Priority topics for child and family health research in community-based paediatric health care according to caregivers and health care professionals.

Background: Patient-oriented research (POR) aligns research with stakeholders' priorities to improve health services and outcomes. Community-based health care settings offer an opportunity to engage stakeholders to determine the most important research topics to them. Our objectives were to identify unanswered questions that stakeholders had regarding any aspect of child and family health and prioritize their 'top 10' questions. Methods: We followed the James Lind Alliance (JLA) priority setting methodology in partnership with stakeholders from the Northeast Community Health Centre (NECHC; Edmonton, Canada). We partnered with stakeholders (five caregivers, five health care professionals [HCPs]) to create a steering committee. Stakeholders were surveyed in two rounds (n = 125 per survey) to gather and rank-order unanswered questions regarding child and family health. A final priority setting workshop was held to finalize the 'top 10' list. Results: Our initial survey generated 1,265 submissions from 100 caregivers and 25 HCPs. Out of scope submissions were removed and similar questions were combined to create a master list of questions (n = 389). Only unanswered questions advanced (n = 108) and were rank-ordered through a second survey by 100 caregivers and 25 HCPs. Stakeholders (n = 12) gathered for the final workshop to discuss and finalize the 'top 10' list. Priority questions included a range of topics, including mental health, screen time, COVID-19, and behaviour. Conclusion: Our stakeholders prioritized diverse questions within our 'top 10' list; questions regarding mental health were the most common. Future patient-oriented research at this site will be guided by priorities that were most important to caregivers and HCPs.

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.

Development and Evaluation of a Virtual Model for Fetal Alcohol Spectrum Disorder (FASD) Assessment and Diagnosis in Children: A Pilot Study.

The diagnostic process for fetal alcohol spectrum disorder (FASD) involves a multi-disciplinary team and includes neurodevelopmental, physical, and facial assessments and evidence of prenatal alcohol exposure during the index pregnancy. With the increased use of virtual care in health care due to the pandemic, and desire of clinics to be more efficient when providing timely services, there was a need to develop a virtual diagnostic model for FASD. This study develops a virtual model for the entire FASD assessment and diagnostic process, including individual neurodevelopmental assessments. It proposes a virtual model for assessment and diagnosis of FASD in children and evaluates the functionality of this model with other national and international FASD diagnostic teams and caregivers of children being assessed for FASD.

The Impacts of COVID-19 Restrictions on Physical Activity in Children and Youth: A Systematic Review of Qualitative Evidence.

BACKGROUND: The objectives of this systematic review were to synthesize qualitative evidence on the impacts of COVID-19 restrictions on physical activity (PA) for children and youth, and explore factors perceived to influence those impacts. METHODS: Five databases (MEDLINE, Embase, SPORTDiscus, ERIC, and CINAHL) were searched initially in June 2021 and updated in December 2021 to locate qualitative articles considering COVID-19 restrictions and PA for children and youth (≤18 y old), in any setting. Eligibility, quality assessments, and data extraction were completed by 2 independent reviewers. Data were synthesized using meta-aggregation with confidence of findings rated using ConQual. RESULTS: After screening 3505 records, 15 studies were included. Curriculum-based PA, organized sport, and active transportation were negatively impacted by COVID-19 restrictions. Negative changes were affected by COVID-19 exposure risks, inadequate instruction, poor access, screen time, and poor weather. Unstructured PA was inconsistently impacted; outdoor unstructured PA increased for some. Positive changes were facilitated by family co-participation, availability of outdoor space, and perceived mental health benefits. CONCLUSION: Qualitative data indicated restrictions had a predominantly negative impact on PA for children and youth, but inconsistent impacts on unstructured PA. The improved contextual understanding offered by our review will be foundational knowledge for health strategies moving forward.

Treatment algorithm for the use of psychopharmacological agents in individuals prenatally exposed to alcohol and/or with diagnosis of fetal alcohol spectrum disorder (FASD).

Psychotropic medication treatment of individuals who have experienced prenatal alcohol exposure (PAE) has lagged behind psychosocial interventions. Multiple psychotropic medications are often prescribed for those diagnosed with a range of neurodevelopmental disabilities and impairments of PAE (neurodevelopmental disorder associated with prenatal alcohol exposure and/or fetal alcohol spectrum disorder [ND-PAE/FASD]). Despite the diverse comorbid mental disorders, there are no specific guidelines for psychotropic medications for individuals with ND-PAE/FASD. When prescribed, concerned family members and caregivers of individuals with ND-PAE/FASD reported that polypharmacy, which was typical and adverse effects render the psychotropic medications ineffective. The objective of this work was to generate a treatment algorithm for the use of psychopharmacological agents specifically for individuals with ND-PAE/FASD. The development of decision tree for use to prescribe psychotropic medications incorporated findings from previous research and the collective clinical experience of a multidisciplinary and international panel of experts who work with individuals with ND-PAE/FASD, including an algorithm specialist. After multiple meetings and discussions, the experts reached consensus on how best to streamline prescribing along neurodevelopmental clusters. These were subdivided into four ligand-specific, receptor-acting medication targets (hyperarousal, emotional dysregulation, hyperactive/neurocognitive, and cognitive inflexibility). Each cluster is represented by a list of common symptoms. The experts recommended that prescribers first ensure adequate psychosocial and environmental, including sufficient dietary, exercise, and sleep support before prescribing psychotropic medications. Treatment then progresses through three steps of psychotropic medications for each cluster. To support established treatment goals, the most function impairing clusters are targeted first.

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.

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.