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Introduction: Cortical or cerebral visual impairment (CVI) is the leading cause of bilateral visual impairment in developed countries. The goals of this study were to explore the CVI education and training received by occupational therapy practitioners and teachers of students with visual impairments and to quantify the confidence of these professionals to evaluate and work with children who are diagnosed with CVI. Methods: An Internet-based survey was conducted with a volunteer sample that included occupational therapists, certified occupational therapy assistants, and certified teachers of students with visual impairments who practice in 50 U.S. states; Washington, D.C.; and Canada. The survey was posted on professional organizations and social media websites, as well as emailed to colleagues at organizations such as the Association for the Education and Rehabilitation of the Blind and Visually Impaired, schools for students who are blind, and local universities. Data collection occurred between June 2019 and November 2019. Results: Surveys were completed by 205 respondents from 43 U.S. states; Washington, D.C.; and Canada. Occupational therapy practitioners consistently reported lower rates of formal education in CVI, with only 25% of occupational therapists and 47% of certified occupational therapy assistants receiving education on CVI in their academic programs. Less than 23% of occupational therapists received training on CVI assessments, whereas 75% of teachers of students with visual impairments had training in CVI assessments. Additionally, respondents indicated reduced satisfaction with their knowledge and skills for treating or teaching children with CVI. Discussion: The results indicate a gap in formal CVI education for occupational therapy practitioners and, to a lesser extent, teachers of students with visual impairments. Due to the increasingly high prevalence of CVI, the gap in formal education on CVI is significant. Implications for Practitioners: Results indicate the need to increase formal and continuing education for occupational therapy practitioners and teachers of students with visual impairments.

This article explores the perceptions of participants following the first International Summer Institute (SI) on students as partners in higher education, a four-day professional development experience designed to foster student-staff partnerships. Approximately 9 months after the Institute, 10 participants were interviewed to understand their perceptions of student-staff partnership, and what role the SI played in supporting partnership working. We discuss the key themes that emerged from our interviews, and analyse these participant responses in comparison to responses collected during the 2016 SI. In evaluating our data, we consider the general efficacy of the SI and offer ideas for academic developers interested in supporting partnership work more generally.

While there is a wealth of research evidencing the benefits of active-learning approaches, the extent to which these teaching practices are adopted in the sciences is not well known. The aim of this study is to establish an evidential baseline of teaching practices across a bachelor of science degree program at a large research-intensive Australian university. Our purpose is to contribute to knowledge on the adoption levels of evidence-based teaching practices by faculty within a science degree program and inform our science curriculum review in practical terms. We used the Teaching Practices Inventory (TPI) to measure the use of evidence-based teaching approaches in 129 courses (units of study) across 13 departments. We compared the results with those from a Canadian institution to identify areas in need of improvement at our institution. We applied a regression analysis to the data and found that the adoption of evidence-based teaching practices differs by discipline and is higher in first-year classes at our institution. The study demonstrates that the TPI can be used in different institutional contexts and provides data that can inform practice and policy.

Children of substance abusing parents (COSAPs) are in need of supportive services but are rarely the focus of targeted interventions within a family context. This study is a pilot evaluation of the Renascent Children's Program, a family-based group program for COSAPs in Canada. Participants (N= 26) were assessed at baseline and at 1–3 month follow-up on a number of key child, parent, and family outcomes. Results demonstrated significant improvements in child well-being, parenting style, emotion regulation, and family functioning, with large effect sizes. These findings suggest that this program is an effective method of intervention for families struggling with addiction and recovery with school-age children. [ABSTRACT FROM PUBLISHER]

Stigma related to HIV in the healthcare system has a pervasive, negative impact on the mental, physical and sexual health of people living with HIV. While well-documented before the advent of antiretroviral treatment, this stigma in Canada has not been as thoroughly examined from a critical perspective since HIV's evolution from an acute to a chronic illness. The current study examines attitudes and beliefs of healthcare providers toward people living with HIV through the use of focus groups. Focus group participants were women living with HIV, men living with HIV, medical and nursing students, and health care providers working with people living with HIV. Data analysis was conducted with a critical lens using an immersion/ crystallization approach. Two broad themes emerged from the data: HIV-specific experiences, and components of stigma. Both negative and positive experiences were described. Discrimination, as a behavioural act, was deemed to be the less prevalent and often more covert expression of stigmatization. Stereotyping, including with regard to perceived sexuality, and prejudice were seen as more insidious and perpetuated by both the medical and educational establishments. These findings clearly demonstrate the need for change in terms of reducing the amount of stigma present in these complex, nuanced, and enduring relationships between people living with HIV and the health care system. [ABSTRACT FROM AUTHOR]

Background: Upstream social determinants of health (SDH) have become widely acknowledged as lying at the root of poor health outcomes in Canada and globally. The Commission on the Social Determinants of Health maintains that educating the public about the SDH is a key step towards population health equity. Little is known about adolescent perceptions of the determinants of health. Curriculum in Ontario is lacking in SDH content, placing a much greater emphasis on individual, lifestyle behaviors, such as diet, physical activity, and safe sex practices. Identifying a gap in SDH knowledge within the adolescent population is required to advocate for health curriculum revision to include SDH material. Methods: Student sociodemographic information was obtained through a self-administered questionnaire. Concept mapping exercises were used to determine students' knowledge of the determinants of health and the SDH. Knowledge was approximated by the relative number of SDH concepts present in student maps. Poisson regression analysis was used to determine correlations between sociodemographic characteristics and SDH knowledge. Results: Concept maps indicated that students attributed their health primarily to physical determinants versus social determinants; 44% of maps contained no SDH content. Statistical analyses indicated that students' SDH knowledge varied by their relative socioeconomic status (SES). Conclusions: Findings suggest that 1) there is an SDH knowledge gap in the adolescent population, and 2) an inequity in adolescent SDH knowledge exists across socio-economic factors. Current Ontario health curriculum requires revision to include SDH material, which will require greater communication and collaboration from both educational institutions and health agencies in Canada. [ABSTRACT FROM AUTHOR]

Inuit have experienced significant lifestyle changes in the past 50 years. Most recently, urbanization has resulted in greater numbers of Inuit living in urban centres in southern Canada. Little is known about Inuit parenting, and nothing has been published on Inuit parenting in an urban context. The present study sought to address this gap by describing the parenting of Inuit living in a large Canadian city and examining emergent themes for evidence of autonomy and relatedness. In partnership with the Tungasuvvingat Inuit Family Resource Centre, 39 Inuit parents completed an interview about their parenting experiences. Based on interviews, major parenting themes included: child characteristics; parenting behaviours and beliefs; affection and love; stressors; and responsive and respectful parenting. The majority of parenting themes linked to relatedness, although there was evidence of autonomy in both parenting behaviours and child characteristics. Results are interpreted in light of the autonomy-relatedness framework and theoretical implications of findings are discussed. [ABSTRACT FROM AUTHOR]

Objective: To develop a community-specific perspective of health information sources and dissemination strategies of urban Inuit to better guide health promotion efforts.Methods: Through a collaborative partnership with the Tungasuvvingat Inuit Family Resource Centre, a series of key informant interviews and focus groups were conducted to gather information on specific sources of health information, strategies of health information dissemination, and overall themes in health information processes.Findings: Distinct patterns of health information sources and dissemination strategies emerged from the data. Major themes included: the importance of visual learning, community Elders, and cultural interpreters; community cohesion; and the Inuit and non-Inuit distinction. The core sources of health information are family members and sources from within the Inuit community. The principal dissemination strategy for health information was direct communication, either through one-on-one interactions or in groups.Conclusion: This community-specific perspective of health information sources and dissemination strategies shows substantial differences from current mainstream models of health promotion and knowledge translation. Health promotion efforts need to acknowledge the distinct health information processes of this community, and should strive to integrate existing health information sources and strategies of dissemination with those of the community. [ABSTRACT FROM AUTHOR]

To describe mortality and neurodevelopmental outcome before and after the introduction of rescue therapy with natural surfactant in two neonatal units in Toronto, Canada, a retrospective cohort study of 891 liveborn 23-26 wk gestational age infants, 421 presurfactant (1982-1987) and 470 postsurfactant (1990-1994) was performed. Overall mortality was stable over time (41% vs 35%, p = 0.077), but declined for inborn 24 (71% vs 43%, p = 0.03) and 26 wk (26% vs 13%, p = 0.01) gestational age infants and was higher in surfactant-treated infants (p < 0.0001). Chronic lung disease (61% vs 34%, p < 0.0001) and bilateral blindness (8% vs 4%, p = 0.004) declined over time, with stable rates of cerebral palsy (12% vs 15%), cognitive deficit (27% vs 26%) and aided sensorineural hearing loss (5% vs 4%). Sixty-five percent of surviving infants in both eras were free from neurodevelopmental impairment, and severe impairment declined over time (p = 0.035). This study shows no secular change in overall mortality in a large cohort of 23-26 wk gestational age infants since the introduction of rescue therapy with natural surfactant. However, it does suggest that maternal transfer to and delivery of all extremely preterm infants in high risk perinatal centres is justified. [ABSTRACT FROM AUTHOR]

Chronic hepatitis B (CHB) is the leading cause of hepatocellular carcinoma (HCC) globally. We described and evaluated the outcomes of patients with CHB-HCC in Canada. In this retrospective cross-sectional cohort study, data were analysed from CHB mono-infected subjects seen between 1 January 2012 and 31 December 2022, and entered the Canadian Hepatitis B Network Registry. Descriptive analysis and chi-squared modelling were used to compare cohorts, followed by multivariable survival analysis regarding survival post-diagnosis. Statistical analyses were completed in R version 2.2. Of the 6711 patients with CHB who met inclusion criteria, 232 (3.5%) developed HCC. Compared with the CHB cohort, the majority of CHB-HCC cohort were male, SEA and HBeAg negative and born in endemic area (80% vs. 56%, 73% vs. 55%, 84% vs. 54%, 64% vs. 40% and all p < 0001). Overall, median HBV DNA level was log 2.54 (IQR: 0-4.04). Advanced liver disease, defined as minimum Fibrosis stage F3, was seen in 9.4% of overall cohort, but 92% of HCC cohort. At diagnosis, median tumour size was 2.5 cm (IQR: 1.7-4.0) and mean tumour number was 1.33 (SD: 1.33), with 81% of patients BCLC 0-A. Fifty-three per cent of patients were diagnosed with HCC as part of surveillance protocols. The survival rate after HCC diagnosis was 78.7%, during the median follow-up of 52.9 months (IQR: 17-90). In multivariable analysis, survival was significantly correlated with diagnosis through the screening programme. In this large cohort of patients with CHB-HCC, the majority of patients were detected with early-stage HCC and received treatment with curative intent, resulting in strong survival rates., (© 2024 The Author(s). Journal of Viral Hepatitis published by John Wiley & Sons Ltd.)

Variants in seven genes (LRRK2, GBA1, PRKN, SNCA, PINK1, PARK7 and VPS35) have been formally adjudicated as causal contributors to Parkinson's disease; however, individuals with Parkinson's disease are often unaware of their genetic status since clinical testing is infrequently offered. As a result, genetic information is not incorporated into clinical care, and variant-targeted precision medicine trials struggle to enrol people with Parkinson's disease. Understanding the yield of genetic testing using an established gene panel in a large, geographically diverse North American population would help patients, clinicians, clinical researchers, laboratories and insurers better understand the importance of genetics in approaching Parkinson's disease. PD GENEration is an ongoing multi-centre, observational study (NCT04057794, NCT04994015) offering genetic testing with results disclosure and genetic counselling to those in the US (including Puerto Rico), Canada and the Dominican Republic, through local clinical sites or remotely through self-enrolment. DNA samples are analysed by next-generation sequencing including deletion/duplication analysis (Fulgent Genetics) with targeted testing of seven major Parkinson's disease-related genes. Variants classified as pathogenic/likely pathogenic/risk variants are disclosed to all tested participants by either neurologists or genetic counsellors. Demographic and clinical features are collected at baseline visits. Between September 2019 and June 2023, the study enrolled 10 510 participants across >85 centres, with 8301 having received results. Participants were: 59% male; 86% White, 2% Asian, 4% Black/African American, 9% Hispanic/Latino; mean age 67.4 ± 10.8 years. Reportable genetic variants were observed in 13% of all participants, including 18% of participants with one or more 'high risk factors' for a genetic aetiology: early onset (<50 years), high-risk ancestry (Ashkenazi Jewish/Basque/North African Berber), an affected first-degree relative; and, importantly, in 9.1% of people with none of these risk factors. Reportable variants in GBA1 were identified in 7.7% of all participants; 2.4% in LRRK2; 2.1% in PRKN; 0.1% in SNCA; and 0.2% in PINK1, PARK7 or VPS35 combined. Variants in more than one of the seven genes were identified in 0.4% of participants. Approximately 13% of study participants had a reportable genetic variant, with a 9% yield in people with no high-risk factors. This supports the promotion of universal access to genetic testing for Parkinson's disease, as well as therapeutic trials for GBA1 and LRRK2-related Parkinson's disease., (© The Author(s) 2024. Published by Oxford University Press on behalf of the Guarantors of Brain.)

Objective: To describe the incidence, trends, management's variability and short-term outcomes of preterm infants with severe post-hemorrhagic ventricular dilatation (sPHVD)., Methods: We reviewed infants &lt;33 weeks' gestation who had PHVD and were admitted to the Canadian Neonatal Network between 2010 and 2018. We compared perinatal characteristics and short-term outcomes between those with sPHVD and those with mild/moderate PHVD and those with and without ventriculo-peritoneal (VP) shunt., Results: Of 29,417 infants, 2439 (8%) had PHVD; rate increased from 7.3% in 2010 to 9.6% in 2018 (P = 0.005). Among infants with PHVD, sPHVD (19%) and VP shunt (29%) rates varied significantly across Canadian centers and between geographic regions (P &lt; 0.01 and P = 0.0002). On multivariable analysis, sPHVD was associated with greater mortality, seizures and meningitis compared to mild/moderate PHVD., Conclusions: Significant variability in sPHVD and VP shunt rates exists between centers and regions in Canada. sPHVD was associated with increased mortality and morbidities., (© 2022. The Author(s), under exclusive licence to Springer Nature America, Inc.)

The aim of this retrospective cohort study was to study the clinical burden associated with cardio-pulmonary critical decompensations (CPCDs) in preterm neonates and factors associated with mortality. Through the Canadian Neonatal Network (30 tertiary NICUs, 2010-2017), we identified infants < 32-week gestational age with CPCDs, defined by "significant exposure" to cardiotropes and/or inhaled nitric oxide (iNO): (1) either therapy for ≥ 3 consecutive days, (2) both for ≥ 2 consecutive days, or (3) any exposure within 2 days of death. Early CPCDs (≤ 3 days of age) and late CPCDs (> 3 days) were examined separately. Outcomes included CPCD-incidence, mortality, and inter-site variability using standardized ratios (observed/adjusted expected rate) and network funnel plots. Mixed-effects analysis was used to quantify unit-level variability in mortality. Overall, 10% of admissions experienced CPCDs (n = 2915). Late CPCDs decreased by ~ 5%/year, while early CPCDs were unchanged during the study period. Incidence and CPCD-associated mortality varied between sites, for both early (0.6-7.5% and 0-100%, respectively) and late CPCDs (2.5-15% and 14-83%, respectively), all p < 0.01. Units' late-CPCD incidence and mortality demonstrated an inverse relationship (slope =  -2.5, p < 0.01). Mixed-effects analysis demonstrated clustering effect, with 6.4% and 8.6% of variability in mortality after early and late CPCDs respectively being site-related, unexplained by available patient-level characteristics or unit volume. Mortality was higher with combined exposure than with only-cardiotropes or only-iNO (41.3%, 24.8%, 21.5%, respectively; p < 0.01)., Conclusions: Clustering effects exist in CPCD-associated mortality among Canadian NICUs, with higher incidence units showing lower mortality. These data may aid network-level benchmarking, patient-level risk stratification, parental counseling, and further research and quality improvement work., What Is Known: • Preterm neonates remain at high risk of acute and chronic complications; the most critically unwell require therapies such as cardiotropic drugs and inhaled nitric oxide. • Infants requiring these therapies are known to be at high risk for adverse neonatal outcomes and for mortality., What Is New: • This study helps illuminate the national burden of acute cardio-pulmonary critical decompensation (CPCD), defined as the need for cardiotropic drugs or inhaled nitric oxide, and highlights the high risk of morbidity and mortality associated with this disease state. • Significant nationwide variability exists in both CPCD incidence and associated mortality; a clustering effect was observed with higher incidence sites showing lower CPCD-associated mortality., (© 2022. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

White-nose syndrome (WNS) is a disease among hibernating North American bats caused by the psychrophilic fungus Pseudogymnoascus destructans. Since its discovery in New York state, US, in 2006, and as of 2020, WNS has rapidly spread to 34 American states and seven Canadian provinces, causing precipitous declines of native bat populations across North America. The rapid spread of this fungal pathogen has been facilitated by the social behavior of bats, as well as the ability of subterranean hibernacula to support a favorable environment for P. destructans, and is probably exacerbated by anthropogenic transmission events. Although many bat species roost in natural cave environments, bats also selectively use diverse structures for hibernacula. Certain areas of the US lack caves, forcing bats to select different winter roosting environments. Bats have been observed using roadway-associated structures, such as bridges and culverts, for roosting, especially in regions that lack natural cave environments. However, the potential for P. destructans transmission in such roadway-associated structures requires further investigation. Understanding potential pathogen transmission in these widely used anthropogenic structures is crucial to disease management and preventing further declines of imperiled bat populations. Our study investigated these structures as potential pathogen transmission corridors by surveying the use of these structures by Perimyotis subflavus and other susceptible bat populations and by measuring their temperature. The results suggest the environments of roadway-associated culverts are thermally conducive to the proliferation of P. destructans-even in regions with mild winters-and the development of WNS in susceptible bat populations. It is apparent these roadway-associated structures have the potential to spread P. destructans and exacerbate the effect of WNS on susceptible bat populations., (© Wildlife Disease Association 2022.)

Objective: To examine whether the family integrated care (FICare) programme, a multifaceted approach which enables parents to be engaged as primary caregivers in the neonatal intensive care unit, impacts infant neurodevelopment and growth at 18 months' corrected age., Design/methods: Prospective cohort study of infants born <29 weeks' gestational age (GA) who participated in the FICare cluster randomised control trial (cRCT) and were assessed in the Canadian Neonatal Follow-Up Network (CNFUN). The primary outcome measure, Cognitive or Language composite score <85 on the Bayley-III, was compared between FICare exposed and routine care children using logistic regression, adjusted for potential confounders and employing generalised estimation equations to account for clustering of infants within sites., Results: Of 756 infants <29 weeks' GA in the FICare cRCT, 505 were enrolled in CNFUN and 455 were assessed (238 FICare, 217 control). Compared with controls, FICare infants had significantly higher incidence of intraventricular haemorrhage (IVH) (19.5% vs 11.7%, p=0.024) and higher proportion of employed mothers (76.6% vs 73.6%, p=0.043). There was no significant difference in the odds of the primary outcome (adjusted OR: 0.92 (0.59 to 1.42) FiCare vs Control) on multivariable analyses adjusted for GA, IVH and maternal employment. However, Bayley-III Motor scores (adjusted difference in mean (95% CI) 3.87 (1.22 to 6.53) and body mass index 0.67 (0.36 to 0.99) were higher in the FICare group., Conclusions: Very preterm infants exposed to FICare had no significant difference in incidence of cognitive or language delay but had better motor development., Trial Registration Number: Participants in this cohort study were previously enrolled in a registered trial: NCT01852695., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

Chronic pelvic pain affects women across all demographics. Its management is complex and requires a multimodal approach. Cannabis has been legal for medical purposes for many years; however, its pharmacokinetics are just beginning to be understood, as are its analgesic effects and other benefits, such as improved sleep quality and reduced nausea and vomiting. Given the recent Canada-wide legalization of cannabis for non-medical use, patients may be more willing to disclose cannabis use and use it for pain management. Given the complexity of chronic pain management, physicians must be open to cannabis as an analgesic option. Cannabis use may decrease the need for opioids, a phenomenon that could reduce opioid dependency. Now is the ideal time to study patients' use of and perspectives on cannabis for pain relief in order to establish its effectiveness and safety. Cannabis shows potential to be a key player in a multimodal approach to chronic pelvic pain., (Copyright © 2020 The Society of Obstetricians and Gynaecologists of Canada/La Société des obstétriciens et gynécologues du Canada. Published by Elsevier Inc. All rights reserved.)

Into the Light, a recently mounted collectively curated museum exhibition, exposed and countered histories and legacies of 20th-century "race betterment" pedagogies taught in Ontario's postsecondary institutions that targeted some groups of people, including Anishinaabe, Black, and other racialized populations, and disabled and poor people, with dehumanizing ideas and practices. This article advances understandings of the transformative potential of centralizing marginalized stories in accessible and creative ways to disrupt, counter, and draw critical attention to the brutal impacts of oppressive knowledge. The "counter-exhibition" prioritized stories of groups unevenly targeted by such oppression to contest and defy singular narratives circulating in institutional knowledge systems of what it means to be human. The authors draw on feminist, decolonial and disability scholarship to analyze the exhibition's curation for the ways it collectively and creatively: (1) brought the past to the present through materializing history and memory in ways that challenged archival silences; and (2) engaged community collaboration using accessible, multisensory, multimedia storytelling to "speak the hard truths of colonialism" (Lonetree) while constructing a new methodology for curating disability and access (Cachia). The authors show how the exhibition used several elements, including counter-stories, to end legacies of colonial eugenic violence and to proliferate accounts that build solidarity across differences implicated in and impacted by uneven power (Gaztambide-Fernández)., (© 2021 Wiley Periodicals LLC.)

Background Previous studies regarding survival in patients with splanchnic vein thrombosis (SVT) are limited. This study measured overall survival in a large cohort of SVTs through linkage to population-based data. Methods and Results Using a previously derived text-search algorithm, we screened the reports of all abdominal ultrasound and contrast-enhanced computed tomography studies at The Ottawa Hospital over 14 years. Screen-positive reports were manually reviewed by at least 2 authors to identify definite SVT cases by consensus. Images of uncertain studies were independently reviewed by 2 radiologists. One thousand five hundred sixty-one adults with SVT (annual incidence ranging from 2.8 to 5.9 cases/10 000 patients) were linked with population-based data sets to measure the presence of concomitant cancer and survival status. Thrombosis involved multiple veins in 314 patients (20.1%), most commonly the portal vein (n=1410, 90.3%). Compared with an age-sex-year matched population, patients with SVT had significantly reduced survival in particular with local cancer (adjusted relative excess risk for recent cases 12.0 [95% CI, 9.8-14.6] and for remote cases 9.7 [7.7-12.2]), distant cancer (relative excess risk for recent cases 5.7 [4.5-7.3] and for remote cases 5.4 [4.4-6.6]), cirrhosis (relative excess risk 8.2 [5.3-12.7]), and previous venous thromboembolism (relative excess risk 3.8 [2.4-6.0]). One hundred fifty (23.9%) of patients >65 years of age were anticoagulated within 1 month of diagnosis. Conclusions SVT is more common than expected. Most patients have cancer and the portal vein is by far the most common vein involved. Compared with the general population, patients with SVT had significantly reduced survival, particularly in patients with concomitant cancer, cirrhosis, and previous venous thromboembolic disease. Most elderly patients did not receive anticoagulant therapy.

The evidence base supporting genetic and genomic sequence-variant interpretations is continuously evolving. An inherent consequence is that a variant's clinical significance might be reinterpreted over time as new evidence emerges regarding its pathogenicity or lack thereof. This raises ethical, legal, and financial issues as to whether there is a responsibility to recontact research participants to provide updates on reinterpretations of variants after the initial analysis. There has been discussion concerning the extent of this obligation in the context of both research and clinical care. Although clinical recommendations have begun to emerge, guidance is lacking on the responsibilities of researchers to inform participants of reinterpreted results. To respond, an American Society of Human Genetics (ASHG) workgroup developed this position statement, which was approved by the ASHG Board in November 2018. The workgroup included representatives from the National Society of Genetic Counselors, the Canadian College of Medical Genetics, and the Canadian Association of Genetic Counsellors. The final statement includes twelve position statements that were endorsed or supported by the following organizations: Genetic Alliance, European Society of Human Genetics, Canadian Association of Genetic Counsellors, American Association of Anthropological Genetics, Executive Committee of the American Association of Physical Anthropologists, Canadian College of Medical Genetics, Human Genetics Society of Australasia, and National Society of Genetic Counselors., (Copyright © 2019 American Society of Human Genetics. All rights reserved.)

Increased usage of exome and genome sequencing has made uncertainties associated with genomic sequencing methods more prevalent within medicine. Current research focuses on patients' perceptions of uncertainty related to genomic sequencing, but there is limited knowledge of the perspectives of providers. The aim of this study was to explore how professionals in genomics perceive uncertainties involved in genomic sequencing, and if or how this impacts their approach to pretest counseling. We performed 20 semi-structured interviews with genetic counselors in the United States and Canada who provide pretest genetic counseling for genomic sequencing. Interviews explored participating genetic counselors' views of uncertainty regarding genomic sequencing, how they classify it, how it manifests, and how they manage it during pretest counseling. Thematic analysis showed that genetic counselors acknowledge concepts of uncertainty that map to existing frameworks of uncertainty for genomic sequencing. Genetic counselors also perceived incongruencies between patients' and providers' expectations of genomic sequencing, which prompted them to modify patients' perceptions of uncertainty related to genomic sequencing. All genetic counselors agreed that guidance and strategies for genomic sequencing pretest counseling would be helpful, particularly for novice genetic counselors and non-genetics providers. These findings highlight the need and potential for conceptual models of uncertainty and uncertainty management strategies to facilitate patient-centered pretest counseling for genomic sequencing., (© 2019 National Society of Genetic Counselors.)

Objective: To characterize clinical outcomes of infants born after previable rupture of membranes (pROM, < 23 weeks gestation and latency period ≥ 2 weeks) in relation to refractory hypoxic respiratory failure (rHRF)., Study Design: pROM neonates categorized as rHRF (FiO 2  > 0.6 for ≥ 2 h) and treated (high frequency ventilation + inhaled nitric oxide) were compared with no rHRF group. Primary outcome was survival until discharge. Factors associated with rHRF and mortality were identified., Result: Overall, mortality and disability rates were 28% and 22%, respectively. Treated rHRF group (n = 32) had longer period of ROM, mortality was (31% vs. 14%; p = 0.20), with similar survival-without-disability (54% vs. 47%; p = 0.67). Higher gestational age at birth [1.57 (1.03,2.39)] and cesarean delivery [12.6 (1.22,125)] were associated with increased survival., Conclusion: Birth after pROM is associated with high rates of adverse outcomes, independent of latency period. Following treatment, rHRF infants may have similar long-term outcomes as those without rHRF.

The genetic counseling profession is continuing to develop globally, with countries in various stages of development. In some, the profession has been in existence for decades and is increasingly recognized as an important provider of allied health, while in others it is just beginning. In this article, we describe the current global landscape of the genetic counseling specialty field's professional development. Using examples of the United States, United Kingdom, Canada, Australia, South Africa, and various countries in Asia, we highlight the following: (a) status of genetic counseling training programs, (b) availability of credentialing through government and professional bodies (certification, registration, and licensure), and potential for international reciprocity, (c) scope of clinical practice, and (d) health-care system disparities and cultural differences impacting on practice. The successful global implementation of precision medicine will require both an increased awareness of the importance of the profession of "genetic counselor" and flexibility in how genetic counselors are incorporated into each country's health-care market. In turn, this will require more collaboration within and across nations, along with continuing engagement of existing genetic counseling professional societies., (© 2018 The Authors. American Journal of Medical Genetics Part C: Seminars in Medical Genetics Published by Wiley Periodicals, Inc.)

Objective: To identify core thoracic surgery procedures that require increased emphasis during thoracic surgery residency for residents to achieve operative independence and to compare the perspectives of residents and program directors in this regard., Methods: A modified Delphi process was used to create a survey that was distributed electronically to all Canadian thoracic surgery residents (12) and program directors (8) addressing the residents' ability to perform 19 core thoracic surgery procedures independently after the completion of residency. Residents were also questioned about the adequacy of their operative exposure to these 19 procedures during their residency training. A descriptive summary including calculations of frequencies and proportions was conducted. The perceptions of the 2 groups were then compared using the Fisher exact test employing a Bonferroni correction. The relationship between residents' operative exposure and their perceived operative ability was explored in the same fashion., Results: The response rate was 100% for residents and program directors. No statistical differences were found between residents' and program directors' perceptions of residents' ability to perform the 19 core procedures independently. Both groups identified lung transplantation, first rib resection, and extrapleural pneumonectomy as procedures for which residents were not adequately prepared to perform independently. Residents' subjective ratings of operative exposure were in good agreement with their reported operative ability for 13 of 19 procedures., Conclusion: This study provides new insight into the perceptions of thoracic surgery residents and their program directors regarding operative ability. This study points to good agreement between residents and program directors regarding residents' surgical capabilities. This study provides information regarding potential weaknesses in thoracic surgery training, which may warrant an examination of the curricula of existing programs as well as a reconsideration of what the scope of practice of a general thoracic surgeon should entail., (© 2013 Published by Association of Program Directors in Surgery on behalf of Association of Program Directors in Surgery.)

Objective: To determine the current survival rate of singleton living newborns born at gestational age of 24 and 25 weeks, using obstetric factors available to the physician before birth., Design: Retrospective study of all live births in 13 of 17 Canadian tertiary centres. Population All singleton live births without congenital abnormalities., Methods: During the years 1991-1996, data were abstracted from clinical databases and charts of 860 live births, in 13 of the 17 tertiary centres in Canada, all with major neonatal intensive care units. Newborn survival was defined as alive at discharge from neonatal intensive care unit. Abstracted elements included gestational age, maternal antenatal corticosteroid treatment, birthweight, gender, fetal presentation and mode of delivery., Results: Average survival rates increased from 56.1% at 24 weeks (n = 406) to 68.0% at 25 weeks (n = 454). Survival rates ranged from 53.1% at day 168 to 81.6% at day 181 (r = 0.802, P < 0.05). Steroid administration improved the survival rates at 24 and 25 weeks compared with that of unexposed fetuses, respectively (58.9% vs 41.8%; OR 1.70; 95% CI 1.03-2.08 and 74.2% vs 56.8%; OR 2.19; 95% CI 1.41-3.38). Caesarean delivery for breech presentation improved survival compared with vaginal delivery, both at 24 and 25 weeks (56.1% vs 36.0%; OR 2.19; 95% CI 1.10-4.34, and 68.7% vs 55.2% OR 1.78; 95% CI 0.093-3.43). Female neonates displayed better survival rates (59.6% vs 52.1% OR 1.36; 95% CI 0.92-2.01, and 72.6% vs 63.1% OR 1.51; 95% CI 1.02-2.25) at 24 and 25 weeks, respectively. Explanatory regression model confirmed these factors as prognostic variables associated with survival., Conclusions: This extensive collaborative study confirms that several prognostic factors, known before birth, including gestational age in days, steroid treatment, mode of presentation and fetal sex may help obstetricians, neonatologists and parents in their decision-making process at 24 and 25 weeks of pregnancy.

Objectives: To prospectively determine the rate of cytomegalovirus shedding in children and the rate of seroconversion to cytomegalovirus in providers at 38 infant-toddler day care centers in Toronto, Canada., Methods: Urine was collected for shell vial assay in 471 children between the ages of 3 and 42 months. Providers (n = 206) were tested for the presence of cytomegalovirus antibody by latex agglutination. Of the 68 providers who were seronegative, 56 were retested approximately 1 year later., Results: Viruria was documented in 79 (17%) children and antibody in 67% of providers. Seropositivity was significantly related to country of birth outside Canada, presence of children at home < 5 years of age and increased household size. Seroconversion was documented in 12.5% (n = 7). Of these providers 71% worked at centers where workers never wore gloves for diaper changing vs. 33% of those who did not seroconvert (P = 0.06), and all were younger than 30 years vs. 59% of those who did not seroconvert (P = 0.04). In centers with viruria the association of seroconversion with lack of glove use was enhanced (P = 0.04). Seroconversion was marginally more likely in providers working with infants only than with infants and toddlers or with toddlers alone. Logistic regression confirmed that seroprevalence was more likely in providers who were born outside Canada, had children younger than age 5 years in the household and with an increased number of people in the household. Seroconversion was more likely if the provider worked at centers not using gloves for diaper changes, worked with infants only rather than with toddlers and infants and was < 30 years old, with each factor contributing independently to the model., Conclusions: Cytomegalovirus infection is common in children and providers in Toronto day-care centers.