Temporal and geographical variations in survival of children born with congenital anomalies in Europe: A multi-registry cohort study.

BACKGROUND: Congenital anomalies are a major cause of perinatal, neonatal and infant mortality. OBJECTIVES: The aim was to investigate temporal changes and geographical variation in survival of children with major congenital anomalies (CA) in different European areas. METHODS: In this population-based linkage cohort study, 17 CA registries members of EUROCAT, the European network for the surveillance of CAs, successfully linked data on 115,219 live births with CAs to mortality records. Registries estimated Kaplan-Meier survival at 28 days and 5 years of age and fitted Cox's proportional hazards models comparing mortality at 1 year and 1-9 years of age for children born during 2005-2014 with those born during 1995-2004. The hazard ratios (HR) from each registry were combined centrally using a random-effects model. The 5-year survival conditional on having survived to 28 days of age was calculated. RESULTS: The overall risk of death by 1 year of age for children born with any major CA in 2005-2014 decreased compared to 1995-2004 (HR 0.68, 95% confidence interval [CI] 0.53, 0.89). Survival at 5 years of age ranged between registries from 97.6% to 87.0%. The lowest survival was observed for the registry of OMNI-Net (Ukraine) (87.0%, 95% CI 86.1, 87.9). CONCLUSIONS: Survival of children with CAs improved for births in 2005-2014 compared with 1995-2004. The use of CA registry data linked to mortality data enables investigation of survival of children with CAs. Factors such as defining major CAs, proportion of terminations of pregnancy for foetal anomaly, source of mortality data and linkage methods are important to consider in the design of future studies and in the interpretation of the results on survival of children with CAs.

Effect of heat and singeing on stable hydrogen isotope ratios of bird feathers and implications for their use in determining geographic origin.

RATIONALE: Stable hydrogen isotope (δ2 H) ratios of animal tissues are useful for assessing movement and geographic origin of mobile organisms. However, it is uncertain whether heat and singeing affects feather δ2 H values and thus subsequent geographic assignments. This is relevant for birds of conservation interest that are burned and killed at concentrating solar-energy facilities that reflect sunlight to a receiving tower and generate a solar flux field. METHODS: We used a controlled experiment to test the effect of known heat loads (exposure to 200, 250 or 300°C for 1 min) on the morphology and δ2 H values of feathers from two songbird species. Subsequently, we examined the effects of singeing on δ2 H values of feathers from three other songbird species that were found dead in the field at a concentrating solar-energy facility. RESULTS: Relative to control samples, heating caused visual morphological changes to feathers, including shriveling at 250°C and charring at 300°C. The δ2 H values significantly declined by a mean of 27.8‰ in experimental samples exposed to 300°C. There was no statistically detectable difference between δ2 H values of the singed and unsinged portions of field-collected feathers from the same bird. CONCLUSIONS: Limited singeing that did not dramatically alter the feather morphology did not substantially affect δ2 H values of feathers from these songbirds. However, higher temperatures induced charring and reduced δ2 H values. Therefore, severely charred feathers should be avoided when selecting feathers for δ2 H-based assessment of geographic origin.

Social Media Use and Sexual Risk Reduction Behavior Among Minority Youth: Seeking Safe Sex Information.

BACKGROUND: Sexual health is an important area of study-particularly for minority youth and youth living in disadvantaged neighborhoods. OBJECTIVES: The purpose of the research was to examine the sources of sexual health information associated with youth adopting sexual risk reduction behaviors. METHODS: Data collection took place in a small city in the Northeastern United States using cross-sectional behavioral surveys and modified venue-based sampling. Participants included 249 African American and Latino youth aged 13-24. Participants reported their sources of information about contraception and human immunodeficiency virus/sexually transmitted disease, such as TV/movies, parents, social media; their intentions to have sex; and condom and contraception use during their last sexual activity. Social media use, past pregnancy experience, past sexual history, age, and gender were also measured. Standard tests of bivariate association (chi-square and F tests) were used to examine initial associations between sexual risk reduction behavior and exposure to sexual risk reduction information on social media. Logistic regression models were used to test multivariate relationships between information sources and sexual risk reduction behavior. RESULTS: Youth who were exposed to sexual health messages on social media were 2.69 times (p < .05) and 2.49 times (p < .08) more likely to have used contraception or a condom at last intercourse, respectively. Parents, schools, or traditional media as information sources were not significantly associated with contractive use or condom use at last intercourse. DISCUSSION: Youth sexual behavior is increasingly informed by social media messages. Health practitioners should utilize social media as an important health promotion tool.

A Case of Unsuspected Laryngeal Atresia With Comorbid Tracheoesophageal Fistula and Cardiac Defects.

Laryngeal atresia is a rare congenital condition that presents with hypoxia and failed intubation attempts at birth. When diagnosed prenatally, options exist to obtain airway access during delivery. However, postnatal diagnosis requires a high degree of clinical suspicion and the prompt initiation of surgical airway management in order to avoid morbidity and mortality.

A Novel Role for Physical Therapists in Infection Prevention and Control in Response to the COVID-19 Pandemic: An Administrative Case Report.

OBJECTIVE: The purpose of this case report is to describe the development, implementation, and sustained use of a Rehabilitation Infection Prevention and Control Team (RIPCT) comprised of physical therapists in response to the COVID-19 pandemic. It also highlights how physical therapists are equipped to serve not only in typical clinical positions but also in nontraditional roles in healthcare. METHODS: The RIPCT served as an extension of the infection prevention and control (IPC) department. The team engaged in self-directed learning and worked alongside a physician mentor to acquire the knowledge and visibility needed to identify, triage, and address pandemic-related questions. Through rounding on units, on-site environmental assessments, and electronic communication, the RIPCT aided in navigating uncertainty, solving problems, and implementing changes for staff and patient safety. RESULTS: The RIPCT addressed safety concerns of 532 rehabilitation professionals, developed rehabilitation IPC policy, facilitated the reopening of 11 ambulatory sites, and created a new pathway to address future rehabilitation IPC needs. A survey of rehabilitation professionals indicated perceived effectiveness of physical therapists filling this role. CONCLUSION: The RIPCT successfully provided clear and consistent education as well as safe practice recommendations to staff and patients across a variety of disciplines and settings. The team quickly incorporated new knowledge and collaborated effectively in a nontraditional role within the healthcare system. The use of a semi-formal learning model with staff level clinicians as champions facilitated translation of IPC-related knowledge in a time of uncertainty throughout the healthcare community. IMPACT: The educational background, professional values, and communication skills of physical therapists allowed for successful integration into the IPC department to ensure staff and patient safety. Healthcare systems should consider utilization of physical therapists in nontraditional multidisciplinary clinical roles.

Quality of Life and Depression Symptoms After Therapy De-Escalation in HPV+ Oropharyngeal Squamous Cell Carcinoma: A Nonrandomized Controlled Trial.

Importance: Despite interest in therapy de-escalation for survivors of human papillomavirus-mediated oropharyngeal squamous cell carcinoma (HPV-positive OPSCC), the association of de-escalated therapy with patient-reported quality of life (QoL) outcomes and burden of depressive symptoms remains unclear. Objective: To identify associations between clinicopathologic and therapeutic variables with patient-reported QoL outcomes and depression symptom burden in patients with HPV-positive OPSCC, who were enrolled in a therapy de-escalation trial. Design, Setting, and Participants: In this nonrandomized controlled, open-label, curative-intent therapy de-escalation clinical trial in adults with stage I, II, and III HPV-positive OPSCC, patients were recruited from a high-volume head and neck oncology practice. Main Outcomes and Measures: The main outcomes of this study included quantitative, patient-reported QoL and depression symptoms per well-validated inventories. Patient-reported QoL was based on Functional Assessment of Cancer Therapy-Head & Neck (FACT-HN) scores (range, 0-148; lower score indicates inferior QoL). Patient-reported depression-related symptom burden was based on Quick Inventory of Depressive Symptomatology-Self-Report (QIDS-SR) scores (range, 0-27; a higher score indicates a higher burden of depression symptoms). Baseline clinicopathologic and treatment variables were paired with FACT-HN and QIDS-SR scores at baseline, 3, 6, 12, 24, and 36 months. Linear mixed-effect models with a random intercept were used for each participant and fixed effects for other measures. Regression coefficients are reported with 95% CIs. Results: A total of 95 patients were followed up for a median (IQR) of 2.2 (1.6-3.2) years. Of these, 93 patients (98%) were male with a mean (SD) age of 60.5 (8.2) years. Overall, 54 participants (57%) had a history of current or former smoking, 47 (50%) underwent curative-intent surgery (with or without adjuvant therapy), and 48 (50%) underwent primary radiotherapy (with or without chemotherapy). The median (IQR) radiotherapy dose was 60 (60-70) Gy. Five deaths and 2 recurrence events were observed (mean [SD] recurrence interval, 1.4 [1.5] years). A higher radiotherapy dose was the only modifiable factor associated with inferior patient-reported QoL (lower FACT-HN) (coefficient, -0.66 [95% CI, -1.09 to -0.23]) and greater burden of depression-related symptoms (higher QIDS-SR) (coefficient, 0.11 [95% CI, 0.04-0.19]). With the 70-Gy dose as reference, improvements in FACT-HN and QIDS-SR scores were identified when patients received 51 to 60 Gy (coefficient, 12.75 [95% CI, 4.58-20.92] and -2.17 [-3.49 to -0.85], respectively) and 50 Gy or lower (coefficient, 15.03 [4.36-25.69] and -2.80 [-4.55 to -1.04]). Conclusions and Relevance: In this nonrandomized controlled, open-label, curative-intent therapy de-escalation trial, a higher radiotherapy dose was associated with inferior patient-reported QoL and a greater burden of depression-related symptoms. This suggests opportunities for improved QoL outcomes and reduced depression symptom burden with a reduction in radiotherapy dose. Trial Registration: ClinicalTrials.gov Identifier: NCT04638465.

Researchers on research integrity: a survey of European and American researchers.

BACKGROUND: Reports of questionable or detrimental research practices (QRPs) call into question the reliability of scientific evidence and the trustworthiness of research. A critical component of the research ecosystem is the organization within which research takes place. We conducted a survey to explore the attitudes and beliefs of European and American researchers about the organisations in which they work, their own research practices and their attitudes towards research integrity and research integrity policies. METHODS: We administered an online survey (International Research Integrity Survey (IRIS)) to 2,300 active researchers based in the US and 45,000 in Europe (including UK, Norway, Iceland and Switzerland).  We employed a stratified probability sample of the authors of research articles published between 2016 and 2020 included in Clarivate's Web of Science citation database. Coverage includes researchers in the humanities, social sciences, natural sciences and medical sciences, who hold at least a master's level degree. RESULTS: In comparison to researchers in the US, European researchers admit to more QRPs and are less confident in maintaining high research integrity (RI) standards. In the US and Europe, many researchers judge their organization to fall short of best RI practice. All researchers recognize the benefits of RI, reliable knowledge and the trust of colleagues and the public, and there is support for RI training particularly among Europeans. CONCLUSION: To create and maintain a culture of integrity in scientific research, a collective commitment from researchers, their institutions and funders is needed. Researchers rely on many channels of communication about research integrity and thus the involvement of many different participants in the research system is required to make improvements. Policies must be developed to reinforce best practice rather than being seen as an irrelevance to the real business of research.

Causes of death in children with congenital anomalies up to age 10 in eight European countries.

BACKGROUND: Congenital anomalies (CAs) increase the risk of death during infancy and childhood. This study aimed to evaluate the accuracy of using death certificates to estimate the burden of CAs on mortality for children under 10 years old. METHODS: Children born alive with a major CA between 1 January 1995 and 31 December 2014, from 13 population-based European CA registries were linked to mortality records up to their 10th birthday or 31 December 2015, whichever was earlier. RESULTS: In total 4199 neonatal, 2100 postneonatal and 1087 deaths in children aged 1-9 years were reported. The underlying cause of death was a CA in 71% (95% CI 64% to 78%) of neonatal and 68% (95% CI 61% to 74%) of postneonatal infant deaths. For neonatal deaths the proportions varied by registry from 45% to 89% and by anomaly from 53% for Down syndrome to 94% for tetralogy of Fallot. In children aged 1-9, 49% (95% CI 42% to 57%) were attributed to a CA. Comparing mortality in children with anomalies to population mortality predicts that over 90% of all deaths at all ages are attributable to the anomalies. The specific CA was often not reported on the death certificate, even for lethal anomalies such as trisomy 13 (only 80% included the code for trisomy 13). CONCLUSIONS: Data on the underlying cause of death from death certificates alone are not sufficient to evaluate the burden of CAs on infant and childhood mortality across countries and over time. Linked data from CA registries and death certificates are necessary for obtaining accurate estimates.

Ten-Year Survival of Children With Congenital Anomalies: A European Cohort Study.

OBJECTIVES: To investigate the survival up to age 10 for children born alive with a major congenital anomaly (CA). METHODS: This population-based linked cohort study (EUROlinkCAT) linked data on live births from 2005 to 2014 from 13 European CA registries with mortality data. Pooled Kaplan-Meier survival estimates up to age 10 were calculated for these children (77 054 children with isolated structural anomalies and 4011 children with Down syndrome). RESULTS: The highest mortality of children with isolated structural CAs was within infancy, with survival of 97.3% (95% confidence interval [CI]: 96.6%-98.1%) and 96.9% (95% CI: 96.0%-97.7%) at age 1 and 10, respectively. The 10-year survival exceeded 90% for the majority of specific CAs (27 of 32), with considerable variations between CAs of different severity. Survival of children with a specific isolated anomaly was higher than in all children with the same anomaly when those with associated anomalies were included. For children with Down syndrome, the 10-year survival was significantly higher for those without associated cardiac or digestive system anomalies (97.6%; 95% CI: 96.5%-98.7%) compared with children with Down syndrome associated with a cardiac anomaly (92.3%; 95% CI: 89.4%-95.3%), digestive system anomaly (92.8%; 95% CI: 87.7%-98.2%), or both (88.6%; 95% CI: 83.2%-94.3%). CONCLUSIONS: Ten-year survival of children born with congenital anomalies in Western Europe from 2005 to 2014 was relatively high. Reliable information on long-term survival of children born with specific CAs is of major importance for parents of these children and for the health care professionals involved in their care.

Survival of children with rare structural congenital anomalies: a multi-registry cohort study.

BACKGROUND: Congenital anomalies are the leading cause of perinatal, neonatal and infant mortality in developed countries. Large long-term follow-up studies investigating survival beyond the first year of life in children with rare congenital anomalies are costly and sufficiently large standardized cohorts are difficult to obtain due to the rarity of some anomalies. This study aimed to investigate the survival up to 10 years of age of children born with a rare structural congenital anomaly in the period 1995-2014 in Western Europe. METHODS: Live births from thirteen EUROCAT (European network for the epidemiological surveillance of congenital anomalies) population-based registries were linked to mortality records. Survival for 12,685 live births with one of the 31 investigated rare structural congenital anomalies (CAs) was estimated at 1 week, 4 weeks and 1, 5 and 10 years of age within each registry and combined across Europe using random effects meta-analyses. Differences between registries were evaluated for the eight rare CAs with at least 500 live births. RESULTS: Amongst the investigated CAs, arhinencephaly/holoprosencephaly had the lowest survival at all ages (58.1%, 95% Confidence Interval (CI): 44.3-76.2% at 1 week; 47.4%, CI: 36.4-61.6% at 1 year; 35.6%, CI: 22.2-56.9% at 10 years). Overall, children with rare CAs of the digestive system had the highest survival (> 95% at 1 week, > 84% at 10 years). Most deaths occurred within the first four weeks of life, resulting in a 10-year survival conditional on surviving 4 weeks of over 95% for 17 out of 31 rare CAs. A moderate variability in survival between participating registries was observed for the eight selected rare CAs. CONCLUSIONS: Pooling standardised data across 13 European CA registries and the linkage to mortality data enabled reliable survival estimates to be obtained at five ages up to ten years. Such estimates are useful for clinical practice and parental counselling.

Barriers and Facilitators for Mental Health Service Use Among Racial/Ethnic Minority Adolescents: A Systematic Review of Literature.

Introduction: Mental disorders represent serious public health concerns in the U.S. Compared with Whites, racial/ethnic minority adolescents are more likely to be affected by mental disorders but less likely to use mental health services. This systematic review aimed to summarize factors related to mental health service use among minority adolescents in the U.S. as identified in previous research. Methodology: Following the PRISMA guideline, we systematically searched seven databases for peer reviewed articles related to barriers and facilitators of mental health service use among racial/ethnic minority adolescents. Results: Thirty-two quantitative studies met our inclusion criteria, among which 12 studies (37.5%) sampled mostly Blacks or African Americans, 6 studies (18.7%) focused primarily on Hispanics or Latin/a/x, including Mexican Americans and Puerto Ricans, and 4 studies (12.5%) were mostly Asian Americans (e.g., Chinese, Vietnamese). Based on the socio-ecological framework, 21 studies (65.6%) identified adolescent-related barriers and facilitators of mental health service use, including biological (e.g., age, gender), clinical (e.g., symptom severity), behavioral (e.g., drug/alcohol use), and psychological characteristics (e.g., internal asset) of minority youth. Ten studies (31.3%) identified parents-related factors that influenced minority adolescent mental health service use, including parental perceptions and beliefs, family and parenting issues, and demographic characteristics. Primary factors at the therapist level included ethnic match between patient and practitioner, relationship with healthcare practitioners, and patient-therapist co-endorsement of etiological beliefs. Fifteen studies (46.9%) identified factors influencing minority adolescent mental health service use at the contextual/structural level, including household income, insurance status, and family structure. Lastly, acculturation and school experiences were major factors at the social/cultural level that influence minority adolescent service use. Conclusion: More empirical studies are needed to understand the mechanism underlying minority adolescents' unmet mental health service needs. Culturally competent interventions are warranted to engage minority adolescents with mental disorders into treatment.