National Child Research Articles

The case of Kinsburn’s Encephalopathy in a child with neuroblastoma of posterior mediastinum

Opsoclonus-myoclonus-ataxia syndrome (OMAS) is an autoimmune rare disease of the central nervous system with lesion of the cerebellum and its ligaments. Purpose - to present a case of the rare Kinsburn’s Encephalopathy - OMAS and to attract the attention to its timely diagnosis. Clinical case. A child at the age of 1 year and 9 months was observed in the neurological department of the National Children’s Specialized Hospital “OKHMATDYT”. Neurological status: eyes opsoclonus, truncal tremor, ataxia of the cerebellum. There were also changes in behavior and a sleep disorder. She became sick in 1 month after acute respiratory infection. True diagnosis was made: Kinsburn’s Encephalopathy - opsoclonus-myoclonus syndrome. A study of the child’s immune status was made and, most importantly, computerized tomography (CT) of the whole body. Mediastinal neuroblastoma was diagnosed. In addition to the diagnosis, the child receive adequate therapy - intravenous immunoglobulin at a dose of 2 g/kg for a 5-day course. On the background of the received therapy, the child was marked with positive dynamics, she began to walk by herself, the atactic syndrome diminished, opsoclonus remained unchanged. Consequently, the main cause of autoimmune defeat of the nervous system was detected and the child was directed to the further examination and treatment to the Cancer Institute of the National Academy of Medical Science of Ukraine. Radical removal of the left hemopleura neuroblastoma was made. According to the results of morphological and immunohistochemistry tests, the phenotype obtained in the material of the operation is characteristic of the neuroblastoma (ICD-O code 9500/3), pT1bpN0M0, negative form. In the future, the child continued to receive courses of immunosuppressive therapy. The research was carried out in accordance with the principles of the Helsinki Declaration. The informed consent of the patient was obtained for conducting the studies. No conflict of interests was declared by the authors.

Tracing settler state responsibility for structural harm: Canadian Human Rights Tribunal case on First Nations child welfare

ABSTRACT This article discusses ideas of causation and responsibility for long-term, structural harm perpetuated through settler colonial institutions. Examining the case of a human rights complaint over discrimination of First Nation children in Canada’s child welfare system, the article looks at challenges of accommodating such complex harms in the framework of legal liability emphasizing immediate causation and impact. In 2016, the Canadian Human Rights Tribunal ruled that the federal government’s funding policy of child welfare services on First Nation reserves leads to disproportionate removals of children from their homes, and in 2019 it ordered the government to financially compensate children and caregivers impacted. According to the government's defense no direct connection could be proved between the funding policy and the removals, and harm resulting from the removals could only be assessed individually. The article traces how the decisions challenge these arguments by extending the scope of the harm at stake from individual removals to historical and ongoing formation of circumstances that make them happen. Setting the case in the historical context of intergenerational harm caused to First Nation kin and community relations by colonial policies, I suggest, the decisions challenge discourses that locate responsibility for such harms in the past.

Does higher education matter for health in the UK?

Using six sweeps of data from the 1958 British National Child Development Study (NCDS), we employ a quasi-parametric approach of propensity score matching to estimate the impacts of higher education attainment on a wide range of health-related outcomes for cohorts at ages 33, 42, and 50. The non-pecuniary benefits of higher education on health are substantial. Cohorts with higher levels of education are more likely to report better health, maintain a healthy weight, refrain from smoking, exhibit a lower frequency of alcohol consumption, and are less likely to be obese. The effects on self-reported health, body mass index (BMI), drinking alcohol increase with age, but continuously decrease with smoking frequency. When considering gender heterogeneity, higher education has a more significant effect on BMI and the likelihood of obesity for males, while it has a greater impact on self-reported health, drinking alcohol, and smoking frequencies for females. Furthermore, we find no significant evidence that higher education reduces the likelihood of depression. The results of the Rosenbaum bounds sensitivity analysis suggest that, although our overall results demonstrate robustness, there may still be unobserved hidden bias in the relationship between higher education and self-reported health.

Barriers to Education for Children With Neurodisabilities in a Developing Country.

Despite having equal rights to education, children with neurodisability (CWND) continue to face a myriad of barriers to education. This cross-sectional survey aimed to investigate the barriers to education among CWND who attended follow-up at a Malaysian tertiary hospital. Sixty-two caregivers of CWND completed a questionnaire which included the 'Washington Group/United Nations Children's Fund (UNICEF) Child Functioning Module', type of schooling and open-ended questions for barriers to education. The out-of-school rate was 16/62 (26%). The level of schooling (i.e. not in school, special education or mainstream class) was strongly associated with difficulties in mobility, self-care, communication, controlling behaviour and getting along with other children. Five themes identified by caregivers as barriers to education were 'school infrastructure', 'inclusive opportunity, staffing and teacher's training', 'social environment', 'child's intrinsic factor'and 'practical limitations'. Practical solutions to overcome the significant barriers to education are required to address the unmet educational needs of CWND.

‘I danced on the road to the Macarena song which felt a bit naughty’: Affective entanglements and the wayfaring pandemic child

This paper applies a posthumanist lens, informed by the work of Hollett and Ehret and of Ingold, to consider children’s playful affective entanglements with the human and the more-than-human during fluctuating periods of social distancing in the COVID-19 pandemic. Through this refracting theoretical lens, I (re)examine a selection of play and leisure experiences of an emergent subject – the pandemic child – during the national U.K. lockdowns of 2020 and 2021. Via a national online, qualitative survey, children and families were invited to share examples of their play and leisure experiences during the pandemic to the Play Observatory, a U.K. research project that ran from 2020 to 2022. These survey contributions provide portals through which to (re)consider children’s connection, participation and emergent becomings, attuning analytical attention towards children’s affective place-event entanglements during pandemic times. A posthumanist (re)telling of children’s Play Observatory contributions demonstrates how children were imbricated in constantly emergent affects, meanings, becomings and potentialities, that waxed and waned, intensified and dissipated, transcending the physical locus of lockdown. This paper contributes to the field by unsettling discourses of rupture, loss and deficit that have tended to dominate public and policy discussions of children’s experience of lockdowns. It contributes to ongoing, collective attempts to interrupt policy responses to the pandemic that centre individualising practices of curriculum ‘catch-up’ and fail to invite into the debate consideration of the potential richness of experiences and events encountered by the pandemic child outside of the strictures of normal schooling and curriculum.

A Longitudinal Study to Better Understand Child Protection Intervention for First Nations Children

This study brings forward new evidence regarding child protection (CP) intervention for First Nations children and contributes to a longitudinal understanding of their trajectories within CP services. It raises questions regarding the persisting, unmet needs of First Nations children, families, and communities by identifying the CP factors associated with a first decision to provide post-investigation intervention and a first decision to close a case following post-investigation intervention among First Nations children. Anonymized administrative data (2002–2014; n = 1340) were used to conduct multivariate analyses, including longitudinal analyses using Cox proportional hazards modeling. Among First Nations children, those who were very young, who were reported for serious risk of neglect, and whose situation included indicators of repeated individual or family contact with CP services were more likely to receive post-investigation intervention. Similarly, those who were very young, provided services for neglect or serious risk of neglect, and whose situation was investigated at least twice before intervention was provided were more likely to have a longer first episode of intervention. The longitudinal analyses also revealed that more than one in two First Nations children (51.7%) receiving post-investigation intervention experienced a placement in out-of-home care during their interaction with CP services. This study contributes to a better understanding of intervention for First Nations children in Canada. It highlights how First Nations children receiving CP intervention live in situations in which their needs persist over time and how current services do not appear able to respond to these situations adequately, supporting the move towards autonomous, Indigenous–led CP services.

First Nations Voices in Child Protection Decision Making: Changing the Frame

First Nations children in Australia remain vastly over-represented in the child protection (CP) and out-of-home care (OOHC) systems, and in juvenile detention and adult incarceration systems. To change this, we need to tackle the problem at the source; by maintaining our efforts for the implementation of First Nations rights, so that self-determination and cultural safety are embedded into the child protection system from a family’s first contact and by constantly identifying opportunities in the current system to keep our children safe. Using policy and research literature, this paper identifies the principal barrier to change as the continuing failure of settler governance to recognise the fundamental importance of First Nations rights, including the need to embed self-determination and a specific, First Nations cultural framework into the child protection system. The article also offers personal reflections on the essential role of self-determination in keeping our children safe, drawing on Aunty Glendra Stubbs’ experiences in community-based advocacy and support of families for nearly three decades. Her reflections are linked to the literature and First Nations advocacy that support the findings and opportunities for change proposed in this paper.

Multidisciplinary approach to the treatment of traumatic brain injury in children and rehabilitation

Оbjective ‒ to show the need for a comprehensive approach to the treatment and rehabilitation of patients with traumatic brain injury (TBI); the specifics of psychosomatic and psychophysiological complications in children as a result of trauma. Materials and methods. In period from 2019 to 2024 in the National Children's Specialized Hospital Okhmatdyt was applied a multidisciplinary approach in the treatment of TBI in 112 patients (children from 9 months to 16 years, the main group). In 22 (19.7 %) cases had isolated TBI and in 90 (80.3 %) had polytrauma. The peculiarity of treating children in the period 2022‒2024 is the presence of injuries as a result of hostilities. The mental state was assessed at the time of discharge and 3 months later using the State-Trait Anxiety Inventory (STAI) and the Kerdo index, and the Ronde index was used also. The control group was formed from 115 children who were treated until 2019, comparable in terms of age, type of injuries, length of stay in the hospital with patients of the main group.Results. The main complications in the psychoemotional, cognitive, psychosomatic, psychophysiological spheres are presented. The main general approaches in the treatment of brain injury and its consequences regarding the basic communicative work of a multidisciplinary team are shown: anesthesiologist, neurosurgeon, trauma surgeon, general surgeon, psychologist, neurologist, radiologist, doctor of functional diagnostics, rehabilitator. The features of anesthesiologist's work during sedation and anesthesia are described. A comparative assessment of the patient’s condition at discharge under 2019 (without of the principle of a multidisciplinary approach using) and in children who were treated with this method was performed. The dynamics of the various complications types presence in patients before 2019 and after was showed (with or without the multidisciplinary approach in treatment). Conclusions. A multidisciplinary approach to the treatment of both isolated TBI and polytrauma ensures timely diagnosis of psychological, psychosomatic, and psychophysiological disorders, and allows the involvement of appropriate specialists who carry out correction and rehabilitation. All this improves the quality of treatment and reduces the frequency of complications. Specialists who provide assistance to children with trauma should know the age-based foundations of child psychology in order to timely involve a psychologist in diagnosis and treatment at the stages of traumatic injury. Communication in the work between specialists makes it possible to pay attention to the peculiarities of the traumatic process, the complications that arise and to carry out correction and necessary rehabilitation in a timely manner. The most pronounced psychological and psychophysical complications in the main group were among children who suffered as a result of military actions and cruel treatment. Three months after receiving the injury, asthenic syndrome remained in 29.5 % of patients of the main group, 24.5 % of patients of the control group. In the control group, there is a decrease in these symptoms, but to a lesser extent, it can be interpreted so that the psychologist's recommendations were not taken into account by the neurosurgeon (surgeon) and the psychologist was not always involved in the treatment process, or some recommendations were not followed by the parents at the outpatient stage after discharge.

Race and Ethnicity, Deprivation, and Infant Mortality in England, 2019-2022

England has one of the highest infant mortality rates in Europe. Much of the variation in infant mortality rates between races and ethnicities may be due to socioeconomic factors, but how deprivation and race and ethnicity are associated with infant mortality is unclear. To investigate the association of infant race and ethnicity with the infant mortality rate in England, adjusted for preterm birth and level of deprivation. This cohort study included children who died younger than 1 year of age, born at or after 22 weeks' gestation, occurring from April 1, 2019, to March 31, 2022, in England. Characteristics of the infant were derived from death notifications. The racial and ethnic groups were derived from National Health Service data and were reported by the parents and characterized using the Office of National Statistics classification: Asian or Asian British (Bangladeshi, Chinese, Indian, Pakistani, or any other Asian background), Black or Black British (African, Caribbean, or any other Black background), multiracial (White and Asian, White and Black African, White and Black Caribbean, or any other multiracial background), White or White British (British, Irish, any other White background, or Gypsy or Irish Traveler), and other (Arab or any other racial or ethnic group). Risk of death for all racial and ethnic groups and relative risk of death compared with the reference group (White) were calcuated. Analyses were repeated, adjusting for deprivation, gestational age of infants, and region of England. A total of 5621 infants who died younger than 1 year of age were reported to the National Child Mortality Database. A total of 2842 of 5130 infants (55.4%) were male; the median gestational age was 33 weeks (IQR, 25-38 weeks); of 5149 infants, 927 (18.0%) were Asian, 448 (8.7%) were Black, 3318 (64.4%) were White, 343 (6.7%) were multiracial, and 113 (2.2%) were from other racial and ethnic groups; and the median deprivation score was 4 (IQR, 3-5). In the unadjusted analysis, the relative risk of death compared with White infants was higher for Black (1.93 [95% CI, 1.75-2.13]) and Asian (1.67 [95% CI, 1.55-1.80]) infants. The population attributable risk fraction for all mortality rates among infants who were not White was 12.0% (95% CI, 10.3%-13.8%) (unadjusted), 9.8% (95% CI, 8.0%-11.7%) (adjusted for deprivation), 7.7% (95% CI, 5.9%-9.5%) (adjusted for gestational age at birth), and 12.8% (95% CI, 11.0%-14.5%) (adjusted for region of England). This cohort study suggests that the proportion of infants who died before 1 year of age is associated with race and ethnicity, with a population attributable risk fraction of 12.0%. An overconservative adjustment for deprivation did not explain the overall patterns seen. Approximately half the population attributable risk fraction may be due to increased risk of preterm birth in Asian and Black communities. Work is needed to identify what can be done to reduce this incidence of infant mortality.

The Mental Health of First Nations Children in Manitoba: A Population-Based Retrospective Cohort Study Using Linked Administrative Data: La santé mentale des enfants des Premières Nations au Manitoba : une étude de cohorte rétrospective dans la population, à l'aide de données administratives liées.

First Nations children face a greater risk of experiencing mental disorders than other children from the general population because of family and societal factors, yet there is little research examining their mental health. This study compares diagnosed mental disorders and suicidal behaviours of First Nations children living on-reserve and off-reserve to all other children living in Manitoba. The research team, which included First Nations and non-First Nations researchers, utilized population-based administrative data that linked de-identified individual-level records from the 2016 First Nations Research File to health and social information for children living in Manitoba. Adjusted rates and rate ratios of mental disorders and suicide behaviours were calculated using a generalized linear modelling approach to compare First Nations children (n = 40,574) and all other children (n = 197,109) and comparing First Nations children living on- and off-reserve. Compared with all other children, First Nations children had a higher prevalence of schizophrenia (adjusted rate ratio (aRR): 4.42, 95% confidence interval (CI), 3.36 to 5.82), attention-deficit hyperactivity disorder (ADHD; aRR: 1.21, 95% CI, 1.09 to 1.33), substance use disorders (aRR: 5.19; 95% CI, 4.25 to 6.33), hospitalizations for suicide attempts (aRR: 6.96; 95% CI, 4.36 to 11.13) and suicide deaths (aRR: 10.63; 95% CI, 7.08 to 15.95). The prevalence of ADHD and mood/anxiety disorders was significantly higher for First Nations children living off-reserve compared with on-reserve; in contrast, hospitalization rates for suicide attempts were twice as high on-reserve than off-reserve. When the comparison cohort was restricted to only other children in low-income areas, a higher prevalence of almost all disorders remained for First Nations children. Large disparities were found in mental health indicators between First Nations children and other children in Manitoba, demonstrating that considerable work is required to improve the mental well-being of First Nations children. Equitable access to culturally safe services is urgently needed and these services should be self-determined, planned, and implemented by First Nations people.

A 6-year retrospective study of clinical features, microbiology, and genomics of Shiga toxin-producing Escherichia coli in children who presented to a tertiary referral hospital in Costa Rica.

Shiga-toxin-producing Escherichia coli (STEC) is associated with diarrhea and hemolytic uremic syndrome (HUS). STEC infections in Costa Rica are rarely reported in children. We gathered all the records of STEC infections in children documented at the National Children's Hospital, a tertiary referral hospital, from 2015 to 2020. Clinical, microbiological, and genomic information were analyzed and summarized. A total of 3,768 diarrheal episodes were reviewed. Among them, 31 STEC were characterized (29 fecal, 1 urine, and 1 bloodstream infection). The prevalence of diarrheal disease due to STEC was estimated at 0.8% (n = 29/3,768), and HUS development was 6.4% (n = 2/31). The stx1 gene was found in 77% (n = 24/31) of STEC strains. In silico genomic predictions revealed a predominant prevalence of serotype O118/O152:H2, accompanied by a cluster exhibiting allele differences ranging from 33 to 8, using a core-genome multilocus sequence typing (cgMLST) approach. This is the first study using a genomic approach for STEC infections in Costa Rica.IMPORTANCEThis study provides a comprehensive description of clinical, microbiological, genomic, and demographic data from patients who attended the only pediatric hospital in Costa Rica with Shiga-toxin-producing Escherichia coli (STEC) infections. Despite the low prevalence of STEC infections, we found a predominant serotype O118/O152:H2, highlighting the pivotal role of genomics in understanding the epidemiology of public health threats such as STEC. Employing a genomic approach for this pathogen for the first time in Costa Rica, we identified a higher prevalence of STEC in children under 2 years old, especially those with gastrointestinal comorbidities, residing in densely populated regions. Limitations such as potential geographic bias and lack of strains due to direct molecular diagnostics are acknowledged, emphasizing the need for continued surveillance to uncover the true extent of circulating serotypes and potential outbreaks in Costa Rica.

What role should schools play in the prevention of disordered eating in children and young people?

Whilst clinical eating disorders are relatively uncommon in children and young people, a much larger proportion are thought to experience subclinical difficulties with eating, termed ‘disordered eating’. Given that the issue is so widespread and many young people experiencing disordered eating do not meet the criteria for specialist eating disorder services, schools have a responsibility to work systemically to reduce the prevalence of these difficulties. Educators may be able to use some of the risk factors for disordered eating, including body dissatisfaction, parental pressure to lose weight, peer influence and internalisation of food rules, to inform preventative strategies. These strategies may include, but not be limited to, implementing curriculum changes such as teaching about body image and nutrition education in developmentally appropriate ways, as well as considering whole-school policy changes such as specifying weight-related victimisation in the school’s anti-bullying policy and deliberating the school’s involvement in national child weighing schemes. Taken together, schools have the potential to play a critical role in reducing disordered eating in children and young people. Educational psychologists are well-positioned to raise educators’ awareness of disordered eating and support senior leadership teams implement these preventative strategies in an evidence-informed way as well as considering the role disordered eating might play in their own casework.

Implementasi Program Tahfidzul Qur’anboarding School dalam Pembetukan Karakter Religius Peserta Didik di SMP-Qu Cahaya Al-Qur’an Padang Panjang

The occurrence of a multi-dimensional crisis, the mentality of the nation's children is bad, the decline in dignity is one of the importance of religious character education. To internalize the values of religious character to students, it is necessary to optimize education, one of which is character building through tahfidzul qur'an. character according to the Qur'an. This study aims to describe the program, methods and characters born from the tahfidz program. This research was conducted with a qualitative approach, while the data collection techniques used were the results of observations, interviews and documentation. Several results were obtained related to several Tahfidz programs implemented, namely daily, weekly, mid-semester and semester programs. Then the Qur'an Intensive (IQ) and at the end of the semester a Tasmi 'Akbar was held. Finally, the Mukhayyam Al-Qur'an program is held for two days after students return from school holidays with the aim of reviving children's memorization. To facilitate the memorization of the Qur'an, various methods were applied, namely: the Tiqrar, Talaqqi, Tasmi 'Tsuna'i, and Rabath methods. The religious characters that are implemented from tahfidzu that can be seen are honest, disciplined, patient, diligent, spontaneous without being asked, independent, and istiqomah in carrying out religious orders. The conclusion is that memorizing the Qur'an with a good and measurable program, then using the right method, will be able to shape the religious character of the students or the perpetrators.

Pitutur: Children's Song by Ki Hadisukatno as an Alternative for Forming the Nation's Children's Character

Pitutur: Children's Song by Ki Hadisukatno as an Alternative for Forming the Nation's Children's Character

Association of child weight with attendance at a healthy lifestyle service among women with obesity during pregnancy.

Women with obesity during pregnancy are at increased risk of excessive gestational weight gain (GWG) and other maternal and infant adverse outcomes, which all potentially increase childhood obesity. This study explored infant weight outcomes for women with a body mass index (BMI) ≥ 35 kg/m² who were offered an antenatal healthy lifestyle service. A retrospective cohort study, including linking data from two separate health care Trusts, was undertaken. Data werecollected from maternity records for women with a BMI ≥ 35 kg/m2 referred to an antenatal healthy lifestyle service from 2009 to 2015. The respective child's weight outcome data was additionally collected from health and National Child Measurement Programme records. Univariate logistic regression determined the odds of childhood overweight, obesity and severe obesity according to attendance at the antenatal healthy lifestyle service, GWG and sociodemographic characteristics. Factors significant (p < 0.05) within the univariate analysis were entered into multiple logistic regression models. Among women with a BMI ≥ 35 kg/m², 30.4% of their children were obese at school entry and 13.3% severely obese. Healthy lifestyle service attendance was not associated with childhood overweight or obesity at any point within the univariate analysis. At school age multiple regression analysis showed the odds of overweight and obesity increased with excessive GWG and the odds of obesity decreased with a parent in a professional occupation, additionally having a mother who smoked in pregnancy increased severe obesity. Women should be supported to optimise their BMI before pregnancy. Additionally, rather than exclusively focusing on changing an individual's behaviour, future interventions should consider external influences such as the woman's family, friendsand sociodemographic background.

Hyperincarceration and human rights abuses of First Nations children in juvenile detention in Queensland and the Northern Territory

ABSTRACT Hyperincarceration of First Nations peoples (both children in juvenile detention and adults in prisons) is a feature common to British settler colonial states. This article focuses on hyperincarceration of one population sub-group in one settler colonial state: children in Australian juvenile detention facilities. The treatment of First Nations children in Australian juvenile detention violates a number of Treaty obligations to which Australia has voluntarily committed. The article will focus on the treatment in two Australian jurisdictions – the Northern Territory and Queensland – where there have been high-profile instances of mistreatment that have garnered international and national attention and criticism. The treatment in these jurisdictions demonstrates the inconsistency between the international human rights law requirements and current legislation and policy. It argues that mistreatment that violates human rights law is directly contributed to by the hyperincarceration of First Nations children in juvenile detention, which is on a worsening trajectory.

Maternal and neonatal health outcomes for First Nations Australian women and children: A retrospective cohort study in a Western Sydney metropolitan tertiary referral centre.

To analyse key pregnancy and birth outcomes for First Nations women and children at a Western Sydney metropolitan tertiary referral centre. The birth and health-determining characteristics of 470 First Nations infants born at Nepean Hospital in 2018 and their mothers were included in a retrospective audit and compared with a contemporaneous control group of 470 infants and their mothers. Mothers of First Nations infants had significantly higher rates of socioeconomic disadvantage (P < 0.001), psychosocial vulnerability (P < 0.007), mental illness (P < 0.001), teenage pregnancy (P < 0.001), smoking (45.6% vs. 19.4%, P < 0.001) and drug and alcohol use than control mothers (P < 0.001, P < 0.048). First Nations peoples did not have increased rates of maternal morbidity, nor any difference in rates of Caesarean section, resuscitation at birth, NICU admission, preterm birth or low birth weight in multivariable analysis. However, multivariable analysis demonstrated significant associations between low birth weight and maternal smoking (P < 0.001), hypertension (P < 0.01) and drug use (P < 0.01). Despite challenges facing First Nations mothers and infants, our study found no significant difference in maternal morbidity nor adverse birth outcomes for First Nations infants. The study occurred in the context of culturally specific, First Nations-led antenatal and infant services. Future studies should further investigate relationships between participation in these services and health outcomes. This could identify strengths and areas for improvement in current services, with the goal of further improving outcomes for First Nations peoples through targeted health services that address their psychosocial vulnerabilities and support women to make healthy choices during pregnancy.

Epidermolysis Bullosa: Practical Clinical Tips From the Field.

Epidermolysis bullosa (EB) is a rare genetic condition characterized by fragile skin caused by impaired adhesion between the dermis and epidermis. EB is present at or near birth. There is no cure and treatments are supportive. Children with EB are at elevated risk of squamous cell cancer. Under ideal circumstances, EB patients benefit from interdisciplinary care teams who can offer state-of-the-art treatments. In reality and particularly in less-developed nations, care can be limited.In all cases, families dealing with a member with EB face great challenges in caregiving, much of which is managed at home, and incur great financial expenses for dressings, equipment, transportation, and out-of-pocket expenses. While research groups are working to find a cure for EB, clinicians working with EB patients around the worldhave found practical and relatively inexpensive tips to make life easier for people with EB. NoBabyBlisters.org, a nonprofit organization actively supplying monthly medical supplies for EB children on five continents and working on EB research, has innovated, developed, collected, and now offers here seven such practical and actionable items learned from its experience in the real world assisting children in less-developed nations, typically with hot climates. These are based on real-world clinical experience dealing with a complex disorder under challenging circumstances. The goal of this short paper is to provide advice to EB caregivers and their loved ones that may make things easier and enhance quality of life, including blister and pain reduction.

An Analysis of the Effect of Streaming on Civic Participation Through a Causal Hidden Markov Model

We examine the effect of streaming based on ability levels on individuals’ civic participation throughout their adult life. The hypothesis we test is that ability grouping influences individuals’ general self-concept and, consequently, their civic participation choices across the life course. We employ data from the British National Child Development Study, which follows all UK citizens born during a certain week in 1958. Six binary variables observed at 33, 42, and 51 years of age are considered to measure civic participation. Our approach defines causal estimands with multiple treatments referring to the evolution of civic engagement over time in terms of potential versions of a sequence of latent variables assumed to follow a Markov chain with initial and transition probabilities depending on posttreatment time-varying covariates. The model also addresses partially or entirely missing data on one or more indicators at a given time occasion and missing posttreatment covariate values using dummy indicators. The model is estimated by maximizing a weighted log-likelihood function with weights corresponding to the inverse probability of the received treatment obtained from a multinomial logit model based on pretreatment covariates. Our results show that ability grouping affects the civic participation of high-ability individuals when they are 33 years old with respect to participation in general elections.

Is the current therapeutic dosage of nadroparin adequate for neonates and infants under 8 months with thromboembolic disease? a population pharmacokinetic study from a national children's medical center.

Objectives: Nadroparin, a low-molecular-weight-heparin is commonly used off-label in neonates and infants for thromboembolic events prevention. However, the recommended dosing regimen often fails to achieve therapeutic target ranges. This study aimed to develop a population pharmacokinetic (PK) model of nadroparin to determine an appropriate dosing regimen for neonates and infants less than 8 months. Methods: A retrospective chart review was conducted on patients treated with nadroparin at Children's Hospital of Fudan University between July 2021 and December 2023. A population PK model was developed using anti-Xa levels, and its predictive performance was evaluated internally. Monte Carlo simulations were performed to design an initial dosing schedule targeting anti-Xa levels between 0.5 and 1IU/mL. Results: A total of 40 neonates and infants aged less than 8 months with gestational age ranging from 25 to 41 weeks treated with nadroparin were enrolled in the study for analysis. A one-compartment PK model with first order absorption and elimination was adequately fitted to the data. Creatinine clearance was identified as a significant factor contributing to inter-individual variability in clearance. The typical population parameter estimates of clearance, distribution volume and absorption rate in this population were 0.211L/h, 1.55L and 0.495h-1, respectively. Our findings suggest that current therapeutic doses of nadroparin (150-200IU/kg q12h) may result in subtherapeutic exposure, thus higher doses might be required. Conclusion: The present study offers the first estimation of PK parameters for nadroparin in preterm or term neonates and infants less than 8 months utilizing the model. Our findings have potential implications for recommending initial personalized dosages, particularly among patient populations exhibiting similar characteristics.