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J Autism Dev Disord. 2019 Mar 16. doi: 10.1007/s10803-019-03973-7. [Epub ahead of print]

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

Author information

1
The Hartekamp Groupe, Care and Service Center for People with Intellectual Disabilities, Haarlem, The Netherlands.
2
ENCORE Expertise Center for Neurodevelopmental Disorders, Erasmus Medical Center, Room SP-1536, Wytemaweg 80, 3015CN, Rotterdam, The Netherlands.
3
Intellectual Disability Medicine, Department of General Practice, Erasmus Medical Center, Rotterdam, The Netherlands.
4
ASVZ, Care and Service Center for People with Intellectual Disabilities, Sliedrecht, The Netherlands.
5
Department of Child and Adolescent Psychiatry/Psychology, Erasmus Medical Center-Sophia Children's Hospital, Rotterdam, The Netherlands.
6
Department of Psychiatry, Erasmus Medical Center, Rotterdam, The Netherlands.
7
Department of General Pediatrics, Erasmus Medical Centre-Sophia Children's Hospital, Rotterdam, The Netherlands.
8
ENCORE Expertise Center for Neurodevelopmental Disorders, Erasmus Medical Center, Room SP-1536, Wytemaweg 80, 3015CN, Rotterdam, The Netherlands. a.vaneeghen@erasmusmc.nl.
9
Intellectual Disability Medicine, Department of General Practice, Erasmus Medical Center, Rotterdam, The Netherlands. a.vaneeghen@erasmusmc.nl.
10
's Heeren Loo Zorggroep, Care and Service Center for People with Intellectual Disabilities, Amersfoort, The Netherlands. a.vaneeghen@erasmusmc.nl.

Abstract

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.

KEYWORDS:

Fragile X syndrome (FXS); ICF classification; Intellectual disability; Neurodevelopmental disorders; Qualitative research; Transition

PMID:
30879259
DOI:
10.1007/s10803-019-03973-7

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