Original Title: Évaluation de l’Intervention comportementale intensive (ICI) pour les enfants autistes d’âge préscolaire au Québec

Authors' objectives: In Québec, a major shift is underway concerning programs and services for people with intellectual disability, physical disability or autism spectrum disorder (ID-PD-ASD). In 2017, the MSSS adopted the Plan d’action sur le TSA 2017-2022 [MSSS, 2017a]. This action plan led, in 2021, to the MSSS’s adoption of new directions, which are outlined in a document entitled Gamme de services pour les personnes ayant une déficience physique, une déficience intellectuelle ou un TSA [MSSS, 2021]. The rollout of these changes is in progress, mainly through Agir tôt. It is against this backdrop that the MSSS asked INESSS to produce a report with recommendations to answer the following decision question: Is EIBI still the intervention of choice for preschool-age children with a confirmed or presumptive diagnosis of autism?

Authors' results and conclusions: RESULTS (EVALUATION OF THE EFFICACY OF EIBI): It could not be determined from the meta-analyses if EIBI is more effective than comparator interventions in terms of the children’s problem behaviours, their school placement (i.e., the likelihood that they will attend a regular class at school, with or without support), their quality of life when they become adults, or the parents’ sense of self-efficacy. In addition, it could not be determined for which child profiles EIBI is more beneficial. Lastly, there is some uncertainty regarding the medium and long-term efficacy of EIBI because of the paucity of available data in the literature. The efficacy of EIBI when provided in conditions different from those in the studies is also uncertain. (#2 PARENTS’ EXPECTATIONS OF EIBI): The delivery of EIBI services varies across Québec. However, certain components of the intervention seem essential, such as analyzing the child’s needs, evaluating the reinforcers, identifying intervention goals, planning intervention strategies, collecting daily data, revising goals and preparing the transition to school. Furthermore, there seem to be service access and equity issues as well as staff turnover and training problems. Challenges concerning collaboration between partners, in particular, those in the health and social services system (HSSS) and those in childcare services and schools were reported as well. These organizational issues are limiting the HSSS’s ability to implement EIBI in optimal conditions. (#3 EXPLORATION OF THE COST-EFFECTIVENESS OF EIBI): According to a cost-utility analysis realized in the United Kingdom [Rodgers et al., 2020], EIBI does not appear to be a cost-effective intervention compared to comparator interventions, when considering the cost-effectiveness thresholds used in that country. This analysis is based on the hypothesis that improvements in adaptive functioning and intelligence quotient generated by EIBI would lead to improved quality of life for the child, and reduced costs due to lower consumption of school and health and social services resources over 15 years. INESSS adapted the UK economic model to the Quebec context based on: 1) the results of meta-analyses conducted on the clinical effect of EIBI on adaptive functioning and intelligence quotient and 2) data on the costs of interventions in Quebec. The exploratory analysis leads to similar results. The potential savings (school resources, health care and social services) seem to be less than the costs associated with EIBI, compared to comparator interventions. Moreover, the magnitude of the positive effects of EIBI, as suggested in the analysis, varies depending on whether the effectiveness of the intervention is maintained over time. The cost-effectiveness results should be interpreted with caution due to several limitations, in particular related to the limited availability of Québec data and the generalizability of efficacy data to current practice. The cost-utility analysis remains an estimate based on certain assumptions. CONCLUSION: The evidence does not enable us to rule on the optimal intensity of EIBI to be provided to children. The current results suggest that, compared to other interventions, EIBI is effective in the short term when provided for more than 13 hours a week for at least 12 weeks. 3) Analyze the child’s needs, measure their response to the intervention and adjust the intervention modalities accordingly (e.g., intervention strategies, intensity and duration). 4) Involve the parents in the decision-making concerning the services provided to their child (e.g., identified needs and the choice of intervention goals and reinforcers). 5) Inform and equip the parents as soon as possible to help them support their child’s development. • Train the professionals who provide services to autistic children in autism, neurodiversity and shared decision-making.

Authors' recommendations: All the data concerning the efficacy, the experiences and perceptions, the organizational issues and the cost-effectiveness were integrated. Based on this knowledge mobilization and integration, INESSS makes the following recommendations: 1) Meet autistic children’s needs and families’ expectations by providing services based on an array of evidence-based approaches and interventions, including EIBI. 2) When EIBI is provided, this should be done in the following conditions: • In the child’s natural environment (at home, in daycare or in preschool); • By an EIBI-trained professional; • With the supervision of a clinical supervisor.

Authors' methods: This report is based on the integration of information from the literature, clinical administrative data sources and stakeholder consultations. The literature data were from 11 controlled studies of the efficacy of EIBI, an economic study for documenting the costutility ratio of EIBI, seven qualitative studies of the perceptions of EIBI and 15 documents from the grey literature. The quantitative data on the efficacy of EIBI and the qualitative data concerning experiences and perceptions were synthesized by means of metaanalyses and a thematic analysis, respectively. An economic analysis meeting the inclusion criteria was identified, but since its results were not considered transferable to the Québec context, the analysis was adapted in order to explore the cost-effectiveness of EIBI in Québec, using, among other inputs, publicly available clinico-administrative data from the MSSS. Group consultations and individual interviews were held, mainly with parents of autistic children who had had access to EIBI or other services offered in the public system or private sector as well as with key informers. Lastly, an advisory committee, consisting of managers, clinical practitioners, an autistic person, parents and researchers, contributed in the project. The knowledge collected was integrated, taking into account the populational, clinical, organizational, economic and sociocultural dimensions of INESSS’s value assessment framework, and recommendations were then formulated. The Comité délibératif permanent (CDP) – Services sociaux et santé mentale deliberated on the recommendations to ensure that they were fair, reasonable and consistent with the goal of the population’s collective well-being.

Project Status: Completed

URL for project: https://www.inesss.qc.ca/publications/repertoire-des-publications/publication/evaluation-de-lintervention-comportementale-intensive-ici-pour-les-enfants-autistes-dage-prescolaire-au-quebec.html

Year Published: 2024

URL for published report: https://www.inesss.qc.ca/publications/repertoire-des-publications/publication/evaluation-de-lintervention-comportementale-intensive-ici-pour-les-enfants-autistes-dage-prescolaire-au-quebec.html

English language abstract: An English language summary is available

Publication Type: Full HTA

Country: Canada

Province: Quebec

Organisation Name: Institut national d'excellence en sante et en services sociaux

Contact Address: L'Institut national d'excellence en sante et en services sociaux (INESSS) , 2021, avenue Union, bureau 10.083, Montreal, Quebec, Canada, H3A 2S9;Tel: 1+514-873-2563, Fax: 1+514-873-1369

Contact Name: demande@inesss.qc.ca

Contact Email: demande@inesss.qc.ca

Copyright: L'Institut national d'excellence en sante et en services sociaux (INESSS)