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ORIGINAL RESEARCH

Qualitative Exploration in Exit Interviews of Changes Observed in Clinical Trials for Individuals with Autism Spectrum Disorder Without Intellectual Disability

ORCID Icon, , , , & ORCID Icon
Pages 313-335 | Received 21 Jan 2023, Accepted 26 Oct 2023, Published online: 20 Nov 2023

References

  • American Psychiatric Association. Diagnostic and Statistical Manual of Mental DIsorders: DSM-5. 5th edn. Washington, DC: American Psychiatric Publishing; 2013.
  • Lord C, Elsabbagh M, Baird G, Veenstra-Vanderweele J. Autism spectrum disorder. The Lancet. 2018;392(10146):508–520. doi:10.1016/S0140-6736(18)31129-2
  • Park HR, Lee JM, Moon HE, et al. A short review on the current understanding of autism spectrum disorders. Exp Neurobiol. 2016;25(1):1. doi:10.5607/en.2016.25.1.1
  • NIMH. Autism Spectrum Disorder. Available from: https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml. Accessed February 27, 2020.
  • Baxter AJ, Brugha T, Erskine HE, Scheurer RW, Vos T, Scott JG. The epidemiology and global burden of autism spectrum disorders. Psychol Med. 2015;45(3):601–613. doi:10.1017/S003329171400172X
  • Brugha TS, McManus S, Bankart J, et al. Epidemiology of autism spectrum disorders in adults in the community in England. Arch Gen Psychiatry. 2011;68(5):459–465. doi:10.1001/archgenpsychiatry.2011.38
  • Zablotsky B, Black LI, Maenner MJ, Schieve LA, Blumberg SJ. Estimated prevalence of autism and other developmental disabilities following questionnaire changes in the 2014 National Health Interview Survey; 2015.
  • Pastorino GMG, Operto FF, Padovano C, et al. Social cognition in neurodevelopmental disorders and epilepsy. Front Neurol. 2021;12:658823. doi:10.3389/fneur.2021.658823
  • Kanne SM, Gerber AJ, Quirmbach LM, Sparrow SS, Cicchetti DV, Saulnier CA. The role of adaptive behavior in autism spectrum disorders: implications for functional outcome. J Autism Dev Disord. 2011;41(8):1007–1018. doi:10.1007/s10803-010-1126-4
  • Operto FF, Pastorino GMG, Scuoppo C, et al. Adaptive behavior, emotional/behavioral problems and parental stress in children with autism spectrum disorder. Front Neurosci. 2021;15:751465. doi:10.3389/fnins.2021.751465
  • Wechsler D . Wechsler Intelligence Scale for Children, Fourth Edition (WISC-IV). Pearson. 2003.
  • Operto FF, Smirni D, Scuoppo C, et al. Neuropsychological profile, emotional/behavioral problems, and parental stress in children with neurodevelopmental disorders. Brain Sci. 2021;11(5):584. doi:10.3390/brainsci11050584
  • Johnson CP, Myers SM. Identification and evaluation of children with autism spectrum disorders. Pediatrics. 2007;120(5):1183–1215. doi:10.1542/peds.2007-2361
  • Thompson C, Bölte S, Falkmer T, Girdler S, Martinuzzi A. To be understood: transitioning to adult life for people with autism spectrum disorder. PLoS One. 2018;13(3):e0194758. doi:10.1371/journal.pone.0194758
  • Howlin P, Moss P. Adults with autism spectrum disorders. Can J Psychiatry. 2012;57(5):275–283. doi:10.1177/070674371205700502
  • Ayres M, Parr JR, Rodgers J, Mason D, Avery L, Flynn D. A systematic review of quality of life of adults on the autism spectrum. Autism. 2018;22(7):774–783. doi:10.1177/1362361317714988
  • Calhoun SL, Pearl AM, Fernandez-Mendoza J, Durica KC, Mayes SD, Murray MJ. Sleep disturbances increase the impact of working memory deficits on learning problems in adolescents with high-functioning Autism spectrum disorder. J Autism Dev Disord. 2020;50:1701–1713.
  • Lecavalier L, Leone S, Wiltz J. The impact of behaviour problems on caregiver stress in young people with autism spectrum disorders. J Intellect Disabil Res. 2006;50(3):172–183. doi:10.1111/j.1365-2788.2005.00732.x
  • Kuhlthau K, Payakachat N, Delahaye J, et al. Quality of life for parents of children with autism spectrum disorders. Res Autism Spectr Disord. 2014;8(10):1339–1350. doi:10.1016/j.rasd.2014.07.002
  • Ten Hoopen LW, de Nijs PF, Duvekot J, et al. Children with an autism spectrum disorder and their caregivers: capturing health-related and care-related quality of life. J Autism Dev Disord. 2020;50(1):263–277. doi:10.1007/s10803-019-04249-w
  • Goin-Kochel RP, Myers BJ, Mackintosh VH. Parental reports on the use of treatments and therapies for children with autism spectrum disorders. Res Autism Spectr Disord. 2007;1(3):195–209. doi:10.1016/j.rasd.2006.08.006
  • Goel R, Hong JS, Findling RL, Ji NY. An update on pharmacotherapy of autism spectrum disorder in children and adolescents. Int Rev Psychiatry. 2018;30(1):78–95. doi:10.1080/09540261.2018.1458706
  • FDA. The voice of the patient. A series of reports from the U.S. Food and Drug Administration’s patient-focused drug development initiative. Autism. Public meeting: May 4, 2017; January, 2018. Available from: https://www.fda.gov/media/111099/download. Accessed October 10, 2023.
  • Hollander E, Jacob S, Jou R, et al. Balovaptan vs placebo for social communication in childhood Autism spectrum disorder: a randomized clinical trial. JAMA Psychiatry. 2022;79(8):760–769.
  • Chatham C, Taylor K, Charman T, et al. Adaptive behavior in autism: minimal clinically important differences on the Vineland‐II. Autism Res. 2018;11(2):270–283. doi:10.1002/aur.1874
  • Rofail D, Acquadro C, Izquierdo C, Regnault A, Zarit SH. Cross-cultural adaptation of the Schizophrenia Caregiver Questionnaire (SCQ) and the Caregiver Global Impression (CaGI) Scales in 11 languages. Health Qual Life Outcomes. 2015;13(1):1–10. doi:10.1186/s12955-015-0264-y
  • Busner J, Targum S. As adapted from Spearing, et al. Psychiatry Res. 2007;1997(73):159–171.
  • Busner J, Targum S. As adapted from Kay, Stanley R. Positive and Negative Symptoms in Schizophrenia:Assessment and Research. Clinical and Experimental Psychiatry, Monograph No. 5. Brunner/Mazel, 1991; 2007.
  • Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101. doi:10.1191/1478088706qp063oa
  • Prelock PJ, Nelson NW. Language and communication in autism: an integrated view. Pediatric Clinics. 2012;59(1):129–145. doi:10.1016/j.pcl.2011.10.008
  • Auyeung B, Lombardo MV, Heinrichs M, et al. Oxytocin increases eye contact during a real-time, naturalistic social interaction in males with and without autism. Transl Psychiatry. 2015;5(2):e507. doi:10.1038/tp.2014.146
  • Llaneza DC, DeLuke SV, Batista M, Crawley JN, Christodulu KV, Frye CA. Communication, interventions, and scientific advances in autism: a commentary. Physiol Behav. 2010;100(3):268–276. doi:10.1016/j.physbeh.2010.01.003