Trajectories of Change in the Behavioral and Health Phenotype of Adolescents and Adults with Fragile X Syndrome and Intellectual Disability: Longitudinal Trends Over a Decade

Abstract

This study examined trajectories of daily living skills, behavior problems, body mass index (BMI), and health conditions spanning nearly a decade in adolescents and adults with fragile X syndrome (N = 134; age range at study end = 19–49 years), examining influences of sex and autism spectrum disorder (ASD) symptoms. Hierarchical linear modeling revealed early increases in daily living skills, with decreases at older ages. Behavior problems became less severe over time, with some increases at older ages. Individuals gained weight and had increasing health problems over time. Fewer ASD symptoms were associated with greater daily living skills and fewer behavior problems at study start. This study offers some of the first prospective quantitative analyses of behavioral and health life course trajectories in FXS.

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Funding

This work was supported by the National Institute of Child Health and Human Development to the IDDRC at the University of North Carolina (P30 HD003100-S1) to support a Fragile X Research Center at three additional sites (Research Triangle Institute International, the University of Wisconsin-Madison and University of Kansas). The present analysis was based on data collected by the UW-Madison Waisman Center site (M. Mailick, PI). Additional support was provided by the National Institute of Child Health and Human Development (T32 HD07489 and R01 HD082110, M. Mailick, PI) and the Waisman Center IDDRC (P30 HD03352 and U54 HD090256, A. Messing, PI).

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LVU performed the statistical analysis, participated in interpretation of the data, and drafted the manuscript; LSD participated in study design and coordination, performed the measurement, participated in the statistical analysis, participated in interpretation of the data, and helped to draft the manuscript; JH participated in the statistical analysis, participated in interpretation of the data, and helped to draft the manuscript; JSG obtained funding, conceived of the study, participated in study design and coordination, participated in interpretation of the data, and helped to draft the manuscript; MRM obtained funding, conceived of the study, participated in study design and coordination, participated in interpretation of the data, and helped to draft the manuscript. All authors read and approved the final manuscript.

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Correspondence to Lauren V. Usher.

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Appendix

Appendix

See Table 7.

Table 7 List of health problems

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Usher, L.V., DaWalt, L.S., Hong, J. et al. Trajectories of Change in the Behavioral and Health Phenotype of Adolescents and Adults with Fragile X Syndrome and Intellectual Disability: Longitudinal Trends Over a Decade. J Autism Dev Disord 50, 2779–2792 (2020). https://doi.org/10.1007/s10803-020-04367-w

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Keywords

  • Fragile X syndrome
  • Behavioral phenotype
  • Health phenotype
  • Adolescents
  • Adults