Key Findings: Preventive Care Services and Health Behaviors in Children with Fragile X Syndrome

Little boy in a protective helmet and in special equipment passes an obstacle course at height

In a studyexternal icon 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.

Findings

  • Only one in four children and young adults with FXS met the physical activity guidanceexternal icon from the United States Department of Health and Human Service (DHHS). DHHS recommends children 6–17 years of age get one 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 guidanceexternal icon 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 one 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.
Young sporty Asian boy hiking the mountain

About the Study

  • This study 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 FORWARDexternal icon. FORWARD is funded by the Centers for Disease Control and Prevention.

For More Information

Reference

Gilbertson KE, Jackson HL, Dziuban EJ, et al.
Preventive Care Services and Health Behaviors in Children with Fragile X Syndromeexternal icon.
Disability and Health Journal
2019 May 3. Epub ahead of print.