Growing up with Fragile X Syndrome: Concerns and Care Needs of Young Adult Patients and Their Parents

Little is known about care needs of young adults with Fragile X Syndrome (FXS). Patient-driven information is needed to improve understanding and support of young adults with FXS. A qualitative study was performed in 5 young adult patients (aged 18–30), and 33 parents of young adults. Concerns and c...

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Autores principales: Van Remmerden, M. C., Hoogland, L., Mous, S. E., Dierckx, B., Coesmans, M., Moll, H. A., Lubbers, K., Lincken, C. R., Van Eeghen, A. M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer US 2019
Materias:
Original Paper
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7261272/
https://www.ncbi.nlm.nih.gov/pubmed/30879259
http://dx.doi.org/10.1007/s10803-019-03973-7
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author Van Remmerden, M. C.
Hoogland, L.
Mous, S. E.
Dierckx, B.
Coesmans, M.
Moll, H. A.
Lubbers, K.
Lincken, C. R.
Van Eeghen, A. M.
author_facet Van Remmerden, M. C.
Hoogland, L.
Mous, S. E.
Dierckx, B.
Coesmans, M.
Moll, H. A.
Lubbers, K.
Lincken, C. R.
Van Eeghen, A. M.
author_sort Van Remmerden, M. C.
collection PubMed
description Little is known about care needs of young adults with Fragile X Syndrome (FXS). Patient-driven information is needed to improve understanding and support of young adults with FXS. A qualitative study was performed in 5 young adult patients (aged 18–30), and 33 parents of young adults. Concerns and care needs were categorized using the International Classification of Functioning, Disability, and Health. Results indicated concerns on 14 domains for males, and 13 domains for females, including physical, psychological and socio-economical issues. In both groups parents reported high stress levels and a lack of knowledge of FXS in adult care providers. This study revealed concerns on various domains, requiring gender-specific, multidisciplinary transitional care and adult follow-up for patients with FXS.
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spelling pubmed-72612722020-06-10 Growing up with Fragile X Syndrome: Concerns and Care Needs of Young Adult Patients and Their Parents Van Remmerden, M. C. Hoogland, L. Mous, S. E. Dierckx, B. Coesmans, M. Moll, H. A. Lubbers, K. Lincken, C. R. Van Eeghen, A. M. J Autism Dev Disord Original Paper Little is known about care needs of young adults with Fragile X Syndrome (FXS). Patient-driven information is needed to improve understanding and support of young adults with FXS. A qualitative study was performed in 5 young adult patients (aged 18–30), and 33 parents of young adults. Concerns and care needs were categorized using the International Classification of Functioning, Disability, and Health. Results indicated concerns on 14 domains for males, and 13 domains for females, including physical, psychological and socio-economical issues. In both groups parents reported high stress levels and a lack of knowledge of FXS in adult care providers. This study revealed concerns on various domains, requiring gender-specific, multidisciplinary transitional care and adult follow-up for patients with FXS. Springer US 2019-03-16 2020 /pmc/articles/PMC7261272/ /pubmed/30879259 http://dx.doi.org/10.1007/s10803-019-03973-7 Text en © The Author(s) 2019 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
spellingShingle Original Paper
Van Remmerden, M. C.
Hoogland, L.
Mous, S. E.
Dierckx, B.
Coesmans, M.
Moll, H. A.
Lubbers, K.
Lincken, C. R.
Van Eeghen, A. M.
Growing up with Fragile X Syndrome: Concerns and Care Needs of Young Adult Patients and Their Parents
title Growing up with Fragile X Syndrome: Concerns and Care Needs of Young Adult Patients and Their Parents
title_full Growing up with Fragile X Syndrome: Concerns and Care Needs of Young Adult Patients and Their Parents
title_fullStr Growing up with Fragile X Syndrome: Concerns and Care Needs of Young Adult Patients and Their Parents
title_full_unstemmed Growing up with Fragile X Syndrome: Concerns and Care Needs of Young Adult Patients and Their Parents
title_short Growing up with Fragile X Syndrome: Concerns and Care Needs of Young Adult Patients and Their Parents
title_sort growing up with fragile x syndrome: concerns and care needs of young adult patients and their parents
topic Original Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7261272/
https://www.ncbi.nlm.nih.gov/pubmed/30879259
http://dx.doi.org/10.1007/s10803-019-03973-7
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