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Journal of Autism and Developmental Disorders

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10-02-2020 | Original Paper

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

Auteurs: Lauren V. Usher, Leann S. DaWalt, Jinkuk Hong, Jan S. Greenberg, Marsha R. Mailick

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 8/2020

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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Bailey, D. B., Raspa, M., Olmsted, M. Y., & Holiday, D. B. (2008). Co-occurring conditions associated with FMR1 gene variations: Findings from a national parent survey. American Journal of Medical Genetics: Part A.,146, 2060–2069.CrossRef

Baker, J. K., Seltzer, M. M., & Greenberg, J. S. (2012). Behaviour problems, maternal internalising symptoms and family relations in families of adolescents and adults with fragile X syndrome. Journal of Intellectual Disability Research,56(10), 984–995. https://doi.org/10.1111/j.1365-2788.2012.01580.x.PubMedCrossRef

Bridgemohan, C., Bauer, N. S., Nielsen, B. A., DeBattista, A., Ruch-Ross, H. S., Paul, L. B., et al. (2018). A workforce survey on developmental-behavioral pediatrics. Pediatrics. https://doi.org/10.1542/peds.2017-2164.PubMedCrossRef

Brown, W. T. (2002). The molecular biology of the fragile X mutation. In R. J. Hagerman & P. J. Hagerman (Eds.) Fragile X syndrome: Diagnosis, treatment and research (pp. 110–135). Chicago, Illinois: The Johns Hopkins University Press.

Bruininks, R. H., Bradley, H. K., Weatherman, R. F., & Woodcock, R. W. (1996). SIB-R. Rolling Meadows: Riverside Publishing Company.

Carfì, A., Antocicco, M., Brandi, V., Cipriani, C., Fiore, F., Mascia, D., et al. (2014). Characteristics of adults with down syndrome: Prevalence of age-related conditions. Frontiers in Medicine. https://doi.org/10.3389/fmed.2014.00051.PubMedPubMedCentralCrossRef

Chan, W., Smith, L. E., Greenberg, J. S., Hong, J., & Mailick, M. R. (2017). Executive functioning mediates the effect of behavioral problems on depression in mothers of children with developmental disabilities. American Journal on Intellectual and Developmental Disabilities,122(1), 11–24. https://doi.org/10.1352/1944-7558-122.1.11.PubMedPubMedCentralCrossRef

Crawford, D. C., Acuña, J. M., & Sherman, S. L. (2001). FMR1 and the fragile X syndrome: Human genome epidemiology review. Genetics in Medicine,3(5), 359.PubMedPubMedCentralCrossRef

Crawford, H., Moss, J., Stinton, C., Singla, G., & Oliver, C. (2018). Overactivity, impulsivity and repetitive behaviour in males with fragile X syndrome: Contrasting developmental trajectories in those with and without elevated autism symptoms. Journal of Intellectual Disability Research. https://doi.org/10.1111/jir.12488.PubMedCrossRef

DaWalt, L. S., Usher, L. V., Greenberg, J. S., & Mailick, M. R. (2017). Friendships and social participation as markers of quality of life of adolescents and adults with fragile X syndrome and autism. Autism,23(2), 383–393.PubMedPubMedCentralCrossRef

Demark, J. L., Feldman, M. A., & Holden, J. J. A. (2003). Behavioral relationship between autism and fragile X syndrome. American Journal on Mental Retardation,108(5), 314–326. https://doi.org/10.1352/0895-8017(2003)108%3c314:BRBAAF%3e2.0.CO;2.PubMedCrossRef

Diez-Juan, M., Schneider, A., Phillips, T., Lozano, R., Tassone, F., Solomon, M., et al. (2014). Parent-delivered touchscreen intervention for children with fragile X syndrome. Intractable & Rare Diseases Research,3(4), 166–177. https://doi.org/10.5582/irdr.2014.01026.CrossRef

Eaves, L. C., & Ho, H. H. (2008). Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorders,38(4), 739–747.PubMedCrossRef

Erickson, C. A., Kaufmann, W. E., Budimirovic, D. B., Lachiewicz, A., Haas-Givler, B., Miller, R. M., et al. (2018). Best practices in fragile X syndrome treatment development. Brain Sciences. https://doi.org/10.3390/brainsci8120224.PubMedPubMedCentralCrossRef

Esbensen, A., Bishop, S., Seltzer, M., Greenberg, J., & Taylor, J. L. (2010). Comparisons between individuals with autism spectrum disorders and individuals with Down syndrome in adulthood. American Journal of Intellectual and Developmental Disabilities,115(4), 277–290. https://doi.org/10.1352/1944-7558-115.4.277.CrossRef

Fisher, K. (2004). Health disparities and mental retardation. Journal of Nursing Scholarship,36(1), 48–53. https://doi.org/10.1111/j.1547-5069.2004.04010.x.PubMedCrossRef

Fodstad, J. C., & Matson, J. L. (2008). A comparison of feeding and mealtime problems in adults with intellectual disabilities with and without autism. Journal of Developmental and Physical Disabilities,20(6), 541–550.CrossRef

Freund, L. S., Reiss, A. L., & Abrams, M. T. (1993). Psychiatric disorders associated with fragile X in the young female. Pediatrics,91(2), 321–329.PubMed

Ghezzo, A., Salvioli, S., Solimando, M. C., Palmieri, A., Chiostergi, C., Scurti, M., et al. (2014). Age-related changes of adaptive and neuropsychological features in persons with Down Syndrome. PLoS ONE,9(11), e113111.PubMedPubMedCentralCrossRef

Grieco, J., Pulsifer, M., Seligsohn, K., Skotko, B., & Schwartz, A. (2015). Down syndrome: Cognitive and behavioral functioning across the lifespan. American Journal of Medical Genetics Part C: Seminars in Medical Genetics,169(2), 135–149.CrossRef

Gurney, J. G., McPheeters, M. L., & Davis, M. M. (2006). Parental report of health conditions and health care use among children with and without autism: National survey of children’s health. Archives of Pediatrics and Adolescent Medicine,160(8), 825–830. https://doi.org/10.1001/archpedi.160.8.825.PubMedCrossRef

Hagerman, R. J., Berry-Kravis, E., Kaufmann, W. E., Ono, M. Y., Tartaglia, N., Lachiewicz, A., et al. (2009). Advances in the treatment of fragile X syndrome. Pediatrics,123(1), 378–390. https://doi.org/10.1542/peds.2008-0317.PubMedPubMedCentralCrossRef

Harris, S. W., Hessl, D., Goodlin-Jones, B., Ferranti, J., Bacalman, S., Barbato, I., et al. (2008). Autism profiles of males with fragile X syndrome. American Journal on Mental Retardation,113(6), 427–438. https://doi.org/10.1352/2008.113:427-438.PubMedCrossRef

Hartley, S. L., Seltzer, M. M., Hong, J., Greenberg, J., Smith, L. E., Almeida, D. M., et al. (2012). Cortisol response to behavior problems in FMR1 premutation mothers of adolescents and adults with fragile X syndrome: A diathesis-stress model. International Journal of Behavioral Development,36(1), 53–61. https://doi.org/10.1177/0165025411406857.PubMedPubMedCentralCrossRef

Hartley, S. L., Seltzer, M. M., Raspa, M., Olmstead, M., Bishop, E., & Bailey, D. B., Jr. (2011). Exploring the adult life of men and women with fragile X syndrome: Results from a national survey. American Journal of Intellectual and Developmental Disabilities,116(1), 16–35.CrossRef

Hatton, D. D., Hooper, S. R., Bailey, D. B., Skinner, M. L., Sullivan, K. M., & Wheelter, A. (2002). Problem behavior in boys with fragile X syndrome. American Journal of Medical Genetics,108, 105–116.PubMedCrossRef

Health, N. I. O. (2006). Clinical guidelines on the identification, evaluation, and treatment of overweight and obesity in adults: the evidence report. National Institutes of Health; National Heart, Lung, and Blood Institute; September 1998. Publication No. 98-4083.

Heller, T., Hsieh, K., & Rimmer, J. H. (2004). Attitudinal and psychosocial outcomes of a fitness and health education program on adults with Down syndrome. American Journal on Mental Retardation,109(2), 175–185.PubMedCrossRef

Heller, T., McCubbin, J. A., Drum, C., & Peterson, J. (2011). Physical activity and nutrition health promotion interventions: What is working for people with intellectual disabilities? Intellectual and Developmental Disabilities,49(1), 26–36.PubMedCrossRef

Heller, T., & Sorensen, A. (2013). Promoting healthy aging in adults with developmental disabilities. Developmental Disabilities Research Reviews,18(1), 22–30. https://doi.org/10.1002/ddrr.1125.PubMedCrossRef

Hellings, J. A., Zarcone, J. R., Crandall, K., Wallace, D., & Schroeder, S. R. (2001). Weight gain in a controlled study of risperidone in children, adolescents and adults with mental retardation and autism. Journal of Child and Adolescent Psychopharmacology,11(3), 229–238. https://doi.org/10.1089/10445460152595559.PubMedCrossRef

Hernandez, R. N., Feinberg, R. L., Vaurio, R., Passanante, N. M., Thompson, R. E., & Kaufmann, W. E. (2009). Autism spectrum disorder in fragile X syndrome: A longitudinal evaluation. American Journal of Human Genetics,149, 1125–1137.

Hersh, J. H., & Saul, R. A. (2011). Clinical report-health supervision for children with Fragile X syndrome. American Academy of Pediatrics.,127, 994–1006.

Hustyi, K. M., Hall, S. S., Jo, B., Lightbody, A. A., & Reiss, A. L. (2014). Longitudinal trajectories of aberrant behavior in fragile X syndrome. Research in Developmental Disabilities,35(11), 2691–2701.PubMedPubMedCentralCrossRef

Hustyi, K. M., Hall, S. S., Quintin, E.-M., Chromik, L. C., Lightbody, A. A., & Reiss, A. L. (2015). The relationship between autistic symptomatology and independent living skills in adolescents and young adults with fragile X syndrome. Journal of Autism and Developmental Disorders,45(6), 1836–1844. https://doi.org/10.1007/s10803-014-2342-0.PubMedPubMedCentralCrossRef

Kagohara, D. M., van der Meer, L., Ramdoss, S., O’Reilly, M. F., Lancioni, G. E., Davis, T. N., et al. (2013). Using iPods((R)) and iPads((R)) in teaching programs for individuals with developmental disabilities: A systematic review. Research in Developmental Disabilities,34(1), 147–156. https://doi.org/10.1016/j.ridd.2012.07.027.PubMedCrossRef

Klaiman, C., Quintin, E.-M., Jo, B., Lightbody, A. A., Hazlett, H. C., Piven, J., et al. (2014). Longitudinal profiles of adaptive behavior in fragile X syndrome. Pediatrics,134, 315–324.PubMedPubMedCentralCrossRef

Klusek, J., Martin, G. E., & Losh, M. (2014). Consistency between research and clinical diagnoses of autism among boys and girls with fragile X syndrome. Journal of Intellectual Disability Research, 58(10), 940–952. https://doi.org/10.1111/jir.12121.PubMedCrossRef

Kuschner, E. S., Eisenberg, I. W., Orionzi, B., Simmons, W. K., Kenworthy, L., Martin, A., et al. (2015). A preliminary study of self-reported food selectivity in adolescents and young adults with autism spectrum disorder. Research in Autism Spectrum Disorders,15, 53–59.PubMedCrossRef

Laxman, D. J., Greenberg, J. S., DaWalt, L. S., Hong, J., Aman, M. G., & Mailick, M. (2017). Medication use by adolescents and adults with fragile x syndrome. Journal of Intellectual Disability Research. https://doi.org/10.1111/jir.12433.PubMedCrossRef

Lee, A., Ventola, P., Budimirovic, D., Berry-Kravis, E., & Visootsak, J. (2018). Clinical development of targeted fragile X syndrome treatments: An industry perspective. Brain Sciences,8(12), 214.PubMedCentralCrossRef

Lord, C., Rutter, M., & Le Couteur, A. (1994). Autism diagnostic interview-revised: A revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. Journal of Autism and Developmental Disorders,24(5), 659–685.PubMedCrossRef

Maenner, M. J., Smith, L. E., Hong, J., Makuch, R., Greenberg, J. S., & Mailick, M. R. (2013). Evaluation of an activities of daily living scale for adolescents and adults with developmental disabilities. Disability and Health Journal,6(1), 8–17. https://doi.org/10.1016/j.dhjo.2012.08.005.PubMedCrossRef

Mailick, M. R., Greenberg, J. S., Smith, L. E., Sterling, A., Brady, N., Warren, S. F., et al. (2014). Fragile X-associated disorders: How the family environment and genotype interact. In J. A. Burack & L. A. Schmidt (Eds.), Cultural and contextual perspectives on developmental risk and well-being (pp. 221–253). New York: Cambridge University Press. https://doi.org/10.1017/CBO9780511920165.015.CrossRef

Marrus, N., Veenstra-Vanderweele, J., Hellings, J. A., Stigler, K. A., Szymanski, L., King, B. H., et al. (2014). Training of child and adolescent psychiatry fellows in autism and intellectual disability. Autism,18(4), 471–475. https://doi.org/10.1177/1362361313477247.PubMedCrossRef

McDuffie, A., Oakes, A., Machalicek, W., Ma, M., Bullard, L., Nelson, S., et al. (2016). Early language intervention using distance video-teleconferencing: A pilot study of young boys with fragile X syndrome and their mothers. American Journal of Speech-Language Pathology,25(1), 46–66. https://doi.org/10.1044/2015_ajslp-14-0137.PubMedCrossRef

McLennan, Y., Polussa, J., Tassone, F., & Hagerman, R. (2011). Fragile X syndrome. Current Genomics,12(3), 216–224.PubMedPubMedCentralCrossRef

McMillan, J. A., Land, M., Jr., & Leslie, L. K. (2017). Pediatric residency education and the behavioral and mental health crisis: A call to action. Pediatrics. https://doi.org/10.1542/peds.2016-2141.PubMedCrossRef

Midlife in the United States: A National Longitudinal Study of Health and Well-Being. (2011). Retrieved from, http://midus.wisc.edu/scopeofstudy.php.

Nelson, S., McDuffie, A., Banasik, A., Tempero Feigles, R., Thurman, A. J., & Abbeduto, L. (2018). Inferential language use by school-aged boys with fragile X syndrome: Effects of a parent-implemented spoken language intervention. Journal of Communication Disorders,72, 64–76. https://doi.org/10.1016/j.jcomdis.2018.02.007.PubMedPubMedCentralCrossRef

Newby, P. K., Muller, D., Hallfrisch, J., Qiao, N., Andres, R., & Tucker, K. L. (2003). Dietary patterns and changes in body mass index and waist circumference in adults. The American Journal of Clinical Nutrition,77(6), 1417–1425.PubMedCrossRef

R Core Team. (2014). R: A language and environment for statistical computing.

Rajaratnam, A., Shergill, J., Salcedo-Arellano, M., Saldarriaga, W., Duan, X., & Hagerman, R. (2017). Fragile X syndrome and fragile X-associated disorders. F1000Research,6, 2112. https://doi.org/10.12688/f1000research.11885.1.PubMedPubMedCentralCrossRef

Ramdoss, S., Machalicek, W., Rispoli, M., Mulloy, A., Lang, R., & O’Reilly, M. (2012). Computer-based interventions to improve social and emotional skills in individuals with autism spectrum disorders: A systematic review. Developmental Neurorehabilitation,15(2), 119–135. https://doi.org/10.3109/17518423.2011.651655.PubMedCrossRef

Raspa, M., Bailey, D. B., Jr., Bishop, E., Holiday, D., & Olmsted, M. (2010). Obesity, food selectivity, and physical activity in individuals with fragile X syndrome. American Journal on Intellectual and Developmental Disabilities,115(6), 482–495. https://doi.org/10.1352/1944-7558-115.6.482.PubMedCrossRef

Raspa, M., Franco, V., Bishop, E., Wheeler, A. C., Wylie, A., & Bailey, D. B. (2018). A comparison of functional academic and daily living skills in males with fragile X syndrome with and without autism. Research in Developmental Disabilitys,78, 1–14.CrossRef

Raspa, M., Wheeler, A. C., & Riley, C. (2017). Public health literature review of fragile X syndrome. Pediatrics,139(Supplement 3), S153–S171. https://doi.org/10.1542/peds.2016-1159C.PubMedPubMedCentralCrossRef

Raudenbush, S. W., & Bryk, A. S. (2002). Hierarchical linear models: Applications and data analysis methods (Vol. 1). London: Sage.

Raudenbush, S. W., Bryk, A. S., Cheong, Y., Congdon, R., & Du Toit, M. (2011). HLM 7 [Computer software]. Lincolnwood, IL: Scientific Software International.

Rice, L. J., Gray, K. M., Howlin, P., Taffe, J., Tonge, B. J., & Einfeld, S. L. (2015). The developmental trajectory of disruptive behavior in Down syndrome, fragile X syndrome, Prader–Willi syndrome and Williams syndrome. American Journal of Medical Genetics Part C: Seminars in Medical Genetics,169(2), 182–187.CrossRef

Rutter, M., Bailey, A., Lord, C., Cianchetti, C., & Fancello, G. S. (2007). SCQ: Social Communication Questionnaire: manuale: Giunti OS.

Smith, L. E., Barker, E. T., Seltzer, M., Abbeduto, L., & Greenberg, J. (2012a). Behavioral phenotype of fragile X syndrome in adolescence and adulthood. American Journal on Intellectual and Developmental Disabilities,117(1), 1–17. https://doi.org/10.1352/1944-7558-117.1.1.PubMedPubMedCentralCrossRef

Smith, L. E., Hong, J., Greenberg, J. S., & Mailick, M. R. (2016). Change in the behavioral phenotype of adolescents and adults with FXS: Role of the family environment. Journal of Autism and Developmental Disorders,46(5), 1824–1833. https://doi.org/10.1007/s10803-016-2714-8.PubMedPubMedCentralCrossRef

Smith, L. E., Maenner, M. J., & Seltzer, M. (2012b). Developmental trajectories in adolescents and adults with autism: The case of daily living skills. Journal of the American Academy of Child and Adolescent Psychiatry,51(6), 622–631. https://doi.org/10.1016/j.jaac.2012.03.001.PubMedPubMedCentralCrossRef

Usher, L. V., DaWalt, L. S., Greenberg, J. S., & Mailick, M. R. (2019). Unaffected siblings of adolescents and adults with fragile X syndrome: Direct and buffering effects on maternal health. Journal of Family Psychology,33(4), 487–492. https://doi.org/10.1037/fam0000458.PubMedCrossRef

Utari, A., Adams, E., Berry-Kravis, E., Chavez, A., Scaggs, F., Ngotran, L., et al. (2010). Aging in fragile X syndrome. Journal of Neurodevelopmental Disorders,2(2), 70.PubMedPubMedCentralCrossRef

van Schrojenstein Lantman-De Valk, H. M. J., Metsemakers, J. F. M., Haveman, M. J., & Crebolder, H. F. J. M. (2000). Health problems in people with intellectual disability in general practice: A comparative study. Family Practice,17(5), 405–407. https://doi.org/10.1093/fampra/17.5.405.PubMedCrossRef

Vismara, L. A., McCormick, C. E. B., Shields, R., & Hessl, D. (2018). Extending the parent-delivered Early Start Denver Model to young children with fragile X syndrome. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-018-3833-1.CrossRef

Woodman, A. C. (2014). Trajectories of stress among parents of children with disabilities: A dyadic analysis. Family Relations: An Interdisciplinary Journal of Applied Family Studies,63(1), 39–54. https://doi.org/10.1111/fare.12049.CrossRef

Woodman, A. C., Smith, L. E., Greenberg, J., & Mailick, M. (2015). Change in autism symptoms and maladaptive behaviors in adolescence and adulthood: The role of positive family processes. Journal of Autism and Developmental Disorders,45(1), 111–126. https://doi.org/10.1007/s10803-014-2199-2.PubMedPubMedCentralCrossRef

Titel: 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
Auteurs: Lauren V. Usher
Leann S. DaWalt
Jinkuk Hong
Jan S. Greenberg
Marsha R. Mailick
Publicatiedatum: 10-02-2020
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 8/2020
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-020-04367-w

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