Preventive care services and health behaviors in children with fragile X syndrome

• Type of Material: Article
• Authors: Kendra E. Gilbertson, Centers for Disease Control and Prevention; Hannah L. Jackson, Centers for Disease Control and Prevention; Eric Dziuban, Emory University; Stephanie Sherman, Emory University; Elizabeth M. Berry-Kravis, Rush University; Craig A. Erickson, University of Cincinnati; Rodolfo Valdez, Centers for Disease Control and Prevention
• Language: English
• Date: 2019-10-01
• Publisher: ELSEVIER SCIENCE INC
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2019 Elsevier Inc. All rights reserved.
• License: Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International
• Final Published Version (URL): http://dx.doi.org/10.1016/j.dhjo.2019.04.005
• Title of Journal or Parent Work: DISABILITY AND HEALTH JOURNAL
• Volume: 12
• Issue: 4
• Start Page: 564
• End Page: 573
• Grant/Funding Information: The FORWARD project was supported by the Cooperative Agreement Numbers DD000753, DD001185, DD001186, DD001190, DD001188, and DD001189 funded by the Centers for Disease Control and Prevention. The findings and conclusions in this publication are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention. Elizabeth Berry Kravis, MD, PhD, Milen Velinov, MD, PhD, Nicole Tartaglia, MD, Craig Erikson, MD, and Howard Andrews, PhD were PIs on the study.
• Keywords: YOUTH; IMMUNIZATION; DISABILITIES; Dental care; Vaccination; NEEDS; ORAL-HEALTH; DISPARITIES; Flu shot; Public, Environmental & Occupational Health; Fragile X; Science & Technology; Health Policy & Services; RECOMMENDED ADOLESCENT VACCINES; Life Sciences & Biomedicine; Health Care Sciences & Services; VACCINATION COVERAGE; Rehabilitation; PHYSICAL-ACTIVITY; Exercise; DENTAL-CARE

Abstract

Background: This is the first description of preventive care services specifically received by children and young adults with fragile X syndrome (FXS). We compare these rates to those of other pediatric populations and identify care disparities within our cohort. Objective: Describe the frequency of preventive care services and health behaviors by young people with FXS, and identify disparities in care. Methods: We assessed four preventive care outcomes and the total number of preventive care guidelines met among individuals under 21 years from the ongoing Fragile X Online Registry with Accessible Research Database (N = 406) using data from 2012 to 2015. We used adjusted odds ratios (AORs) from multiple logistic regression models to describe associations between demographic factors and preventive care outcomes. Results: Seventy-five percent of our sample met dental care guidelines, 55.4% met influenza vaccination guidelines, 92.1% met immunization guidelines, and 24.4% met physical activity (PA) guidelines. Compared to children six to 10 years, younger children were less likely to have seen a dentist as recommended (AOR: 0.26) and young adults aged 16–20 were less likely to have received immunizations (AOR: 0.14) or to have engaged in recommended PA (AOR: 0.29). Black participants (AOR: 0.25) were less likely to have received an influenza vaccination than white participants. Individuals with autism (AOR: 0.25) were less likely to have sufficient PA, while individuals with hypersensitivity were more likely to have sufficient PA (AOR: 2.37) than unaffected individuals. Conclusions: The proportion of young people with FXS 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.