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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...
Autores principales: | , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Dove Medical Press
2015
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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. |
format | Online Article Text |
id | pubmed-4514383 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2015 |
publisher | Dove Medical Press |
record_format | MEDLINE/PubMed |
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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