Developing a Comprehensive Evidence-Based Service Package for Toddlers with Autism in a Low Resource Setting: Early Detection, Early Intervention, and Care Coordination

  • Hadi Zarafshan Psychiatry and Psychology Research Center, Tehran University of Medical Sciences
  • Mohammad Reza Mohammadi
  • Farid Abolhassani
  • Seyed Abbas Motevalian
  • Vandad Sharifi
Keywords: Autism; Care coordination; Early detection; Early intervention

Abstract

Objective: The number of children with autism, who have many unmet needs, is increasing dramatically. However, the existing evidence shows that early identification and intervention are effective in reducing the later costs and burdens of autism spectrum disorder (ASD). Thus, the present study aimed to develop evidence-based services for children with autism in Iran to reduce its impacts on the affected children and their families and to decrease its burden on the society. Method: A 3-step study was conducted based on a modification of the Replicating Effective Programs (REP) framework (step 1: need assessment and situation analysis; step 2: identifying current evidence-based services; step 3: designing the first draft of the package and its core elements). Each step was conducted by a specific methodology. Results: By considering the obtained data, it was found that a package of services with 4 core components to respond to the perceived needs in Iran was needed: (1) early detection of at-risk children; (2) care coordination and facilitation of access to current services; (3) implementation of an evidence-based early intervention program; and (4) training interventionists using an effective educational framework based on evidence-based material. Conclusion: REP framework was used in the present study, which has been shown to be effective in adapting and implementing health care services. By considering the preconditions of REP, a comprehensive package of services, with 4 components was designed for toddlers with autism in Iran. The next step will be to study this package using a multicenter hybrid effectiveness-implementation randomized control trial.

References

Association, A.P., Diagnostic and statistical manual of mental disorders (DSM-5®). 2013: American Psychiatric Pub.
2. Xu, G., et al., Prevalence of autism spectrum disorder among US children and adolescents, 2014-2016. JAMA - Journal of the American Medical Association, 2018. 319(1): p. 81-82.
3. Leslie, D.L., Understanding the Costs of Autism Services. Journal of the American Academy of Child & Adolescent Psychiatry, 2017. 56(9): p. 727-728.
4. Buescher, A.V., et al., Costs of autism spectrum disorders in the United Kingdom and the United States. JAMA Pediatr, 2014. 168(8): p. 721-8.
5. Eikeseth, S., et al., Outcome for children with autism receiving early and intensive behavioral intervention in mainstream preschool and kindergarten settings. Research in Autism Spectrum Disorders, 2012. 6(2): p. 829-835.
6. Granpeesheh, D., et al., The effects of age and treatment intensity on behavioral intervention outcomes for children with autism spectrum disorders. Research in Autism Spectrum Disorders, 2009. 3(4): p. 1014-1022.
7. Peters-Scheffer, N., et al., Cost comparison of early intensive behavioral intervention and treatment as usual for children with autism spectrum disorder in the Netherlands. Research in Developmental Disabilities, 2012. 33(6): p. 1763-1772.
8. Cidav, Z., et al., Cost offset associated with Early Start Denver Model for children with autism. Journal of the American Academy of Child & Adolescent Psychiatry, 2017. 56(9): p. 777-783.
9. Ghanizadeh, A., A preliminary study on screening prevalence of pervasive developmental disorder in schoolchildren in Iran. Journal of autism and developmental disorders, 2008. 38(4): p. 759-763.
10. Samadi, S.A., A. Mahmoodizadeh, and R. McConkey, A national study of the prevalence of autism among five-year-old children in Iran. Autism, 2012. 16(1): p. 5-14.
11. Ahmadi, A., H.A. Zalani, and K. Amrai, The needs of Iranian families of children with autism spectrum disorder, cross-cultural study. Procedia-Social and Behavioral Sciences, 2011. 15: p. 321-326.
12. Samadi, S.A., R. McConkey, and G. Kelly, The information and support needs of Iranian parents of children with autism spectrum disorders. Early Child Development and Care, 2012. 182(11): p. 1439-1453.
13. Kilbourne, A.M., et al., Implementing evidence-based interventions in health care: application of the replicating effective programs framework. Implementation Science, 2007. 2(1): p. 42.
14. Kilbourne, A.M., et al., Cluster randomized adaptive implementation trial comparing a standard versus enhanced implementation intervention to improve uptake of an effective re-engagement program for patients with serious mental illness. Implementation Science, 2013. 8(1): p. 136.
15. Mutamba, B.B., et al., Contextualization of psychological treatments for government health systems in low-resource settings: group interpersonal psychotherapy for caregivers of children with nodding syndrome in Uganda. Implementation Science, 2018. 13(1): p. 90.
16. Pellicano, L., A. Dinsmore, and T. Charman, A Future Made Together: Shaping autism research in the UK. 2013.
17. Zarafshan, H., et al., Autism Research in Iran: A Scientometric Study. Iranian Journal of Psychiatry and Behavioral Sciences, 2017. 11(2).
18. Mohammadi, M.R., et al., Current Status of Health and Social Services for Children with Autism in Iran: Parents’ Perspectives. Iranian Journal of Psychiatry, 2019. 14(1): p. 76-83.
19. Organization, W.H., Autism spectrum disorders & other developmental disorders. From raising awareness to building capacity (Meeting Report). 2013, Retrieved from Geneva, Switzerland.
20. Daniels, A.M., et al., Approaches to enhancing the early detection of autism spectrum disorders: a systematic review of the literature. Journal of the American Academy of Child & Adolescent Psychiatry, 2014. 53(2): p. 141-152.
21. Odom, S.L., et al., Evaluation of comprehensive treatment models for individuals with autism spectrum disorders. Journal of autism and developmental disorders, 2010. 40(4): p. 425-436.
22. Reichow, B., et al., Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). The Cochrane Library, 2012.
23. Ryberg, K.H., Evidence for the implementation of the Early Start Denver Model for young children with autism spectrum disorder. Journal of the American Psychiatric Nurses Association, 2015. 21(5): p. 327-337.
24. Allison, C., B. Auyeung, and S. Baron-Cohen, Toward brief “red flags” for autism screening: the short autism spectrum quotient and the short quantitative checklist in 1,000 cases and 3,000 controls. Journal of the American Academy of Child & Adolescent Psychiatry, 2012. 51(2): p. 202-212. e7.
25. Magiati, I., et al., The psychometric properties of the Quantitative-Checklist for Autism in Toddlers (Q-CHAT) as a measure of autistic traits in a community sample of Singaporean infants and toddlers. Molecular autism, 2015. 6(1): p. 40.
26. Allison, C., et al., The Q-CHAT (Quantitative CHecklist for Autism in Toddlers): A normally distributed quantitative measure of autistic traits at 18–24 months of age: Preliminary report. Journal of autism and developmental disorders, 2008. 38(8): p. 1414-1425.
27. Mohammadian, M., et al., Evaluating reliability and predictive validity of the Persian translation of quantitative checklist for autism in toddlers (Q-CHAT). Iranian journal of psychiatry, 2015. 10(1): p. 64.
28. Kim, S.H., et al., Multisite study of new autism diagnostic interview-revised (ADI-R) algorithms for toddlers and young preschoolers. Journal of autism and developmental disorders, 2013. 43(7): p. 1527-1538.
29. Ward-King, J., et al., Brief report: telephone administration of the autism diagnostic interview—revised: reliability and suitability for use in research. Journal of autism and developmental disorders, 2010. 40(10): p. 1285-1290.
30. Kilbourne, A.M., et al., Enhancing outreach for persons with serious mental illness: 12-month results from a cluster randomized trial of an adaptive implementation strategy. Implementation Science, 2014. 9(1): p. 163.
31. Koegel, L.K., et al., The importance of early identification and intervention for children with or at risk for autism spectrum disorders. International journal of speech-language pathology, 2014. 16(1): p. 50-56.
32. Landa, R.J., Efficacy of early interventions for infants and young children with, and at risk for, autism spectrum disorders. International Review of Psychiatry, 2018. 30(1): p. 25-39.
33. Curran, G.M., et al., Effectiveness-implementation hybrid designs: combining elements of clinical effectiveness and implementation research to enhance public health impact. Medical care, 2012. 50(3): p. 217.
Published
2019-05-08
How to Cite
1.
Zarafshan H, Mohammadi MR, Abolhassani F, Motevalian SA, Sharifi V. Developing a Comprehensive Evidence-Based Service Package for Toddlers with Autism in a Low Resource Setting: Early Detection, Early Intervention, and Care Coordination. Iran J Psychiatry. 14(2):120-129.
Section
Original Article(s)