Publications by authors named "C R Lincken"
J Autism Dev Disord
June 2020
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.
