Fetal alcohol spectrum disorder diagnostic clinic capacity in Canadian Provinces and territories.

This study investigated the diagnostic capacity for Fetal Alcohol Spectrum Disorder (FASD) in multidisciplinary clinics across several provincial and one territorial jurisdictions of Canada: Alberta, British Columbia, Manitoba, Ontario and Northwest Territories. The data were collected directly from clinics capable of providing diagnoses of FASD and examined annual capacity for the assessment and diagnosis of FASD per year from 2015 to 2019. In total, 58 FASD diagnostic clinics were identified and 33 clinics participated in this survey. The study identified inadequate FASD diagnostic capacity in all participating jurisdictions. Based on the findings and the current population sizes, it is estimated that 98% of individuals with FASD are undiagnosed or misdiagnosed in Canada. Wait times for FASD diagnosis ranged from 1 month to 4.5 years across participating jurisdictions. The annual FASD diagnostic capacity in the select provinces and territories require at least a 67-fold increase per year.

Responding to the Unique Complexities of Fetal Alcohol Spectrum Disorder.

Fetal alcohol spectrum disorder (FASD) is a multifaceted disability, characterized not only by brain- and body-based challenges, but also high rates of environmental adversity, lifelong difficulties with daily living, and distinct sociocultural considerations. FASD is one of the most common neurodevelopmental disabilities in the Western world and associated with significant social and economic costs. It is important to understand the complexities of FASD and the ways in which FASD requires unique consideration in research, practice, and policy. In this article, we discuss our perspectives on factors that distinguish FASD from other disabilities in terms of complexity, co-occurrence, and magnitude. We provide an overview of select literature related to FASD as a socially rooted disability with intergenerational impacts and multiple layers of stigma. These social issues are intertwined with notable experiences of adversity across the lifespan and high rates of co-occurring health concerns for individuals with FASD, all of which present unique challenges for individuals, caregivers, families, service providers, and policy makers. Understanding these factors is the first step in developing and implementing specialized initiatives in support of positive outcomes for individuals with FASD and their families. Future directions are proposed for advancing research, practice, and policy, and responding to the unique complexities of FASD.

Collaborative Action on Fetal Alcohol Spectrum Disorder Prevention: Principles for Enacting the Truth and Reconciliation Commission Call to Action #33.

The association between fetal alcohol spectrum disorder (FASD), residential schools and subsequent assimilatory policies in Canada is of such significance that it was included in the groundbreaking Truth and Reconciliation Commission of Canada's Final Report through Call to Action #33, which focuses on collaboratively developing FASD prevention programs in Indigenous communities. A consensus statement with eight tenets for enacting Call to Action #33 was co-developed in May 2017 using a Two-Eyed Seeing approach during and after a meeting on Indigenous approaches to FASD prevention held in Canada. The consensus statement provides guidance for creating community-based, culture-led FASD prevention programs in Indigenous communities. The eight tenets reflect the diverse perspectives of Indigenous and non-Indigenous participants, are grounded in available research evidence, and align with Indigenous worldviews and wellness models. This paper uses the consensus statement and eight exemplary FASD prevention programs from Indigenous communities and organizations across Canada to highlight identity, culture, and relationships as central elements of FASD prevention in Indigenous communities. The consensus statement provides guidance for developing community- and culture-led FASD prevention programs and highlights the importance of Indigenous knowledge systems in developing and researching FASD prevention in, and with, Indigenous communities.

Deferred diagnosis in children assessed for fetal alcohol spectrum disorder.

Early intervention for individuals with FASD is paramount, thus exploring factors that affect the diagnostic process is critical. This process can be complicated by challenges gathering background information, accurately evaluating higher-level cognitive skills across ages, and teasing apart the impact of life adversities from the effects of prenatal alcohol exposure. This study is a retrospective file review of 154 children (44% female; mean age 8.4 years, range 1.0 to 16.9) deferred at their first FASD assessment, and 51 (43% female; mean 9.9 years, range 2.7 to 17.2) who returned for a second assessment. Data was collected from three Canadian FASD clinics to explore reasons for deferral, the clinical profile of deferred children, why some returning children were diagnosed while others were not, and changes between assessments. Results suggest that deferred children initially lacked evidence of abnormalities sufficient for a diagnosis, presented with areas of relative neurobehavioral strength and difficulty, and children eventually diagnosed with FASD showed significantly more impaired brain function (p < 0.001, ηp2 = 0.547), postnatal risk (p = 0.021, ηp2 = 0.121), and comorbidities (p = 0.038, ηp2 = 0.085) than undiagnosed children. These findings provide important insights into the process of clinical assessment for FASD.

Working memory and visuospatial deficits correlate with oculomotor control in children with fetal alcohol spectrum disorder.

Previous studies have demonstrated that children with Fetal Alcohol Spectrum Disorder (FASD) exhibit deficits in measures of eye movement control that probe aspects of visuospatial processing and working memory. The goal of the present study was to examine, in a large cohort of children with FASD, prenatal alcohol exposure (PAE) but not FASD, and typically developing control children, the relationship between performance in eye movement tasks and standardized psychometric tests that assess visuospatial processing and working memory. Participants for this dataset were drawn from a large, multi-site investigation, and included children and adolescents aged 5-17 years diagnosed with an FASD (n=71), those with PAE but no clinical FASD diagnosis (n=20), and typically developing controls (n=111). Participants completed a neurobehavioral test battery and a series of saccadic eye movement tasks. The FASD group performed worse than controls on the psychometric and eye movement measures of working memory and visuospatial skills. Within the FASD group, digit recall, block recall, and animal sorting were negatively correlated with sequence errors on the memory-guided task, and arrows was negatively correlated with prosaccade endpoint error. There were no significant correlations in the control group. These data suggest that psychometric tests and eye movement control tasks may assess similar domains of cognitive function, and these assessment tools may be measuring overlapping brain regions damaged due to prenatal alcohol exposure. The results of this study demonstrate that eye movement control tasks directly relate to outcome measures obtained with psychometric tests and are able to assess multiple domains of cognition simultaneously, thereby allowing for an efficient and accurate assessment.

Deficits in response inhibition correlate with oculomotor control in children with fetal alcohol spectrum disorder and prenatal alcohol exposure.

Children with fetal alcohol spectrum disorder (FASD) or prenatal alcohol exposure (PAE) frequently exhibit impairment on tasks measuring inhibition. The objective of this study was to determine if a performance-based relationship exists between psychometric tests and eye movement tasks in children with FASD. Participants for this dataset were aged 5-17 years and included those diagnosed with an FASD (n=72), those with PAE but no clinical FASD diagnosis (n=21), and typically developing controls (n=139). Participants completed a neurobehavioral test battery, which included the NEPSY-II subtests of auditory attention, response set, and inhibition. Each participant completed a series of saccadic eye movement tasks, which included the antisaccade and memory-guided tasks. Both the FASD and the PAE groups performed worse than controls on the subtest measures of attention and inhibition. Compared with controls, the FASD group made more errors on the antisaccade and memory-guided tasks. Among the combined FASD/PAE group, inhibition and switching errors were negatively correlated with direction errors on the antisaccade task but not on the memory-guided task. There were no significant correlations in the control group. These data suggests that response inhibition deficits in children with FASD/PAE are associated with difficulty controlling saccadic eye movements which may point to overlapping brain regions damaged by prenatal alcohol exposure. The results of this study demonstrate that eye movement control tasks directly relate to outcome measures obtained with psychometric tests that are used during FASD diagnosis, and may therefore help with early identification of children who would benefit from a multidisciplinary diagnostic assessment.

Clinical correlates of fetal alcohol spectrum disorder among diagnosed individuals in a rural diagnostic clinic.

BACKGROUND: Diagnosis of fetal alcohol spectrum disorder (FASD) is relevant for the reduction of long term adverse sequalae. However, the diagnostic guidelines require a multidisciplinary approach which may hinder access to diagnostic and management services. Most diagnostic clinics are located in urban areas. There is less emphasis on the operations, capacities, and outcomes from rural diagnostic clinics. METHODS: Over a ten and half years of clinic operations to diagnose children and subsequently adults, all consenting adults provided answers to interviews, participated in measurements and other diagnostic procedures. Information was collected on their contact with mental health services. Comparison of the findings with those from other established clinics included variables relevant to outcome measures. RESULTS: 375 individuals were referred, assessed and diagnosed according to the existing guidelines for FASD diagnosis. Alcohol-related neurodevelopmental disorder (ARND), which was closely associated with age, was the most prevalent FASD diagnosis. One third of those diagnosed had IQ above the average range and ADHD was the most relevant clinical correlate. The diagnostic clinic was able to complete diagnosis on potentially 37.5% of likely affected individuals. CONCLUSION: FASD can be diagnosed in children and adults in a rural setting. ADHD and other mental disorders should be a focus for treatment in affected individuals especially adults. It is important to consider the impact of age on the outcome of FASD. To increase diagnostic capacity, clinic operations could be modelled similarly.

Rural FASD diagnostic services model: Lakeland Centre for fetal alcohol spectrum disorder.

There are few FASD multi-disciplinary diagnostic teams in rural regions of Canada. Families often have difficulty accessing their services because of the lack of clinics available in Canada and the distance rural residents must travel to access one. Since its grass-roots beginning in 1995, the Lakeland Centre for FASD in north eastern Alberta has developed a community-based FASD diagnostic services model that utilizes the resources available in local communities and enhances the support to individuals and families living far away from urban centers. The article describes the history of the Lakeland Centre for FASD relative to the development of the model and diagnostic process used to diagnose children and adults. Rural adaptations to similar urban models are discussed. Critical elements to rural, in-kind services are also discussed along with ongoing challenges. Acknowledging the change in terminology over the years covered by this article, the term FASD (Fetal Alcohol Spectrum Disorder) is used throughout.