Purpose This systematic review aims to identify factors that influence parents’ decisions regarding pediatric diagnostic and predictive genetic testing (DT/PT). Factors are integrated into a conceptual model of decision-making. Implications for genetic counseling, research, and ethics are derived. Methods PubMed, PsychInfo, WebofScience and references of related reviews were searched for original publications between 2000 and 2023. Extracted factors were categorized into an existing model. Results Of 5843 publications, 56 met inclusion criteria. The included studies differentiate between DT, traditional, and expanded (...) PT and describe factors impacting parental decisions on both to have the child genetically tested and to be informed about additional findings. Factors included: 1. benefits/hopes, 2. worries/concerns, 3. values and beliefs, 4. individual circumstances, and 5. emotional states. Conclusion Our work extends an existing empirical decision model of family decisions about genome sequencing to genetic testing in pediatrics in general, adding the categories “individual circumstances” and “emotional states”. The factors can be further integrated into the Health Belief Model; the importance of emotional states is reflected in dual-process theories, such as Fuzzy Trace Theory. Research is required on emotional states, differences between DT and PT, parents’ decisions about result disclosure, and dyadic variables as decision-making predictors. (shrink)

Techniques from behavioral economics—nudges—may help physicians increase pediatric vaccine compliance, but critics have objected that nudges can undermine autonomy. Since autonomy is a centrally important value in healthcare decision-making contexts, it counts against pediatric vaccination nudges if they undermine parental autonomy. Advocates for healthcare nudges have resisted the charge that nudges undermine autonomy, and the recent bioethics literature illustrates the current intractability of this debate. This article rejects a principle to which parties on both sides of this debate sometimes seem (...) committed: that nudges are morally permissible only if they are consistent with autonomy. Instead, I argue that, at least in the case of pediatric vaccination, some autonomy-undermining nudges may be morally justified. This is because parental autonomy in pediatric decision-making is not as morally valuable as the autonomy of adult patients, and because the interests of both the vaccinated child and other members of the community can sometimes be weighty enough to justify autonomy-infringing pediatric vaccination nudges. This article concludes with a set of worries about the effect of pediatric vaccination nudges on parent-physician relationships, and it calls on the American Academy of Pediatrics to draw on scientific and bioethics research to develop guidelines for the use of nudges in pediatric practice and, in particular, for the use of pediatric vaccination nudges. (shrink)

What process ought to guide decision making for pediatric patients? The prevailing view is that decision making should be informed and guided by the best interest of the child. A widely discussed structural model proposed by Buchanan and Brock focuses on parents as surrogate decision makers and examines best interests as guiding and/or intervention principles. Working from two recent articles by Ross on “constrained parental autonomy” in pediatric decision making (which is grounded in the Buchanan and Brock model), I discuss (...) (supportively) features of Ross’s effort visa-vis the best interest standard. I argue that any pediatric decision-making model that brackets or formally limits an engagement with the child patient assumes too much. Further, any model that under appreciates the place of parents and their autonomy, and the dynamic parent-child relationship, misses an opportunity to broaden the clinical encounter by considering questions of justice for the child (Rawls) and within a family (Ross). In this context, I focus on the child’s emerging and ongoing emotional and intellectual development and autonomy—their capabilities and identifying primary goods. (shrink)

A precise overview of pediatric emergencies would require taxological considerations around the differences between strictly neurological factors, as modulated both via neuroanatomical differentiation in the context of normal vs. abnormal biological development, and underlying neurofunctional mechanisms, and the connection with such processes with the neuromodulated activation of digestive processes. Furthermore, an important distinction between nephrological considerations and urological considerations is necessary, more specifically, by focusing on the treatment of diseases affecting the kidneys and their ability to function in the first (...) case, and on the treatment of diseases affecting the urinary tract in the latter. In this paper, we will present a general overview of the most important aspects of each category, starting with the brief description of neurological emergencies as indicating a general (system-based vs. localized) deterioration of mental capacity, with added possible partial or full loss of cognitive capacities and/or impaired perceptual modalities and consciousness, with or without response to stimuli. (shrink)

American writer William Carlos Williams (1883-1963 studied medicine at the University of Pennsylvania. Following the completion of his fellowships, he traveled to Germany to specialize in pediatrics. Upon returning to America, he established an independent medical practice. The experiences Williams acquired through his medical career provided a valuable source for his literary work, which focused on ordinary people and everyday situations. Williams endeavored to create a form of literature that accurately represented the American experience and he innovatively utilized vernacular (...) language. His literary output encompassed poetry, short stories, novels, essays, and plays, though he is primarily recognized as a poet. Among his significant works are Kora in Hell (1920), Spring and All (1923), Pictures from Brueghel and Other Poems (1962), the five-volume Paterson (1963, 1992), and Imaginations (1970). 'The Use of Force,' presented in translation here, originally appeared in the short story collection Life along the Passaic River. -/- [In Dutch: De Amerikaanse schrijver William Carlos Williams (1883-1963) studeerde geneeskunde aan de Universiteit van Pennsylvania. Na zijn coschappen ging hij naar Duitsland om zich in de kindergeneeskunde te specialiseren. Eenmaal terug in Amerika vestigde hij zich als zelfstandig arts. De ervaringen die Williams in zijn artsenpraktijk opdeed, vormden een dankbare bron voor zijn literaire werk waarin gewone mensen en alledaagse situaties centraal staan. Williams streefde naar een vorm van literatuur die recht deed aan de Amerikaanse ervaring en maakte op inventieve wijze gebruik van de taal van de straat. Hij schreef gedichten, verhalen, romans, essays en toneelstukken, maar staat voornamelijk bekend als dichter. Tot zijn belangrijkste werken horen Kora in Hell (1920), Spring and All (1923), Pictures from Brueghel and Other Poems (1962), het vijfdelige Paterson (1963, 1992) en Imaginations (1970). 'Het gebruik van geweld' ('The Use of Force'), dat hier is afgedrukt, komt oorspronkelijk uil de verhalenbundel Life along the Passaic River.]. (shrink)

In der Medizin gehören Kinder neben Ausländern, Behinderten und psychiatrisch Erkrankten zu den besonders vulnerablen Patientengruppen. Im Folgenden soll die Frage nach der Würde der Kinder in medizinethischer Hinsicht behandelt werden. Dazu werden drei Thesen erläutert und begründet: (1.) das Prinzip der Menschenwürde kann nicht ganz außer Acht gelassen werden, wenn Kinder als Patienten in medizinethischer Hinsicht thematisiert werden; (2.) das Prinzip der Menschenwürde wird in der Medizinethik nicht schon vollständig durch die medizinethischen Prinzipien der Patientenautonomie und der Fürsorge für (...) die Patienten abgedeckt; (3.) die habituelle und bewusste Achtung der Würde des Menschen bringt immer wieder neue und bisher noch wenig beachtete Aspekte des medizinischen, therapeutischen und pflegerischen Umgangs mit Patienten und Kindern als Patienten ans Licht. Diskussionen über den Gehalt des Prinzips der Menschenwürde gehen nicht nur in der Medizinethik, sondern auch in anderen Bereichen der angewandten Ethik in der Regel von Erwachsenen aus. Erwachsene gelten als die paradigmatischen Subjekte und Objekte der Wahrnehmung, Zuschreibung und Anerkennung von Würde. Meistens denkt man nur an Erwachsene, wenn man darauf besteht, dass die menschliche Würde (1.) vom moralischen und rechtlichen Standpunkt aus grundsätzlich zu achten ist, (2.) unter bestimmten psychologischen, sozialen und politischen Umständen gefährdet ist und (3.) in bestimmten Handlungssituationen mit anderen ethischen Forderungen in Konflikt geraten kann. Bei Erwachsenen ist es relativ leicht, ethische Intuitionen darüber, ob in bestimmten medizinischen Handlungssituationen die Würde eines Menschen verletzt wird, zu formulieren und zu begründen. Denn bei Erwachsenen steht die Würdeverletzung in einem engen Zusammenhang mit der Berücksichtigung verschiedener ethischer Forderungen: (1.) nach Achtung der willentlichen Selbstbestimmung und der normativen Autonomie, (2.) nach Berücksichtigung von persönlichen Lebenszielen und Wertpräferenzen, (3.) nach Bewahrung von mutmaßlichen Lebenschancen (4.) nach Berücksichtigung personaler Bedürfnisse nach Anerkennung, Gegenseitigkeit, Intimität, Integrität, etc. sowie (5.) nach Wahrnehmung und Anerkennung der unverwechselbaren Individualität des Anderen. Die Angemessenheit und Erfüllbarkeit dieser ethischen Forderungen hängt nun aber von soziologischen und psychologischen Gegebenheiten ab, die bei Kindern je nach Altersgruppe und individueller Ausprägung nicht in gleicher Weise gegeben sind. Deswegen soll hier gezeigt werden, welche besondere und zusätzliche Rolle eine medizinethische Erinnerung an die Würde der Kinder im Spannungsfeld zwischen Autonomie und Fürsorge spielen kann. Dabei zeigt sich, dass es gerade die Achtung vor der Würde des Kindes ist, die uns überhaupt erst ermöglicht, das Kind als Kind und damit als ein eigenständiges Subjekt und als ein besonderes menschliches Wesen zu entdecken. (shrink)

The current rise of neurodevelopmental disorders poses a critical need to detect risk early in order to rapidly intervene. One of the tools pediatricians use to track development is the standard growth chart. The growth charts are somewhat limited in predicting possible neurodevelopmental issues. They rely on linear models and assumptions of normality for physical growth data – obscuring key statistical information about possible neurodevelopmental risk in growth data that actually has accelerated, non-linear rates-of-change and variability encompassing skewed distributions. Here, (...) we use new analytics to profile growth data from 36 newborn babies that were tracked longitudinally for 5 months. By switching to incremental (velocity-based) growth charts and combining these dynamic changes with underlying fluctuations in motor performance – as the transition from spontaneous random noise to a systematic signal – we demonstrate a method to detect very early stunting in the development of voluntary neuromotor control and to flag risk of neurodevelopmental derail. (shrink)

Background Bronchial asthma is one of the most common chronic conditions among children. Despite the improvement in asthma treatment regimens, its prevalence and related morbidity are increasing, especially among underserved, minority children. There are barriers in the management of asthma, which may impact the quality of outcomes. The goal of this study is to explore these barriers. Methods A cross-sectional study was conducted on interview data collected through 2019 from mothers of children (aged 6 - 12 years) with asthma visiting, (...) for convenience, a public shopping mall. The interviewees were randomly selected, because they met the inclusion criteria. Participants were considered if the mother answered “yes” to the following questions: Has your child had physician-diagnosed asthma? Is your child currently taking asthma medications of asthma? Two community nurses conducted the interviews. Data was obtained using administrative questionnaires. Data were analyzed using SPSS version 21.0 (IBM Inc., Chicago, IL, USA). Descriptive statistics of percentage, mean, frequency and standard deviation were applied for categorical and continuous variables. Results Three hundred mothers participated in this study. Their average age was 36.8 years, 55% were housekeepers by profession, and 34% had obtained less than high school education. The majority of children (61%) were males, 45% had moderate asthma, and 42% had mild asthma. The most frequent types of barriers identified by parents were environmental factors (67.7%), followed by health care providers (63%), the health care system (48%), and patient or family characteristics (43%). Mothers were specifically concerned about the use, safety, and long-term complications of medications, the impact of exercise limitation on their child’s quality of life, and their own quality of life. Conclusion This study showed several barriers against asthma care in Saudi Arabia, which mainly related to environmental or personal characteristics. This highlights the need to enhance current policies within the health care system in Saudi Arabia to overcome these barriers. (shrink)

Systemic juvenile idiopathic arthritis is classified as an autoimmune entity and a subtype of juvenile idiopathic arthritis, although it has many features of autoinflammatory-type of diseases. This review article will elaborate on the disease’s pathogenesis and its proposed relation to autoinflammatory diseases including defective innate immunity and phagocytosis response leading excessive cytokine release. It also explains the disease’s epidemiology, clinical phenotype, diagnostic challenges, complications and current advancements in the treatment of systemic juvenile idiopathic arthritis, such as IL-1 and IL-6 antagonists (...) and their impact on the disease trajectory. Care of patients with systemic juvenile idiopathic arthritis requires a comprehensive multidisciplinary team to optimize the care and avoid complications of the disease itself such as growth impairment, macrophage activation syndrome or the complications of immunosuppressant and immunomodulatory treatments. (shrink)

Coronavirus disease 2019 can lead to respiratory failure. Some patients require extracorporeal membrane oxygenation support. During the current pandemic, health care resources in some cities have been overwhelmed, and doctors have faced complex decisions about resource allocation. We present a case in which a pediatric hospital caring for both children and adults seeks to establish guidelines for the use of extracorporeal membrane oxygenation if there are not enough resources to treat every patient. Experts in critical care, end-of-life care, bioethics, and (...) health policy discuss if age should guide rationing decisions. (shrink)

Vaccine refusal forces us to confront tensions between many values, including scientific expertise, parental rights, children’s best interests, social responsibility, public trust, and community health. Recent outbreaks of vaccine-preventable and emerging infectious diseases have amplified these issues. The prospect of a coronavirus disease 2019 vaccine signals even more friction on the horizon. In this contentious sociopolitical landscape, it is therefore more important than ever for clinicians to identify ethically justified responses to vaccine refusal.

Background: Respiratory syncytial virus (RSV) is one of the major viruses that cause respiratory infections in all generations, not only in neonates and infants. There is a limited number of reports on serological epidemiology of RSV subgroups A and B. Neutralizing test (NT) antibody reflects protective immunity but bothersome. Sero-epidemiological study should be performed using practical NT method. Methods: Two wild-type viruses subgroups A and B, isolated in 2013, and the Long strain was used as the challenge viruses. NT antibody (...) with 100% inhibition of cytopathic effect (CPE) was examined. A total of 91 serum samples obtained from 0 to 12 years subjects without RSV infection who visited our hospital with some health problems and 121 sera obtained from healthy subjects in different age groups were used. Serological epidemiology of subgroups A and B was investigated in this study using new NT methods. Results: 1) A simple and practical NT method was developed. 2) The NT antibody titer was lowest in <1 year of age (5 × 21.70 ± 2.03 against subgroup A and 5 × 20.85 ± 1.31 against subgroup B) and increased in 3 years of age or older, and high antibody titers were maintained during school age. 3) A slight difference was observed in the NT antibody titers against subgroups A and Bin young children <3 years, but not after 3 years of age, reflecting the repeated infections. 4) Specific IgG antibody against RSV was measured. The IgG EIA values decreased with age. No association was observed between IgG EIA and NT titers. Conclusions: A simple NT assay method was developed in the present study. By the age of 3 years, high NT antibody titers were observed and maintained until 12 years. The IgG (EIA) values decreased with age. No association was observed between IgG (EIA) and NT titers. (shrink)

We argue that the universal recommendations against “off-label” pediatric use of approved COVID-19 issued by the FDA, CDC, and AAP are overbroad. Especially for higher-risk children, vaccination can be ethically justified even before FDA authorization or approval – and similar reasoning is relevant for even younger patients. Legal risks can also be managed, although the FDA, CDC, and Department of Health and Human Services (HHS) should move quickly to provide clarity.