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The eXtraordinarY Kids Clinic: an interdisciplinary model of care for children and adolescents with sex chromosome aneuploidy

PURPOSE: Individuals with sex chromosome aneuploidies (SCAs) are born with an atypical number of X and/or Y chromosomes, and present with a range of medical, developmental, educational, behavioral, and psychological concerns. Rates of SCA diagnoses in infants and children are increasing, and there i...

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Autores principales: Tartaglia, Nicole, Howell, Susan, Wilson, Rebecca, Janusz, Jennifer, Boada, Richard, Martin, Sydney, Frazier, Jacqueline B, Pfeiffer, Michelle, Regan, Karen, McSwegin, Sarah, Zeitler, Philip
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Dove Medical Press 2015
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4514383/
https://www.ncbi.nlm.nih.gov/pubmed/26229481
http://dx.doi.org/10.2147/JMDH.S80242
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author Tartaglia, Nicole
Howell, Susan
Wilson, Rebecca
Janusz, Jennifer
Boada, Richard
Martin, Sydney
Frazier, Jacqueline B
Pfeiffer, Michelle
Regan, Karen
McSwegin, Sarah
Zeitler, Philip
author_facet Tartaglia, Nicole
Howell, Susan
Wilson, Rebecca
Janusz, Jennifer
Boada, Richard
Martin, Sydney
Frazier, Jacqueline B
Pfeiffer, Michelle
Regan, Karen
McSwegin, Sarah
Zeitler, Philip
author_sort Tartaglia, Nicole
collection PubMed
description PURPOSE: Individuals with sex chromosome aneuploidies (SCAs) are born with an atypical number of X and/or Y chromosomes, and present with a range of medical, developmental, educational, behavioral, and psychological concerns. Rates of SCA diagnoses in infants and children are increasing, and there is a need for specialized interdisciplinary care to address associated risks. The eXtraordinarY Kids Clinic was established to provide comprehensive and experienced care for children and adolescents with SCA, with an interdisciplinary team composed of developmental–behavioral pediatrics, endocrinology, genetic counseling, child psychology, pediatric neuropsychology, speech–language pathology, occupational therapy, nursing, and social work. The clinic model includes an interdisciplinary approach to care, where assessment results by each discipline are integrated to develop unified diagnostic impressions and treatment plans individualized for each patient. Additional objectives of the eXtraordinarY Kids Clinic program include prenatal genetic counseling, research, education, family support, and advocacy. METHODS: Satisfaction surveys were distributed to 496 patients, and responses were received from 168 unique patients. RESULTS: Satisfaction with the overall clinic visit was ranked as “very satisfied” in 85%, and as “satisfied” in another 9.8%. Results further demonstrate specific benefits from the clinic experience, the importance of a knowledgeable clinic coordinator, and support the need for similar clinics across the country. Three case examples of the interdisciplinary approach to assessment and treatment are included.
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spelling pubmed-45143832015-07-30 The eXtraordinarY Kids Clinic: an interdisciplinary model of care for children and adolescents with sex chromosome aneuploidy Tartaglia, Nicole Howell, Susan Wilson, Rebecca Janusz, Jennifer Boada, Richard Martin, Sydney Frazier, Jacqueline B Pfeiffer, Michelle Regan, Karen McSwegin, Sarah Zeitler, Philip J Multidiscip Healthc Original Research PURPOSE: Individuals with sex chromosome aneuploidies (SCAs) are born with an atypical number of X and/or Y chromosomes, and present with a range of medical, developmental, educational, behavioral, and psychological concerns. Rates of SCA diagnoses in infants and children are increasing, and there is a need for specialized interdisciplinary care to address associated risks. The eXtraordinarY Kids Clinic was established to provide comprehensive and experienced care for children and adolescents with SCA, with an interdisciplinary team composed of developmental–behavioral pediatrics, endocrinology, genetic counseling, child psychology, pediatric neuropsychology, speech–language pathology, occupational therapy, nursing, and social work. The clinic model includes an interdisciplinary approach to care, where assessment results by each discipline are integrated to develop unified diagnostic impressions and treatment plans individualized for each patient. Additional objectives of the eXtraordinarY Kids Clinic program include prenatal genetic counseling, research, education, family support, and advocacy. METHODS: Satisfaction surveys were distributed to 496 patients, and responses were received from 168 unique patients. RESULTS: Satisfaction with the overall clinic visit was ranked as “very satisfied” in 85%, and as “satisfied” in another 9.8%. Results further demonstrate specific benefits from the clinic experience, the importance of a knowledgeable clinic coordinator, and support the need for similar clinics across the country. Three case examples of the interdisciplinary approach to assessment and treatment are included. Dove Medical Press 2015-07-17 /pmc/articles/PMC4514383/ /pubmed/26229481 http://dx.doi.org/10.2147/JMDH.S80242 Text en © 2015 Tartaglia et al. This work is published by Dove Medical Press Limited, and licensed under Creative Commons Attribution – Non Commercial (unported, v3.0) License The full terms of the License are available at http://creativecommons.org/licenses/by-nc/3.0/. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed.
spellingShingle Original Research
Tartaglia, Nicole
Howell, Susan
Wilson, Rebecca
Janusz, Jennifer
Boada, Richard
Martin, Sydney
Frazier, Jacqueline B
Pfeiffer, Michelle
Regan, Karen
McSwegin, Sarah
Zeitler, Philip
The eXtraordinarY Kids Clinic: an interdisciplinary model of care for children and adolescents with sex chromosome aneuploidy
title The eXtraordinarY Kids Clinic: an interdisciplinary model of care for children and adolescents with sex chromosome aneuploidy
title_full The eXtraordinarY Kids Clinic: an interdisciplinary model of care for children and adolescents with sex chromosome aneuploidy
title_fullStr The eXtraordinarY Kids Clinic: an interdisciplinary model of care for children and adolescents with sex chromosome aneuploidy
title_full_unstemmed The eXtraordinarY Kids Clinic: an interdisciplinary model of care for children and adolescents with sex chromosome aneuploidy
title_short The eXtraordinarY Kids Clinic: an interdisciplinary model of care for children and adolescents with sex chromosome aneuploidy
title_sort extraordinary kids clinic: an interdisciplinary model of care for children and adolescents with sex chromosome aneuploidy
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4514383/
https://www.ncbi.nlm.nih.gov/pubmed/26229481
http://dx.doi.org/10.2147/JMDH.S80242
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