What to know
In a study appearing in Disability and Health Journal, researchers from the Centers for Disease Control and Prevention (CDC) and other organizations present data on preventive services received by children and young adults with fragile X syndrome (FXS). This research can help clinicians identify preventive care services that their patients with FXS may need.
Study overview
Preventive care services and health behaviors in children with fragile X syndrome
About this Study
This study in Disability and Health Journal is based on a survey of parents of children and young adults with FXS.
The survey of parents was fielded as part of the Fragile X Online Registry with Accessible Research Database, known as FORWARD. This registry and database was developed through funding from CDC.
The survey of parents was fielded as part of the Fragile X Online Registry with Accessible Research Database, known as FORWARD. This registry and database was developed through funding from CDC.
Key findings
- Only one in four children and young adults with FXS met the physical activity guidance from the United States Department of Health and Human Service (DHHS). DHHS recommends children 6–17 years of age get 1 hour of physical activity every day, while adults need about 2.5 hours per week.
- Slightly more than half of the children and young adults with FXS met the CDC recommendation for an annual influenza vaccination.
- Almost three out of four children and young adults with FXS met dental care guidance from the American Academy of Pediatric Dentistry (AAPD). The AAPD recommends children have their first dental exam at the time of their first tooth eruption, or by 1 year of age, followed by regular exams every 6 months for children and adults.
- About nine out of ten children and young adults with FXS received the immunizations recommended by CDC between birth and 18 years of age.
Suggested citation
Gilbertson KE, Jackson HL, Dziuban EJ, Sherman SL, Berry-Kravis EM, Erickson CA, Valdez R. Preventive care services and health behaviors in children with fragile X syndrome. Disabil Health J. 2019 Oct;12(4):564-573.