The proportion of young patients with fragile X syndrome who meet basic recommendations for preventive care varies depending on their health condition and demographics, according to a recent study.
The study, “Preventive Care Services and Health Behaviors in Children with Fragile X Syndrome,” was published in the Disability and Health Journal.
Although people with developmental disabilities, including fragile X, may receive adequate regular and specialized health care, there is evidence that many do not receive sufficient preventive care services. These include dental care, immunizations (vaccines), and sufficient levels of physical activity.
“Preventive care has several different components including medical care, screening, and education that help adults and children lead healthier lives. There are specific guidelines for children to help ensure proper growth and development, as well as to prevent disease,” the researchers said.
Different expert groups — including the American Academy of Pediatric Dentistry, the Centers for Disease Control and Prevention, and the Department of Health and Human Services — strongly recommend preventative care for children and adults. Infants should begin seeing a dentist at the time of their first tooth eruption or by one year of age, followed by regular appointments every six months. There are 15 vaccines of varying doses that are recommended between birth and age 18, including annual influenza vaccinations for everyone older than six months. Healthcare providers recommend that all children ages 6 to 17 should participate in one hour of aerobic, muscle-strengthening, and bone strengthening physical activity every day. Adults, meanwhile, need approximately 150 minutes — 2.5 hours — of physical activity each week, clinicians say.
To understand whether young fragile X patients receive adequate preventive care services, investigators analyzed data from the Fragile X Online Registry with Accessible Research Database. FORWARD, supported by the CDC, is a multisite observational study that began collecting data in 2012 from 25 fragile X clinics across the U.S.
This database includes demographic data, open to individuals with fragile X and their family members. It also includes data from a parent form, a clinician form, and three Standardized Behavioral Assessments, which are open only to those with full mutation fragile X.
The study used demographic data, as well as information from the parent and clinician forms, culled from 2012 to 2015. From the initial 1,438 individuals in the FORWARD registry, a total 406 participants less than 21 years of age were included in the study. Three-quarters of the study population were male, and over half were under 11 years of age. There was a higher proportion of non-Hispanic whites (74.6%) and Hispanics (13.3%) than participants of other racial and ethnic groups.
Parents’ annual income was slightly skewed toward higher income brackets. Most had private health insurance, indicating sufficient resources to devote to the child’s health care. Five participants without health insurance (1.2%) were excluded from any further analysis due to their small sample size.
The investigators found that, overall, 74.6% of those with fragile X met dental care guidelines, 55.4% met influenza vaccination recommendations, 92.1% met immunization guidelines, and 24.4% engaged in sufficient physical activity. Almost all (98.0%) participants reported having a regular pediatrician or doctor.
The analysis found that was uneven access to preventive care services depending on the demographic and health characteristics of the patients. For example, compared with children between ages 6 and 10, younger children were less likely to have seen a dentist, as recommended.
Young adults — between 16 and 20 years of age — were less likely to have received the recommended immunizations, or to have complied with suggested physical activity levels. Additionally, males and younger children were more likely to have received the influenza vaccine compared with females and older children. Black participants also were less likely to have received an influenza vaccination than white participants.
Patients with autism spectrum disorder (ASD) were less likely to engage in recommended levels of physical activity when compared to those without ASD. Meanwhile, individuals with hypersensitivity were more likely to have sufficient physical activity than unaffected individuals, the study found.
“The proportion of young people with [fragile X] that meet basic recommendations in preventive care guidelines varies according to health condition and demographic characteristics. This proportion could be increased for some groups, particularly in the cases of influenza vaccination and physical activity,” the researchers said.
“Health providers may wish to use these findings to target gaps in care identified for each services and focus on educating parents on reaching recommended preventive care objectives,” they concluded.
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