Prevalence and Correlates of Autism Spectrum Disorders in Quebec

Diallo, Fatoumata; Fombonne, Éric; Kisely, Steve; Rochette, Louis; Vasiliadis, Helen Maria; Vanasse, Alain; Noiseux, Manon; Pelletier, Éric; Johanne, Renaud; St-Laurent, Danielle; Lesage, Alain

doi:10.1177/0706743717737031

Cited by 59 publications

(18 citation statements)

References 38 publications

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“…Our estimate of 1.14% is broadly in line with recent studies (Arora et al., ; Baio et al., ; Diallo et al., ) and reviews (Elsabbagh et al., ; Hill et al., ; Meyers et al., ). Compared to previous regional surveys (see Table ), our more comprehensive methodology resulted in a much higher estimate.…”

Section: Discussionsupporting

confidence: 92%

Prevalence and correlates of autism spectrum disorder in Qatar: a national study

Alshaban

Al‐Dosari

Al-Shammari

et al. 2019

Child Psychology Psychiatry

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BackgroundFew epidemiological data on autism spectrum disorders (ASD) exist for Arabic countries. We conducted the first survey of ASD in Qatar, a population with high consanguinity level.MethodsThis cross‐sectional survey was conducted from 2015 to 2018 in Qatar school‐age children (N = 176,960) from national and immigrant families. Children diagnosed with ASD were identified through medical centers and special needs schools. Records were abstracted and supplemented by parental interviews. Additionally, children attending 93 schools were screened; ASD case status was confirmed in random samples of screen‐positive and screen‐negative children. Prevalence was estimated after taking into account different sampling fractions and participation rates at each survey phase.ResultsOne thousand three hundred and ninety‐three children already diagnosed with ASD were identified. Among 9,074 school survey participants, 760 screen‐negative children and 163 screen‐positive children were evaluated; 17 were confirmed to have ASD including five children newly diagnosed. Prevalence was 1.14% (95% CI: 0.89–1.46) among 6‐ to 11‐year‐olds. ASD was reported in full siblings/extended relatives in 5.9% (95% CI: 0.042–0.080)/11.8% (95% CI: 0.095–0.146) families. First‐degree consanguinity in Qatari cases (45%) was comparable to known population levels. Among 844 ASD cases (mean age: 7.2 years; 81% male), most children experienced language delay (words: 75.1%; phrase speech: 91.4%), and 19.4% reported developmental regression. At the time of the survey, persisting deficits in expressive language (19.4%) and peer interactions (14.0%) were reported in conjunction with behavioral problems (ADHD: 30.2%; anxiety: 11.0%). In multivariate logistic regression, ASD severity was associated with parental consanguinity, gestational diabetes, delay in walking, and developmental regression.ConclusionsASD prevalence in Qatar is consistent with recent international studies. The methods employed in this study should help designing comparable surveys in the region. We estimated that 187,000 youths under age 20 have ASD in Gulf countries. This figure should assist in planning health and educational services for a young, fast‐growing population.

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Section: Discussionsupporting

confidence: 92%

Prevalence and correlates of autism spectrum disorder in Qatar: a national study

Alshaban

Al‐Dosari

Al-Shammari

et al. 2019

Child Psychology Psychiatry

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“…Overall, children with NDDs utilize health care services more significantly with three times greater the number of hospitalizations and two times the number of physician visits than the general paediatric population (Arim et al, 2017). Children require frequent supports from inpatient and outpatient medical, and community-based systems, including primary care, emergency care, rehabilitation, and government disability support (Arim et al, 2017;Diallo, et al, 2018;Miller, Shen, & Mâsse, 2016). However, current practice models provide disjointed fragmented care because of highly compartmentalized health and social systems (Brodeur, Chouinard, & Hudon, 2017).…”

Section: Introductionmentioning

confidence: 99%

Social isolation and exclusion: the parents' experience of caring for children with rare neurodevelopmental disorders

Currie

Szabo

2020

International Journal of Qualitative Studies on Health and Well

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Purpose: The experiences of parents caring for the complex care needs of children with rare neurodevelopmental disorders are not well understood. Parents struggle to meet their children's medical, behavioural, and social needs within and across health, social, and family systems. The purpose of this study was to explore the parents' experience of caring for medical and social care needs for children with rare neurodevelopmental disorders. Methods: Hermeneutic phenomenology was used for the data analysis. Fifteen parents participated in semi-structured interviews. Results: Interpretive analysis revealed four insights: (a) difference in children's behaviours and disease manifestations led to misunderstanding and vulnerability within social domains, (b) social taboo and stigma were experienced with rarity, (c) fragmented disconnected care from health and social systems impacted families, and (d) incomprehension from friends and family occurs when managing daily care. Conclusion: New interpretations and increased understanding of parents' experiences are required in supporting parents caring for children with complex needs. Understanding parents' experiences could reduce social isolation and exclusion, and mitigate appropriate and supportive practices and services within and across medical, social, and family systems.

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“…Consistent with a national and global trend, prevalence estimates have risen steadily in Quebec from 15/10,000 in 2001 to 122/10,000 in 2015 (Diallo et al 2017). Reasons for apparent rise include, among others, a greater awareness of the condition and improved access to services (Elsabbagh et al 2012).…”

Section: Introductionmentioning

confidence: 85%

Progress and gaps in Quebec’s autism policy: a comprehensive review and thematic analysis

Zeidan

Shikako‐Thomas

Ehsan

et al. 2019

Can J Public Health

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Objective Consistent with a national and global trend, prevalence estimates of autism have risen steadily in Quebec, causing concerns regarding quality and availability of diagnostic and intervention services as well as policies guiding service delivery and their efficacy. We conducted an analysis of Quebec's autism policies to determine recent advances, challenges and gaps in the planning and delivery of provincial autism services. Methods We identify autism policy priorities in Quebec through a comprehensive review and a thematic analysis of past and present policies, consider their compliance with national and international human rights and health frameworks and identify policy gaps. Results Autism policies articulated at a provincial level in Quebec are comprehensive, well grounded in international and national frameworks and considerate of existing barriers in the systems. Quebec policies reflect long-standing recognition of many barriers affecting service utilization and quality. Root cause of challenges currently confronting the policy environment in Quebec includes limitations in: specific measures to enhance a person-centred approach across the lifespan, evaluation of economic costs associated with autism, utilization of research evidence, and enactment of policies. Conclusion Early intervention services, building capacity in existing resources through training programs, and integrating research through research translation initiatives can help the Québec government improve the quality and efficacy of services while reducing long-term costs to the systems and promoting quality of life for individuals with autism and their families. Résumé Objectif En accord avec la tendance nationale et internationale, le taux de prévalence de l'autisme a augmenté de façon continue au Québec, suscitant des inquiétudes concernant la qualité et la disponibilité des services de diagnostic et d'intervention, ainsi que l'efficacité des politiques de prestation. On propose une analyse des politiques en matière d'autisme afin de déterminer les récentes avancées, défis, et failles dans la planification et la prestation des services et soins en autisme au Québec.

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Prevalence and Correlates of Autism Spectrum Disorders in Quebec

Abstract: Information derived from this database could support and monitor development of better medical services coordination and shared care to meet the continuous and changing needs of patients and families over time.

Cited by 59 publications

References 38 publications

Prevalence and correlates of autism spectrum disorder in Qatar: a national study

Prevalence and correlates of autism spectrum disorder in Qatar: a national study

Social isolation and exclusion: the parents' experience of caring for children with rare neurodevelopmental disorders

Progress and gaps in Quebec’s autism policy: a comprehensive review and thematic analysis

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