AI Article Synopsis
- Little research exists on the care needs of young adults with Fragile X Syndrome (FXS), highlighting the importance of patient-driven information for better understanding and support.
- A qualitative study involved 5 young adult patients and 33 parents, identifying concerns across 14 domains for males and 13 for females related to physical, psychological, and socio-economic issues.
- Both parents reported high stress and a lack of knowledge about FXS among adult care providers, indicating a need for gender-specific, multidisciplinary transitional care and follow-up for these patients.
Article 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.
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Source |
|---|---|
| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7261272 | PMC |
| http://dx.doi.org/10.1007/s10803-019-03973-7 | DOI Listing |
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