision‐making capacity, and providing ongoing social and financial support. Future research must further identify and address barriers to HCTs for people with DS. John Wiley & Sons, Inc. 2022-06-10 2022-08 /pmc/articles/PMC9545419/ /pubmed/35686676 http://dx.doi.org/10.1002/ajmg.a.62854 Text en © 2022 The Authors. American Journal of Medical Genetics Part A published by Wiley Periodicals LLC. https://creativecommons.org/licenses/by/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
spellingShingle Review Articles
Varshney, Karan
Iriowen, Rosemary
Morrell, Kayla
Pillay, Preshon
Fossi, Alexander
Stephens, Mary M.
Disparities and outcomes of patients living with Down Syndrome undergoing healthcare transitions from pediatric to adult care: A scoping review
title Disparities and outcomes of patients living with Down Syndrome undergoing healthcare transitions from pediatric to adult care: A scoping review
title_full Disparities and outcomes of patients living with Down Syndrome undergoing healthcare transitions from pediatric to adult care: A scoping review
title_fullStr Disparities and outcomes of patients living with Down Syndrome undergoing healthcare transitions from pediatric to adult care: A scoping review
title_full_unstemmed Disparities and outcomes of patients living with Down Syndrome undergoing healthcare transitions from pediatric to adult care: A scoping review
title_short Disparities and outcomes of patients living with Down Syndrome undergoing healthcare transitions from pediatric to adult care: A scoping review
title_sort disparities and outcomes of patients living with down syndrome undergoing healthcare transitions from pediatric to adult care: a scoping review
topic Review Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9545419/
https://www.ncbi.nlm.nih.gov/pubmed/35686676
http://dx.doi.org/10.1002/ajmg.a.62854
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