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Objective : This study aimed to describe the social determinants of health (SDoH) for patients receiving multidisciplinary team care in a Cleft Palate-Craniofacial program, develop responsive and consistent processes to include trauma-informed psychosocial histories, promote discussions about additional "non-medical" factors influencing health and surgical outcomes, and demonstrate that these activities are feasible in the context of multidisciplinary patient-provider interactions. Design : Single-site, cross-sectional study using a questionnaire. Setting : Participants were recruited from a provincial quaternary care Cleft Palate-Craniofacial program at British Columbia Children's Hospital in Vancouver, BC, Canada. Participants : 290 families completed the questionnaire. Results : 34% of families experience significant barriers to accessing primary health care, 51% struggle financially, and 11% scored four or more on the Adverse Childhood Experiences scale. Furthermore, 47% reported not having adequate social support in their lives, and 5% reported not feeling resilient at the time of the survey. Conclusion : Patients with cleft and craniofacial anomalies have complex needs that extend beyond the surgical and medical care they receive. It is critical that all Cleft and Craniofacial teams incorporate social histories into their clinic workflow and be responsive to these additional needs. Discussions surrounding SDoH and adversity are welcomed by families; being involved in the care and decision-making plans is highly valued. Healthcare providers can and should ask about SDoH and advocate for universal access to responsive, site-based, social work support for their patients. [ABSTRACT FROM AUTHOR]

Background: 22q11.2 Deletion Syndrome (22q11.2DS) can result in array of congenital abnormalities including immune dysfunction. International guidelines recommend immune evaluation of 22q11.2DS patients prior to live vaccine administration. A rotavirus vaccination program for infants aged 2 and 4 months was implemented in British Columbia (BC) in 2012. Adherence to immune workup recommendations prior to 2 months of age in patients with 22q11.2DS and adverse events following immunization is not known. Methods: A retrospective chart review of children diagnosed with 22q11.2DS in BC from January 1, 2012 to January 1, 2019 was conducted. Demographic, clinical, laboratory, immunization data and adverse reactions to vaccines were obtained. International guidelines were used as a reference for adherence to immunologic workup recommendations. Results: Forty-two children with 22q11.2DS were included. Immunization records were available for 39 children, and 22 (52.3%) received at least one dose of a live rotavirus vaccine. No adverse events following immunization were noted in clinical records. While 25 out of 27 (92.6%) of patients who received an immunological workup had a CD4 + lymphocyte count to qualify for safe administration of a live vaccination, only 12 (44%) received the Rotavirus vaccine. Of 22 infants diagnosed with 22q11.DS prior to 8 weeks of age, only ten (45.5%) received an immune workup before the rotavirus vaccine. Conclusions: The majority of our infant cohort did not receive medical care consistent with international 22q11.2DS vaccination and immunological surveillance recommendations. More effective dissemination of 22q11.2DS guidelines and improved immunological assessment for infants with 22q11.2DS in BC is necessary. [ABSTRACT FROM AUTHOR]

Background: Patients diagnosed with 22q11.2 deletion syndrome, also known as 22q11DS or DiGeorge syndrome, have a diverse array of congenital anomalies and chronic health conditions. Because no study has reported on the coordination of multidisciplinary health services in British Columbia required by individuals with 22q11DS, we set out to determine which health care services these patients access and what barriers in health informatics affect institutional and provincial data sharing. Methods: A retrospective review of patient care at BC Children's Hospital (BCCH) was conducted using the provincial discharge abstract database and databases from hospital specialty services involved in the care of patients with 22q11DS. Data were collected for patients seen at the hospital from April 2001 to March 2018. This 17-year review considered patient age at diagnosis, distribution of patient ages within the study cohort, number and type of specialty services accessed, and length of follow-up. Results: A total of 293 patients with 22q11DS were identified from the hospital discharge abstract databases (DAD) and seven BCCH specialty clinic databases. Data could not be retrieved from some clinic databases due to coding and reporting discrepancies, which prevented the amalgamation of data from all hospital specialty services. Data from the DAD and seven BC Children's Hospital specialty services were then amalgamated, and duplicates were removed to identify 293 unique patients with 22q11DS. On average, patients accessed five services, with 13 new patients being seen each year and followed for an average of 7 years. Most of the pediatric care was provided by the Cleft Palate/ Craniofacial Program, Cardiology, Endocrinology, and Otolaryngology. Using BC Women's Hospital Medical Genetics 22q11DS data (n = 400), we were able to corroborate the size of our study cohort and to estimate the prevalence of 22q11DS in BC for the study period. Conclusions: Barriers to data retrieval and sharing at institutional and provincial levels were found to limit care coordination for patients with 22q11DS, who require ongoing, complex, multidisciplinary management. Incongruent and incomplete data systems in BC are hindering our ability to provide this coordinated care and plan transition, leaving us without the evidence needed by provincial health care providers, local experts, policymakers, and national and international 22q11DS research centres. [ABSTRACT FROM AUTHOR]

Abstract: Children and adolescents with a Fetal Alcohol Spectrum Disorder (FASD) are at high-risk for developing sleep problems (SPs) triggering daytime behavioral co-morbidities such as inattention, hyperactivity, and cognitive and emotional impairments. However, symptoms of sleep deprivation are solely associated with typical daytime diagnosis, such as attention deficit hyperactivity disorder (ADHD) and treated with psychotropic medications. To understand how and why SPs are missed, we conducted qualitative interviews (QIs) with six parents and seven health care professionals (HCPs), and performed comprehensive clinical sleep assessments (CCSAs) in 27 patients together with their caregivers referred to our clinic for unresolved SPs. We used narrative schema and therapeutic emplotment in conjunction with analyzes of medical records to appropriately diagnose SPs and develop treatment strategies. The research was conducted at British Columbia Children''s Hospital in Vancouver (Canada) between 2008 and 2011. In the QIs, parents and HCPs exhibited awareness of the significance of SPs and the effects of an SP on the daytime behaviors of the child and the associated burdens on the parents. HCPs'' systemic inattention to the sequelae of SPs and the affected family''s wellbeing appears due to an insufficient understanding of the various factors that contribute to nighttime SPs and their daytime sequelae. In the CCSAs, we found that the diagnostic recognition of chronic SPs in children and adolescents was impaired by the exclusive focus on daytime presentations. Daytime behavioral and emotional problems were targets of pharmacological treatment rather than the underlying SP. Consequently, SPs were also targeted with medications, without investigating the underlying problem. Our study highlights deficits in the diagnostic recognition of chronic SPs among children with chronic neurodevelopmental disorders/disabilities and proposes a clinical practice strategy, based on therapeutic emplotment that incorporates patients and parents'' contributions in recognizing SPs and related sequelae in designing appropriate treatment and care. [Copyright &y& Elsevier]

This study aimed to describe the social determinants of health (SDoH) for patients receiving multidisciplinary team care in a Cleft Palate-Craniofacial program, develop responsive and consistent processes to include trauma-informed psychosocial histories, promote discussions about additional "non-medical" factors influencing health and surgical outcomes, and demonstrate that these activities are feasible in the context of multidisciplinary patient-provider interactions., Single-site, cross-sectional study using a questionnaire., Participants were recruited from a provincial quaternary care Cleft Palate-Craniofacial program at British Columbia Children's Hospital in Vancouver, BC, Canada., 290 families completed the questionnaire., 34% of families experience significant barriers to accessing primary health care, 51% struggle financially, and 11% scored four or more on the Adverse Childhood Experiences scale. Furthermore, 47% reported not having adequate social support in their lives, and 5% reported not feeling resilient at the time of the survey., Patients with cleft and craniofacial anomalies have complex needs that extend beyond the surgical and medical care they receive. It is critical that all Cleft and Craniofacial teams incorporate social histories into their clinic workflow and be responsive to these additional needs. Discussions surrounding SDoH and adversity are welcomed by families; being involved in the care and decision-making plans is highly valued. Healthcare providers can and should ask about SDoH and advocate for universal access to responsive, site-based, social work support for their patients.

Background: Prenatal alcohol exposure (PAE) is linked to alterations of cerebral white matter, including volume and nonspecific diffusion magnetic resonance imaging (MRI) indices of microstructure in humans. Some animal models of PAE have demonstrated myelination deficiencies, but myelin levels have not yet been evaluated in individuals with PAE. Multiecho T 2 MRI offers a quantitative method to estimate myelin water fraction (MWF; related to myelin content) noninvasively, which was used here to evaluate brain myelination in children with PAE., Methods: Participants with PAE (n = 10, 6 females, mean age 13.9 years, range 7 to 18 years) and controls (n = 14, 11 females, mean age 13.2 years, range 9 to 16 years) underwent 3T MRI of the brain. T 2 images (15 minutes acquisition for 32 echoes) were used to create MWF maps from which mean MWF was measured in 12 regions of interest (ROIs) including 8 in white matter and 4 in deep gray matter., Results: As expected, across the combined sample, MWF was highest for major white matter tracts such as the internal capsule and genu/splenium of the corpus callosum (10 to 18%) while the caudate and putamen had MWF less than 5%. Mean MWF was similar across 11/12 brain white and gray matter regions for the PAE and control groups (L/R internal capsule, major forceps, putamen, caudate nucleus, L minor forceps, genu and splenium of corpus callosum). In the PAE group, MWF was positively correlated with age in the genu of corpus callosum and right minor forceps, notably 2 frontal tracts., Conclusions: Given comparable MRI-derived myelination fraction measures in PAE relative to controls, white matter alterations shown in other imaging studies, such as diffusion tensor imaging, may reflect microstructural anomalies related to axon caliber and density., (© 2019 by the Research Society on Alcoholism.)