Prenatal Exposures, Diagnostic Outcomes, and Life Experiences of Children and Youths with Fetal Alcohol Spectrum Disorder.

Children and youths diagnosed with FASD may experience a range of adverse health and social outcomes. This cross-sectional study investigated the characteristics and outcomes of children and youths diagnosed with FASD between 2015 and 2018 at the Sunny Hill Centre in British Columbia, Canada and examined the relationships between prenatal substance exposures, FASD diagnostic categories, and adverse health and social outcomes. Patient chart data were obtained for 1187 children and youths diagnosed with FASD and analyzed. The patients (mean age: 9.7 years; range: 2-19) had up to 6 physical and 11 mental health disorders. Prenatal exposure to other substances (in addition to alcohol) significantly increased the severity of FASD diagnosis (OR: 1.18): the odds of FASD with sentinel facial features (SFF) were 41% higher with prenatal cigarette/nicotine/tobacco exposure; 75% higher with exposure to cocaine/crack; and two times higher with exposure to opioids. Maternal mental health issues and poor nutrition also increase the severity of FASD diagnosis (60% and 6%, respectively). Prenatal exposure to other substances in addition to alcohol significantly predicts involvement in the child welfare system (OR: 1.52) and current substance use when adjusted for age (aOR: 1.51). Diagnosis of FASD with SFF is associated with an increased number of physical (R2 = 0.071, F (3,1183) = 30.51, p = 0.000) and mental health comorbidities (R2 = 0.023, F (3,1185) = 9.51, p = 0.000) as compared to FASD without SFF adjusted for age and the number of prenatal substances. Screening of pregnant women for alcohol and other substance use, mental health status, and nutrition is extremely important.

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.

Why do women consume alcohol during pregnancy or while breastfeeding?

ISSUE: Alcohol consumption during pregnancy and breastfeeding cause adverse health outcomes to the mother and child, including Fetal Alcohol Spectrum Disorder (FASD). APPROACH: Systematic literature review and thematic synthesis. Original studies that contained reasons for alcohol consumption in pregnancy and while breastfeeding were included. The Mixed Methods Appraisal Tool (MMAT) and the Confidence in the Evidence of Reviews of Qualitative Research (CerQUAL) approach were utilised. The review protocol is available on PROSPERO (registration number: CRD42018116998). KEY FINDINGS: Forty-two eligible studies comprising women from 16 countries were included. Most commonly reported reasons of alcohol use in pregnancy were societal pressure and the belief that only "strong" alcohol and alcohol in large quantities is harmful. Other reasons were: a lack of awareness of adverse effects on the fetus; coping with adverse life experiences; consumption based on intuitive decision-making and influenced by personal/peer experiences; belief in the beneficial properties of alcohol; advice from medical practitioners; unwanted or unplanned pregnancy; alcohol dependence; and consumption as a cultural/traditional custom. Reasons for alcohol use during breastfeeding included the belief that alcohol stimulates breast milk production, unclear advice from medical practitioners, unawareness of the risks of infant exposure and to improve mood and celebrate events. IMPLICATIONS: Understanding the context of reasons for alcohol use in pregnancy is crucial for implementing prenatal health education, and preventing FASD and other adverse maternal and child health outcomes. CONCLUSION: Individual beliefs, knowledge/advice, culture and personal circumstances influence alcohol use in pregnancy. Data are limited for reasons surrounding alcohol use while breastfeeding.

Health, social and legal outcomes of individuals with diagnosed or at risk for fetal alcohol spectrum disorder: Canadian example.

BACKGROUND: Fetal Alcohol Spectrum Disorder (FASD) is a leading cause of lifelong developmental and physical disabilities and behavioural problems. This study describes the characteristics of individuals diagnosed with or at risk for FASD in British Columbia, Canada. METHODS: A retrospective chart review and cross-sectional analysis were conducted on records of individuals diagnosed or at risk for FASD at the Asante Centre from January 2015 to July 2019. Descriptive statistics results were stratified by age, sex, and involvement with the criminal justice and child welfare systems. Logistic regression was used to investigate potential associations. RESULTS: 161 individuals with diagnosed or at risk for FASD, (53 % male; mean age = 15.7 years, SD = 9.1) were included in the analysis. High levels of psychological/developmental disabilities (78 %), physical comorbidities (38 %), substance use (50 %), and involvement in child welfare (75 %) and criminal justice systems (30 %) were found across the entire group. Individuals over 20 reported the greatest proportion of any past substance (60.9 %), alcohol use (39.1 %) and stimulant use (30.4 %), compared to individuals aged 10-19 (41.3 %; 12.0 %; 14.1 %, respectively). Involvement with the child welfare system was associated with higher chances of having anxiety (OR 4.1; 95 % CI: 1.25-15.00). Involvement with the criminal justice system was associated with higher rates of past substance and cannabis use. CONCLUSION: Individuals with FASD demonstrate a significant need for access to mental health and addiction services, especially among those with involvement in the child welfare and criminal justice systems. These findings point to the importance of improving policies to support the unique needs of individuals with FASD.

Maternal alcohol use, adverse neonatal outcomes and pregnancy complications in British Columbia, Canada: a population-based study.

BACKGROUND: The current study aimed to estimate the prevalence of alcohol use identified as a risk factor during pregnancies by the antenatal care providers, resulting in live births in British Columbia (BC) and to examine associations between alcohol use, adverse neonatal outcomes, and pregnancy complications. METHODS: This population-based cross-sectional study utilized linked obstetrical and neonatal records within the BC Perinatal Data Registry (BCPDR), for deliveries that were discharged between January 1, 2015 and March 31, 2018. The main outcome measures were alcohol use identified as a risk factor during pregnancy, associated maternal characteristics, pregnancy complications, and adverse neonatal outcomes. Estimates for the period and fiscal year prevalence were calculated. Chi-square tests were used to compare adverse neonatal outcomes and pregnancy complications by alcohol use during pregnancy identified as a risk factor. Logistic regression was used to examine the association between alcohol use identified as a risk factor during pregnancy and adverse neonatal outcomes and pregnancy complications, after adjusting for identified risk factors. RESULTS: A total of 144,779 linked records within the BCPDR were examined. The period prevalence of alcohol use during pregnancy identified as a risk factor was estimated to be 1.1% and yearly prevalence was 1.1, 1.1, 1.3 and 0.9% from the 2014/2015 to 2017/2018 fiscal years, respectively. Alcohol use identified as a risk factor was associated with younger maternal age, fewer antenatal visits, being primiparous, a history of mental illness, substance use and smoking. Neonates with alcohol use during pregnancy identified as a risk factor had greater odds of being diagnosed with: "low birth weight (1000-2499g)" (ICD-10: P07.1; aOR = 1.25; 95% CI: 1.01, 1.53), "other respiration distress of newborn" (ICD-10: P22.8; aOR = 2.57; 95% CI: 1.52, 4.07), "neonatal difficulty in breastfeeding" (ICD-10: P92.5; aOR = 1.97; 95% CI: 1.27, 2.92) and "feeding problems, unspecified" (ICD-10: P92.9; aOR = 2.06; 95% CI: 1.31, 3.09). CONCLUSIONS: The prevalence of alcohol use during pregnancy identified as a risk factor was comparable to previous estimates within the BCPDR. Identified prenatal alcohol exposure was associated with notable differences in maternal and neonatal characteristics and adverse neonatal outcomes. More consistent, thorough screening and prevention efforts targeting alcohol use in pregnancy are urgently needed in Canada.

Profile of Mothers of Children with Fetal Alcohol Spectrum Disorder: A Population-Based Study in Canada.

OBJECTIVE: To compare the characteristics of mothers of children with Fetal Alcohol Spectrum Disorder (FASD) with mothers of typically developing control children. METHODS: The study utilized a cross-sectional, observational design, using active case ascertainment. Biological mothers were interviewed using a standardized retrospective questionnaire to collect data on demographics, living environment, pregnancy history, nutrition, alcohol and other drug use prior to and following pregnancy recognition. RESULTS: A total of 173 mothers were interviewed. Of these, 19 had a child who was diagnosed with FASD, five had a child who had received a deferred FASD diagnosis, and 37 had children who were selected into the control group as typically developing children. The remaining 112 mothers had children who did not meet diagnostic criteria for FASD. The mothers of children with FASD did not differ significantly from mothers of the control group children with respect to age, ethnicity, marital status, and employment status at the time of pregnancy. However, mothers of children with FASD had lower levels of education (p < 0.01) and were more likely to have received financial support (p < 0.05) at the time of pregnancy, to have smoked tobacco (p < 0.001), and to have used marijuana or hashish (p < 0.01) prior to pregnancy recognition, compared with mothers of control children. All mothers of children with FASD reported alcohol consumption prior to pregnancy recognition; however, only 10.5% reported alcohol consumption following pregnancy recognition. None of the mothers interviewed reported any drug use following pregnancy recognition. CONCLUSIONS: Population-based preventive interventions, including repeated screening, monitoring, and education regarding the effects of alcohol use, as well as other substances, before and during pregnancy, are needed to eliminate risk for FASD and other negative consequences on child and maternal health.

Difficulties in Daily Living Experienced by Adolescents, Transition-Aged Youth, and Adults With Fetal Alcohol Spectrum Disorder.

BACKGROUND: Individuals with fetal alcohol spectrum disorder (FASD) experience a range of problems in their cognitive, affective, and physical functioning following prenatal alcohol exposure (PAE), in addition to multiple complex difficulties in daily living that impact well-being. Using the Canadian National FASD Database, we sought to profile a range of difficulties in daily living, along with risk factors, in a large cross-sectional cohort of adolescents, transition-aged youth, and adults with PAE, of which a subset was ultimately diagnosed with FASD. METHODS: We summarized data for 9 current difficulties in daily living reported at the time of diagnostic assessment for 726 individuals with PAE assessed at 26 FASD diagnostic clinics across Canada, including 443 adolescents (12 to 17 years), 135 transition-aged youth (18 to 24 years), and 148 adults (25 to 60 years). Difficulties included problems related to school disruption, employment, independent living needs, supportive or sheltered housing, legal problems with victimization, legal problems with offending, incarceration, alcohol misuse, and other substance misuse. Risk factors included age, gender, living placement, postnatal trauma, and neurodevelopmental impairment. RESULTS: Across the full PAE sample, adolescents, transition-aged youth, and adults presented with high rates of difficulties in daily living, including independent living support needs (63%), alcohol misuse (38%), other substance misuse (46%), employment problems (37%), legal problems with offending (30%), assisted or sheltered housing (21%), school disruption (18%), legal problems with victimization (4%), and incarceration (3%). Difficulty rates were similar for those with FASD irrespective of diagnosis (e.g., with or without sentinel facial features), but rates greater for adults, and those with low overall intellectual functioning (IQ < 70). Controlling for age and IQ, cumulative difficulty was independently associated with gender, living placement, and neurodevelopmental impairment. CONCLUSIONS: Adolescents, transition-aged youth, and adults with FASD experienced a range of substantial and complex difficulties at the time of their diagnostic assessment, signaling a high level of service needs. These findings underscore the importance of developmentally informed assessment continued through childhood, as well as ongoing functional and needs-based service provision as youth with FASD transition to adulthood and beyond.

Mental Health and Affect Regulation Impairment in Fetal Alcohol Spectrum Disorder (FASD): Results from the Canadian National FASD Database.

AIMS: Individuals with fetal alcohol spectrum disorder (FASD) frequently have challenges with regulating emotional arousal, or affect regulation (AR), and experience high rates of mental health disorders. This study examined children and adults with FASD to investigate the relationship between AR impairment and several mental health problems and diagnoses. METHODS: Data from the Canadian national FASD database was used for analysis. Seven mental health diagnoses, including attention-deficit/hyperactivity disorder, post-traumatic stress disorder, conduct disorder, attachment disorder, intellectual disability, and language disorder were examined. A history of suicidality was also examined. The prevalence of these mental health problems in individuals with and without AR impairment was compared. RESULTS: Individuals with FASD and AR impairment were significantly more likely to be diagnosed with conduct disorder (OR 4.8), attachment disorder (OR 6.1), or post-traumatic stress disorder (OR 8.1) when compared to those without AR impairment. They were also more likely to have a history of suicidality (OR 8.6). AR impairment was most commonly found in those with greater overall neurodevelopmental impairment. Having AR impairment was associated with receiving a diagnosis of FASD at a later age, but was not related to gender, intellectual disability, or language disorder. CONCLUSION: AR impairment is strongly related to several mental health diagnoses in those with FASD and presents some promising possibilities for targeted early intervention.

Adults with Fetal Alcohol Spectrum Disorder: Factors Associated with Positive Outcomes and Contact with the Criminal Justice System.

BACKGROUND: Adults with FASD are at increased risk for contact with the criminal justice system (CJS). To date, there has been limited research devoted to development of supports for adults with FASD and it is unclear what supports are required to improve outcomes and reduce CJS contact. OBJECTIVES: To examine the services and supports experienced by a small group of adults with FASD living in both rural and urban locations in Ontario, and their contact with the CJS. METHODS: A sample of 14 individuals with FASD and 11 support persons participated in the study. Semi-structured interviews were conducted and coded according to key themes which were qualitatively analysed using quotations that supported each key theme. A reliability analysis was conducted for the interview coding. RESULTS: Early diagnosis and lower substance use were found to be factors associated with reduced contact with the CJS. Participants reported on: knowledge of their diagnosis and caregiver training and education about FASD; interdependence; routine, structure, and supervision; evidence of a strength-based approach; effective communication; and collaborative services. Few participants had received training and education around FASD and further research is needed to determine the training required for more successful interventions and outcomes. CONCLUSION: As has been found previously, early diagnosis of FASD is associated with more positive outcomes including reduced amount of contact with the CJS. It is likely that early diagnosis leads to the receipt of more supports throughout childhood and contributes to a better understanding of FASD by family and caregivers.

Diagnosing FASD in adults: the development and operation of an adult FASD clinic in Ontario, Canada.

This paper describes the development and operation of an interdisciplinary Fetal Alcohol Spectrum Disorders (FASD) diagnostic clinic focussing specifically on adults. The clinic is embedded within a community-based interdisciplinary health agency specializing in intellectual and developmental disabilities. A review of the clinic's assessment process is presented describing the steps from intake to feedback and intervention. To date, the clinic has received 93 referrals and given 41 alcohol-related diagnoses including 10 completed using videoconferencing technology. Issues unique to adult diagnosis are discussed as well as some of the challenges, including high rates of cancellations/no-shows for appointments, obtaining background and historical information, establishing maternal alcohol history, working collaboratively with other support sectors such as children's protective services and the justice system, and finding appropriate follow-up and intervention services in the community. Recommendations for future work to support adults with FASD and their families are presented.

A comparison of the behavioural and emotional characteristics of Alzheimer's dementia in individuals with and without Down syndrome.

The behavioural and emotional changes associated with Alzheimer's disease (AD) are compared for individuals with Down syndrome and AD and individuals with AD from the general population (AD-only). The primary caregivers of 30 people with Down syndrome and AD and 30 people with AD-only completed the BEHAVE-AD and the Apathy subscale of the CERAD. As well, behavioural observations at adult day programs were undertaken with selected participants (n = 26). The Down syndrome group experienced fewer delusions and had lower total scores on the BEHAVE-AD, indicating fewer problem behaviours overall. Day program observations suggested that the AD-only group were more likely to be sedentary and observe the activities of others, while the Down syndrome group were more physically active. Improving our understanding of the similarities and differences between these two groups may help facilitate the integration of individuals with Down syndrome into adult day programs for the general population.