Agricultural Research Institute of Ontario

The Canadian Society for Exercise Physiology (CSEP), in cooperation with ParticipACTION and other stakeholders, and with support from the Public Health Agency of Canada (PHAC), has developed the new Canadian Physical Activity Guidelines for Children (aged 5-11 years), Youth (aged 12-17 years), Adults (aged 18-64 years), and Older Adults (aged >=65 years). The new guidelines include a preamble to provide context and specific guidelines for each age group. The entire guideline development process was guided by the Appraisal of Guidelines for Research Evaluation (AGREE) II instrument, which is the international standard for clinical practice guideline development. Thus, the guidelines have gone through a rigorous and transparent developmental process; we based the recommendations herein on evidence from 3 systematic reviews, and the final guidelines benefitted from an extensive online and in-person consultation process with hundreds of stakeholders and key informants, both domestic and international. Since 2006, the products of our efforts resulted in the completion of 21 peer-reviewed journal articles (including 5 systematic reviews) that collectively guided this work. The process that Canadian researchers undertook to update the national physical activity guidelines represents the most current synthesis, interpretation, and application of the scientific evidence to date.

The early years represent a critical period for promoting physical activity. However, the amount of physical activity needed for healthy growth and development is not clear. Using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) framework, we aimed to present the best available evidence to determine the relationship between physical activity and measures of adiposity, bone and skeletal health, motor skill development, psychosocial health, cognitive development, and cardiometabolic health indicators in infants (1 month - 1 year), toddlers (1.1-3.0 years), and preschoolers (3.1-4.9 years). Online databases, personal libraries, and government documents were searched for relevant studies. Twenty-two articles, representing 18 unique studies and 12 742 enrolled participants, met inclusion criteria. The health indicators of interest were adiposity (n = 11), bone and skeletal health (n = 2), motor development (n = 4), psychosocial health (n = 3), cognitive development (n = 1), and cardiometabolic health indicators (n = 3); these indicators were pre-specified by an expert panel. Five unique studies involved infants, 2 involved toddlers, and 11 involved preschoolers. In infants, there was low- to moderate-quality evidence to suggest that increased or higher physical activity was positively associated with improved measures of adiposity, motor skill development, and cognitive development. In toddlers, there was moderate-quality evidence to suggest that increased or higher physical activity was positively associated with bone and skeletal health. In preschoolers, there was low- to high-quality evidence on the relationship between increased or higher physical activity and improved measures of adiposity, motor skill development, psychosocial health, and cardiometabolic health indicators. There was no serious inconsistency in any of the studies reviewed. This evidence can help to inform public health guidelines. (PROSPERO registration: CRD42011001243).

Background & aimsThe incidence of inflammatory bowel disease (IBD) is increasing internationally, particularly in nations with historically low rates. Previous reports of the epidemiology of pediatric-onset IBD identified a paucity of data. We systematically reviewed the global trends in incidence and prevalence of IBD diagnosed in individuals <21 years old over the first 2 decades of the 21st century.MethodsWe systematically reviewed studies indexed in MEDLINE, EMBASE, Airiti Library, and SciELO from January 2010 to February 2020 to identify population-based studies reporting the incidence and/or prevalence of IBD, Crohn’s disease, ulcerative colitis, and/or IBD-unclassified. Data from studies published before 2000 were derived from a previously published systematic review. We described the geographic distribution and trends in children of all ages and limiting to very early onset (VEO) IBD.ResultsA total of 131 studies from 48 countries were included. The incidence and prevalence of pediatric-onset IBD is highest in Northern Europe and North America and lowest in Southern Europe, Asia, and the Middle East. Among studies evaluating trends over time, most (31 of 37, 84%) studies reported significant increases in incidence and all (7 of 7) reported significant increases in prevalence. Data on the incidence and prevalence of VEO-IBD are limited to countries with historically high rates of IBD. Time trends in the incidence of VEO-IBD were visually heterogeneous.ConclusionsRates of pediatric-onset IBD continue to rise around the world and data are emerging from regions where it was not previously reported; however, there remains a paucity of data on VEO-IBD and on pediatric IBD from developing and recently developed countries. The incidence of inflammatory bowel disease (IBD) is increasing internationally, particularly in nations with historically low rates. Previous reports of the epidemiology of pediatric-onset IBD identified a paucity of data. We systematically reviewed the global trends in incidence and prevalence of IBD diagnosed in individuals <21 years old over the first 2 decades of the 21st century. We systematically reviewed studies indexed in MEDLINE, EMBASE, Airiti Library, and SciELO from January 2010 to February 2020 to identify population-based studies reporting the incidence and/or prevalence of IBD, Crohn’s disease, ulcerative colitis, and/or IBD-unclassified. Data from studies published before 2000 were derived from a previously published systematic review. We described the geographic distribution and trends in children of all ages and limiting to very early onset (VEO) IBD. A total of 131 studies from 48 countries were included. The incidence and prevalence of pediatric-onset IBD is highest in Northern Europe and North America and lowest in Southern Europe, Asia, and the Middle East. Among studies evaluating trends over time, most (31 of 37, 84%) studies reported significant increases in incidence and all (7 of 7) reported significant increases in prevalence. Data on the incidence and prevalence of VEO-IBD are limited to countries with historically high rates of IBD. Time trends in the incidence of VEO-IBD were visually heterogeneous. Rates of pediatric-onset IBD continue to rise around the world and data are emerging from regions where it was not previously reported; however, there remains a paucity of data on VEO-IBD and on pediatric IBD from developing and recently developed countries.

The Canadian Society for Exercise Physiology (CSEP), in partnership with the Healthy Active Living and Obesity Research Group (HALO) at the Children's Hospital of Eastern Ontario Research Institute, and in collaboration with ParticipACTION, and others, has developed the Canadian Sedentary Behaviour Guidelines for Children (aged 5-11 years) and Youth (aged 12-17 years). The guidelines include a preamble to provide context, followed by the specific recommendations for sedentary behaviour. The entire development process was guided by the Appraisal of Guidelines for Research Evaluation (AGREE) II instrument, which is the international standard for clinical practice guideline development. Thus, the guidelines have gone through a rigorous and transparent developmental process and the recommendations are based on evidence from a systematic review and interpretation of the research evidence. The final guidelines benefitted from an extensive online consultation process with 230 domestic and international stakeholders and key informants. The final guideline recommendations state that for health benefits, children (aged 5-11 years) and youth (aged 12-17 years) should minimize the time that they spend being sedentary each day. This may be achieved by (i) limiting recreational screen time to no more than 2 h per day - lower levels are associated with additional health benefits; and (ii) limiting sedentary (motorized) transport, extended sitting time, and time spent indoors throughout the day. These are the first evidence-based Canadian Sedentary Behaviour Guidelines for Children and Youth and provide important and timely recommendations for the advancement of public health based on a systematic synthesis, interpretation, and application of the current scientific evidence.

BACKGROUND: Privacy legislation in most jurisdictions allows the disclosure of health data for secondary purposes without patient consent if it is de-identified. Some recent articles in the medical, legal, and computer science literature have argued that de-identification methods do not provide sufficient protection because they are easy to reverse. Should this be the case, it would have significant and important implications on how health information is disclosed, including: (a) potentially limiting its availability for secondary purposes such as research, and (b) resulting in more identifiable health information being disclosed. Our objectives in this systematic review were to: (a) characterize known re-identification attacks on health data and contrast that to re-identification attacks on other kinds of data, (b) compute the overall proportion of records that have been correctly re-identified in these attacks, and (c) assess whether these demonstrate weaknesses in current de-identification methods. METHODS AND FINDINGS: Searches were conducted in IEEE Xplore, ACM Digital Library, and PubMed. After screening, fourteen eligible articles representing distinct attacks were identified. On average, approximately a quarter of the records were re-identified across all studies (0.26 with 95% CI 0.046-0.478) and 0.34 for attacks on health data (95% CI 0-0.744). There was considerable uncertainty around the proportions as evidenced by the wide confidence intervals, and the mean proportion of records re-identified was sensitive to unpublished studies. Two of fourteen attacks were performed with data that was de-identified using existing standards. Only one of these attacks was on health data, which resulted in a success rate of 0.00013. CONCLUSIONS: The current evidence shows a high re-identification rate but is dominated by small-scale studies on data that was not de-identified according to existing standards. This evidence is insufficient to draw conclusions about the efficacy of de-identification methods.

BACKGROUND: One of the strategic actions identified in the Global Action Plan on Physical Activity (PA) 2018-2030 is the enhancement of data systems and capabilities at national levels to support regular population surveillance of PA. Although national and international standardized surveillance of PA among children and adolescents has increased in recent years, challenges for the global surveillance of PA persist. The aims of this paper were to: (i) review, compare, and discuss the methodological inconsistencies in children and adolescents' physical activity prevalence estimates from intercontinental physical activity surveillance initiatives; (ii) identify methodological limitations, surveillance and research gaps. METHODS: Intercontinental physical activity surveillance initiatives for children and adolescents were identified by experts and through non-systematic literature searches. Prevalence of meeting PA guidelines by country, gender, and age were extracted when available. A tool was created to assess the quality of the included initiatives. Methods and PA prevalence were compared across data/studies and against the methodological/validity/translation differences. RESULTS: Eight intercontinental initiatives were identified as meeting the selection criteria. Methods and PA definition inconsistencies across and within included initiatives were observed, resulting in different estimated national prevalence of PA, and initiatives contradicting each other's cross-country comparisons. Three findings were consistent across all eight initiatives: insufficient level of PA of children and adolescents across the world; lower levels of PA among girls; and attenuation of PA levels with age. Resource-limited countries, younger children, children and adolescents not attending school, with disability or chronic conditions, and from rural areas were generally under/not represented. CONCLUSIONS: There are substantial inconsistencies across/within included initiatives, resulting in varying estimates of the PA situation of children and adolescents at the global, regional and national levels. The development of a new PA measurement instrument that would be globally accepted and harmonized is a global health priority to help improve the accuracy and reliability of global surveillance.

BACKGROUND: Although pregnant women are considered at high risk for severe influenza disease, comparative studies of maternal influenza and birth outcomes have not been comprehensively summarised. OBJECTIVE: To review comparative studies evaluating maternal influenza disease and birth outcomes. SEARCH STRATEGY: We searched bibliographic databases from inception to December 2014. SELECTION CRITERIA: Studies of preterm birth, small-for-gestational-age (SGA) birth or fetal death, comparing women with and without clinical influenza illness or laboratory-confirmed influenza infection during pregnancy. DATA COLLECTION AND ANALYSIS: Two reviewers independently abstracted data and assessed study quality. MAIN RESULTS: Heterogeneity across 16 studies reporting preterm birth precluded meta-analysis. In a subgroup of the highest-quality studies, two reported significantly increased preterm birth (risk ratios (RR) from 2.4 to 4.0) following severe 2009 pandemic H1N1 (pH1N1) influenza illness, whereas those assessing mild-to-moderate pH1N1 or seasonal influenza found no association. Five studies of SGA birth showed no discernible patterns with respect to influenza disease severity (pooled odds ratio 1.24; 95% CI 0.96-1.59). Two fetal death studies were of sufficient quality and size to permit meaningful interpretation. Both reported an increased risk of fetal death following maternal pH1N1 disease (RR 1.9 for mild-to-moderate disease and 4.2 for severe disease). CONCLUSIONS: Comparative studies of preterm birth, SGA birth and fetal death following maternal influenza disease are limited in number and quality. An association between severe pH1N1 disease and preterm birth and fetal death was reported by several studies; however, these limited data do not permit firm conclusions on the magnitude of any association. TWEETABLE ABSTRACT: Comparative studies are limited in quality but suggest severe pandemic H1N1 influenza increases preterm birth.

Seawater Mg:Ca and Sr:Ca ratios are biogeochemical parameters reflecting the Earth-ocean-atmosphere dynamic exchange of elements. The ratios' dependence on the environment and organisms' biology facilitates their application in marine sciences. Here, we present a measured single-laboratory dataset, combined with previous data, to test the assumption of limited seawater Mg:Ca and Sr:Ca variability across marine environments globally. High variability was found in open-ocean upwelling and polar regions, shelves/neritic and river-influenced areas, where seawater Mg:Ca and Sr:Ca ratios range from ∼4.40 to 6.40 mmol:mol and ∼6.95 to 9.80 mmol:mol, respectively. Open-ocean seawater Mg:Ca is semiconservative (∼4.90 to 5.30 mol:mol), while Sr:Ca is more variable and nonconservative (∼7.70 to 8.80 mmol:mol); both ratios are nonconservative in coastal seas. Further, the Ca, Mg, and Sr elemental fluxes are connected to large total alkalinity deviations from International Association for the Physical Sciences of the Oceans (IAPSO) standard values. Because there is significant modern seawater Mg:Ca and Sr:Ca ratios variability across marine environments we cannot absolutely assume that fossil archives using taxa-specific proxies reflect true global seawater chemistry but rather taxa- and process-specific ecosystem variations, reflecting regional conditions. This variability could reconcile secular seawater Mg:Ca and Sr:Ca ratio reconstructions using different taxa and techniques by assuming an error of 1 to 1.50 mol:mol, and 1 to 1.90 mmol:mol, respectively. The modern ratios' variability is similar to the reconstructed rise over 20 Ma (Neogene Period), nurturing the question of seminonconservative behavior of Ca, Mg, and Sr over modern Earth geological history with an overlooked environmental effect.

The objective of this study was to examine the microbial digestion and colonization of whole (W), halved (H) and quartered (Q) cereal grains within the rumen. Barley (Hordeum vulgare L.), maize (Zea mays L.), sorghum (Sorghum bicolor (L.) Moench), and wheat (Triticum aestivum L.) were placed in nylon bags in the rumen of a fistulated steer. In sacco DM disappearance (ISDMD) of W grain was lower (P &lt; 0.001) than that of H or Q grain. Once sectioned, wheat was most susceptible to microbial digestion followed by barley, sorghum and maize, respectively. Scanning electron microscopy showed that microbial colonization of W grain was restricted to fractured areas of the pericarp. Fracturing of the pericarp is necessary to allow rumen bacteria to gain access to the rapidly digestible nutrients of the endosperm. Initial colonization (2 h) of the endosperm of H and Q grains by rumen bacteria tended to be between large starch granules. After 24 h of exposure in the rumen, the endosperm of barley, wheat and sorghum was colonized by a variety of rumen bacteria. In contrast, regions of the germ and horny endosperm in maize were not colonized. The sequential colonization of the endosperm, culminating in the establishment of complex microbial consortia, is required for the digestion of cereal grains. Key words: Cereal, rumen bacteria, digestion, processing, concentrate

OBJECTIVE: Mindfulness-based stress reduction (MBSR) is a secular meditation training program that reduces depressive symptoms. Little is known, however, about the degree to which a participant's spiritual and religious background, or other demographic characteristics associated with risk for depression, may affect the effectiveness of MBSR. Therefore, this study tested whether individual differences in religiosity, spirituality, motivation for spiritual growth, trait mindfulness, sex, and age affect MBSR effectiveness. METHODS: As part of an open trial, multiple regression was used to analyze variation in depressive symptom outcomes among 322 adults who enrolled in an 8-week, community-based MBSR program. RESULTS: As hypothesized, depressive symptom severity decreased significantly in the full study sample (d=0.57; p<0.01). After adjustment for baseline symptom severity, moderation analyses revealed no significant differences in the change in depressive symptoms following MBSR as a function of spirituality, religiosity, trait mindfulness, or demographic variables. Paired t tests found consistent, statistically significant (p<0.01) reductions in depressive symptoms across all subgroups by religious affiliation, intention for spiritual growth, sex, and baseline symptom severity. After adjustment for baseline symptom scores, age, sex, and religious affiliation, a significant proportion of variance in post-MBSR depressive symptoms was uniquely explained by changes in both spirituality (β=-0.15; p=0.006) and mindfulness (β=-0.17; p<0.001). CONCLUSIONS: These findings suggest that MBSR, a secular meditation training program, is associated with improved depressive symptoms regardless of affiliation with a religion, sense of spirituality, trait level of mindfulness before MBSR training, sex, or age. Increases in both mindfulness and daily spiritual experiences uniquely explained improvement in depressive symptoms.

Cardiorespiratory fitness (CRF) is a good summative measure of the body's ability to perform continuous, rhythmic, dynamic, large-muscle group physical activity, and exercise. In children, CRF is meaningfully associated with health, independent of physical activity levels, and it is an important determinant of sports and athletic performance. Although gas-analyzed peak oxygen uptake is the criterion physiological measure of children's CRF, it is not practical for population-based testing. Field testing offers a simple, cheap, practical alternative to gas analysis. The 20-m shuttle run test (20mSRT)-a progressive aerobic exercise test involving continuous running between 2 lines 20 m apart in time to audio signals-is probably the most widely used field test of CRF. This review aims to clarify the international utility of the 20mSRT by synthesizing the evidence describing measurement variability, validity, reliability, feasibility, and the interpretation of results, as well as to provide future directions for international surveillance. The authors show that the 20mSRT is an acceptable, feasible, and scalable measure of CRF and functional/exercise capacity, and that it has moderate criterion validity and high to very high reliability. The assessment is pragmatic, easily interpreted, and results are transferable to meaningful and understandable situations. The authors recommend that CRF, assessed by the 20mSRT, be considered as an international population health surveillance measure to provide additional insight into pediatric population health.

Febrile-infection related epilepsy syndrome (FIRES) is a devastating neurological condition characterized by a febrile illness preceding new onset refractory status epilepticus (NORSE). Increasing evidence suggests innate immune dysfunction as a potential pathological mechanism. We report an international retrospective cohort of 25 children treated with anakinra, a recombinant interleukin-1 receptor antagonist, as an immunomodulator for FIRES. Anakinra was potentially safe with only one child discontinuing therapy due to infection. Earlier anakinra initiation was associated with shorter duration of mechanical ventilation, ICU and hospital length of stay. Our retrospective data lay the groundwork for prospective consensus-driven cohort studies of anakinra in FIRES.

Differential privacy has gained a lot of attention in recent years as a general model for the protection of personal information when used and disclosed for secondary purposes. It has also been proposed as an appropriate model for health data. In this paper we review the current literature on differential privacy and highlight important general limitations to the model and the proposed mechanisms. We then examine some practical challenges to the application of differential privacy to health data. The review concludes by identifying areas that researchers and practitioners in this area need to address to increase the adoption of differential privacy for health data.

More physical activity and less sedentary behavior is beneficial for children and adolescents. Worldwide, gender differences are >8% favorable for men and the Latin-American region presents an even higher level of insufficient physical activity among women, with a lack of information in young population. Thus, the aim of the current study was to describe the gender differences in physical activity and recreational sedentary behavior in children and adolescents from Latin-American countries. The targeted age range was 5 to 17 years and included 219,803 participants (106,698 boys and 113,105 girls) from 33 out of 47 Latin-American countries identified. Physical activity guidelines from the World Health Organization (≥60 minutes of moderate-to-vigorous physical activity seven days of the week) and <3 hours recreational sedentary behavior daily were the references. In general, boys showed a higher prevalence of meeting physical activity guidelines in comparison with girls. A higher proportion of girls met the <3 hours recreational sedentary behavior cut-point in only ten countries. Thirty percent of the identified countries had no available data. The majority had data from the Global School-based Student Health Survey with data principally on adolescents and only 11/33 countries reported data in the last 5-year period. In conclusion, gender differences in the compliance with physical activity guidelines and the <3 hours recreational sedentary behavior cut-point are evident among children and adolescents from Latin-American countries, with boys being more active than girls.

Prenatal diagnosis (PND) is offered routinely as part of pregnancy care to a large number of women at increased risk of fetal anomalies. Despite an extraordinary growth in the use of PND and significant resource allocation, few studies have examined outcomes of PND counseling, and virtually no research has evaluated the relative efficacy of various approaches to genetic counseling. This study was a randomized trial that compared which counseling methods - individual, group, and use of a decision aid - are effective in PND counseling for women of advanced maternal age (>/=35 years) and their partners. Three hundred and fifty-two women and 225 partners completed pre- and post-intervention questionnaires assessing changes in knowledge, decisional conflict, state anxiety, satisfaction, use of PND, and pregnancy outcomes. All participants showed a significant increase in knowledge and a decrease in decisional conflict post intervention. Those in the group intervention showed a significantly greater increase in knowledge than those in the individual counseling intervention. While high levels of satisfaction were reported by all, those in individual counseling were significantly more satisfied than those receiving group counseling or the decision aid. This study has shown unique benefits with each type of intervention such that women and their partners preferred individual genetic counseling, while they learned best in group-counseling sessions, and experienced the least decisional conflict regarding genetic testing with a decision aid.

BACKGROUND: Electronic data capture (EDC) tools provide automated support for data collection, reporting, query resolution, randomization, and validation, among other features, for clinical trials. There is a trend toward greater adoption of EDC tools in clinical trials, but there is also uncertainty about how many trials are actually using this technology in practice. A systematic review of EDC adoption surveys conducted up to 2007 concluded that only 20% of trials are using EDC systems, but previous surveys had weaknesses. OBJECTIVES: Our primary objective was to estimate the proportion of phase II/III/IV Canadian clinical trials that used an EDC system in 2006 and 2007. The secondary objectives were to investigate the factors that can have an impact on adoption and to develop a scale to assess the extent of sophistication of EDC systems. METHODS: We conducted a Web survey to estimate the proportion of trials that were using an EDC system. The survey was sent to the Canadian site coordinators for 331 trials. We also developed and validated a scale using Guttman scaling to assess the extent of sophistication of EDC systems. Trials using EDC were compared by the level of sophistication of their systems. RESULTS: We had a 78.2% response rate (259/331) for the survey. It is estimated that 41% (95% CI 37.5%-44%) of clinical trials were using an EDC system. Trials funded by academic institutions, government, and foundations were less likely to use an EDC system compared to those sponsored by industry. Also, larger trials tended to be more likely to adopt EDC. The EDC sophistication scale had six levels and a coefficient of reproducibility of 0.901 (P< .001) and a coefficient of scalability of 0.79. There was no difference in sophistication based on the funding source, but pediatric trials were likely to use a more sophisticated EDC system. CONCLUSION: The adoption of EDC systems in clinical trials in Canada is higher than the literature indicated: a large proportion of clinical trials in Canada use some form of automated data capture system. To inform future adoption, research should gather stronger evidence on the costs and benefits of using different EDC systems.

Accurate diagnosis is the cornerstone of medicine; it is essential for informed care and promoting patient and family well-being. However, families with a rare genetic disease (RGD) often spend more than five years on a diagnostic odyssey of specialist visits and invasive testing that is lengthy, costly, and often futile, as 50% of patients do not receive a molecular diagnosis. The current diagnostic paradigm is not well designed for RGDs, especially for patients who remain undiagnosed after the initial set of investigations, and thus requires an expansion of approaches in the clinic. Leveraging opportunities to participate in research programs that utilize new technologies to understand RGDs is an important path forward for patients seeking a diagnosis. Given recent advancements in such technologies and international initiatives, the prospect of identifying a molecular diagnosis for all patients with RGDs has never been so attainable, but achieving this goal will require global cooperation at an unprecedented scale.

BACKGROUND: Acute hematogenous osteomyelitis (AHO) occurs primarily in children and is believed to evolve from bacteremia followed by localization of infection to the metaphysis of bones. Currently, there is no consensus on the route and duration of antimicrobial therapy to treat AHO. METHODS: We conducted a systematic review of a short versus long course of treatment for AHO due primarily to Staphylococcus aureus in children aged 3 months to 16 years. We searched Medline, Embase and the Cochrane trials registry for controlled trials. Clinical cure rate at 6 months was the primary outcome variable, and groups receiving less than 7 days of intravenous therapy were compared with groups receiving one week or longer of intravenous antimicrobials. RESULTS: 12 eligible prospective studies, one of which was randomized, were identified. The overall cure rate at 6 months for the short course of intravenous therapy was 95.2% (95% CI = 90.4 - 97.7) compared to 98.8% (95% CI = 93.6, 99.8) for the longer course of therapy. There was no significant difference in the duration of oral therapy between the two groups. CONCLUSIONS: Given the potential increased morbidity and cost associated with longer courses of intravenous therapy, this finding should be confirmed through a randomized controlled equivalence trial

OBJECTIVE: To quantify moral distress in neonatal ICU and PICU clinicians and to identify associated factors. DESIGN: A national cross-sectional survey of clinicians working in an neonatal ICU or PICU. Moral distress was assessed with the Moral Distress Scale-Revised and by self-rating. Depersonalization was assessed on the subscale of the Maslach Burnout Inventory. Respondents reported their attendance at each of six hospital supports that may serve to mitigate moral distress in frontline staff. Analyses compared outcomes across respondent characteristics and hierarchical linear regression evaluated individual, ICU, hospital, and regional effects. SETTING: Eligible ICUs were PICUs and level-3 neonatal ICUs in Canada. SUBJECTS: Eligible participants had worked in the participating ICU for more than 3 months. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We identified 54 eligible ICUs from 31 hospitals. Forty-nine Canadian neonatal ICUs and PICUs (91%) contributed 2,852 complete responses for a 45.2% response rate. Most respondents were nurses (64.9%) or from a neonatal ICU (66.5%). The median and interquartile range Moral Distress Scale-Revised were 79 (52-113); 997 respondents (34.2%) had Moral Distress Scale-Revised scores greater than or equal to 100, and 234 respondents (8.3%) strongly agreed that work caused them significant moral distress. Nurses had a median (interquartile range) Moral Distress Scale-Revised score of 85 (57-121), 19 points higher than physicians and 8 points higher than respiratory therapists (p < 0.0001). Moral Distress Scale-Revised scores increased from 53 (35-79) for those working in ICU less than 1 year to 83 (54-120) in those working in ICU more than 30 years (p < 0.0001); 22.5% reported high degrees of depersonalization, which was associated with moral distress (p < 0.0001). Variability in Moral Distress Scale-Revised scores was explained by individual-level (92%), hospital-level (5%), and ICU-level effects (1%). Frequency of participation in potentially mitigating hospital supports had small effects (< 10 points) on mean Moral Distress Scale-Revised scores. CONCLUSIONS: Moral distress is common in clinicians working in ICUs for children. Addressing moral distress will require interventions tailored to individuals in higher-risk groups.

BACKGROUND: De-identification is a common way to protect patient privacy when disclosing clinical data for secondary purposes, such as research. One type of attack that de-identification protects against is linking the disclosed patient data with public and semi-public registries. Uniqueness is a commonly used measure of re-identification risk under this attack. If uniqueness can be measured accurately then the risk from this kind of attack can be managed. In practice, it is often not possible to measure uniqueness directly, therefore it must be estimated. METHODS: We evaluated the accuracy of uniqueness estimators on clinically relevant data sets. Four candidate estimators were identified because they were evaluated in the past and found to have good accuracy or because they were new and not evaluated comparatively before: the Zayatz estimator, slide negative binomial estimator, Pitman's estimator, and mu-argus. A Monte Carlo simulation was performed to evaluate the uniqueness estimators on six clinically relevant data sets. We varied the sampling fraction and the uniqueness in the population (the value being estimated). The median relative error and inter-quartile range of the uniqueness estimates was measured across 1000 runs. RESULTS: There was no single estimator that performed well across all of the conditions. We developed a decision rule which selected between the Pitman, slide negative binomial and Zayatz estimators depending on the sampling fraction and the difference between estimates. This decision rule had the best consistent median relative error across multiple conditions and data sets. CONCLUSION: This study identified an accurate decision rule that can be used by health privacy researchers and disclosure control professionals to estimate uniqueness in clinical data sets. The decision rule provides a reliable way to measure re-identification risk.