Controversies surrounding the determination of death by neurologic criteria (DNC), also known as brain death, have become increasingly common over the last decade, occasionally leading to parental refusal of all or part of an evaluation or declaration of DNC. We performed a prospective, crosssectional study of pediatric neurologists and intensivists who participate in professional listservs to ascertain perspectives and practices concerning the evaluation of DNC, specifically on obtaining permission for evaluations and managing refusals. Of the 334 respondents who had (...) performed an evaluation for DNC, 35 percent reported they had experienced at least one parental refusal, and 64.4 percent reported that they did not seek permission to perform an evaluation. Pediatric neurologists, careproviders who had less experience doing evaluations, and careproviders who had experienced parental refusal of an evaluation were more likely to obtain permission from parents. Most (80.8 percent) of respondents reported that their institution had a DNC policy. We found variability in many aspects of DNC evaluations and declarations, as well as the handling of refusals. Lack of consistency may make it more difficult for careproviders and families. Greater understanding of parental refusal of DNC evaluation is essential to inform efforts to increase consistency. (shrink)

IntroductionCerebral visual impairment results from damage to cerebral visual processing structures. It is the most common cause of pediatric visual impairment in developed countries and rising in prevalence in developing nations. There is currently limited understanding on how neurologic, developmental, and ophthalmic factors predict outcome for pediatric CVI.MethodA retrospective manual chart review of pediatric CVI patients seen at the tertiary pediatric hospital neurology and neuro-ophthalmology service between 2010 and 2019 was conducted. Patients were stratified into (...) severity groups, and followed over time to identify outcome predictors. Collected baseline characteristics included perinatal, genetic, developmental, and neurologic history, along with neuroimaging and fundoscopic findings on examination. Longitudinal data collected included age, seizure control, and type of therapy received. Linear mixed-effect models were used for longitudinal CVI grade outcome analysis.ResultsA total of 249 individuals spanning 779 patient visits were identified. Mean age at diagnosis was 18.8 ± 16.8 months. About 64.3% were born at term age. Perinatal history revealed hypoxic ischemic encephalopathy in 16.5%, intraventricular hemorrhage in 11.6%, and seizures in 21.7%. At presentation, 60.3% had a diagnosis of cerebral palsy and 84.7% had developmental delay. Among all subjects, 78.6% had epilepsy; 33.8% had an epileptic encephalopathy, with spasms/hypsarrhythmia being most common. Abnormal neuroimaging was present in 93.8%. Genetic anomalies were present in 26.9%. Baseline visual examination revealed no blink-to-light in 24.5%; only BTL in 34.5%, fixation/tracking in 26.5%, and optokinetic drum follow in 14.4%. Longitudinal data analysis showed that perinatal history of HIE, a positive epilepsy history, using multiple epilepsy medications, cerebral palsy, and abnormal fundoscopic findings were all negatively associated with CVI grade change over time. After controlling for significant confounders, receiving any type of therapy [early childhood intervention, physical and occupational therapy, refractive error correction or glasses] was significantly associated with longitudinal improvement in CVI grade compared to patients who did not receive any therapy, with glasses yielding the largest benefit.ConclusionThis study offers extensive insights into neurologic, developmental and ophthalmologic features in patients with moderate to severe CVI. In concordance with previous findings, aspects of perinatal history and epilepsy/seizure control may help inform severity and prognosis in the general neurology or ophthalmology clinic. Conversely, these aspects, as well as genetic and specific epilepsy traits may alert vision health care providers in the clinic to pursue visual evaluation in at-risk individuals. Longitudinal follow-up of CVI patients showed that interventional therapies demonstrated vision function improvement greater than no therapy and maturational development. (shrink)

Neuroimaging has provided insight into numerous neurological disorders in children, such as epilepsy and cerebral palsy. Many clinicians and investigators believe that neuroimaging holds great promise, especially in the areas of behavioral and cognitive disorders. However, concerns about the risks of various neuroimaging modalities and the potential for misinterpretation of imaging results are mounting. Imaging evaluations also raise questions about stigmatization, allocation of resources, and confidentiality. Children are particularly vulnerable in this milieu and require special attention with regards to safety (...) guidelines and modality adaptations. This article examines pediatric neuroimaging practice through an ethics lens. Most authors in the field of neuroethics focus on the future concerns of neuroimaging. In contrast, our paper examines ethical matters surrounding current clinical applications in the pediatric population. We first provide a brief overview of the neuroimaging technologies most commonly used in a pediatric clinical context and then discuss a variety of ethical issues arising from the use of these technologies. (shrink)

IntroductionDeep brain stimulation (DBS) is utilized to treat pediatric refractory dystonia and its use in pediatric patients is expected to grow. One important question concerns the impact of hope and unrealistic optimism on decision-making, especially in “last resort” intervention scenarios such as DBS for refractory conditions.ObjectiveThis study examined stakeholder experiences and perspectives on hope and unrealistic optimism in the context of decision-making about DBS for childhood dystonia and provides insights for clinicians seeking to implement effective communication strategies.Materials and (...) MethodsSemi-structured interviews with clinicians (n = 29) and caregivers (n = 44) were conducted, transcribed, and coded.ResultsUsing thematic content analysis, four major themes from clinician interviews and five major themes from caregiver interviews related to hopes and expectations were identified. Clinicians expressed concerns about caregiver false hopes (86%, 25/29) and desperation (68.9%, 20/29) in light of DBS being a last resort. As a result, 68.9% of clinicians (20/29) expressed that they intentionally tried to lower caregiver expectations about DBS outcomes. Clinicians also expressed concern that, on the flip side, unrealistic pessimism drives away some patients who might otherwise benefit from DBS (34.5%, 10/29). Caregivers viewed DBS as the last option that they had to try (61.3%, 27/44), and 73% of caregivers (32/44) viewed themselves as having high hopes but reasonable expectations. Fewer than half (43%, 19/44) expressed that they struggled setting outcome expectations due to the uncertainty of DBS, and 50% of post-DBS caregivers (14/28) expressed some negative feelings post treatment due to unmet expectations. 43% of caregivers (19/44) had experiences with clinicians who tried to set low expectations about the potential benefits of DBS.ConclusionThoughtful clinician-stakeholder discussion is needed to ensure realistic outcome expectations. (shrink)

Background Transcranial direct current stimulation (tDCS) is a brain stimulation technique currently being researched as an alternative or complimentary treatment for various neurological disorders. There is little knowledge about experiences of the participants of tDCS clinical research, especially from pediatric studies. Methods An interview study with typically developing minors (n = 19, mean age 13,66 years) participating in a tDCS study, and their parents (n = 18) was conducted to explore their views and experiences and inform the ethical analysis. (...) Results Children (10–13 years old) and adolescents (14–18 years old) reported good experiences with the stimulation. Next to financial incentives, main motives to participate in the study were curiosity and the possibility to help develop treatments for children affected by neurological disorders. They could also see a potential of using tDCS in a non-medical setting, especially regarding the provision of equal opportunity, e.g. in education. Parents also presented a positive attitude towards tDCS and their children participation in the basic research study. Nevertheless, their understanding of tDCS was rather poor. Even though many of them understood the techniques, they often did not see the link between the (current) lack of side effects and an absence of longitudinal studies. Parents were also cautious about using tDCS for non-medical/enhancement purposes. Conclusions The study findings show a need for more transparent information about the state of the art of tDCS, its function and what it might be able to offer, especially considering the good acceptability of tDCS. (shrink)

ObjectiveThe objective of this study was to validate the computerized Symbol Digit Modalities Test in a Swiss pediatric cohort, in comparing the Swiss sample to the Canadian norms. Secondly, we evaluated sex effects, age-effects, and test–retest reliability of the c-SDMT in comparison to values obtained for the paper and pencil version of the Symbol Digit Modalities Test.MethodsThis longitudinal observational study was conducted in a single-center setting at the University Children’s Hospital of Bern. Our cohort consisted of 86 children aged (...) from 8 to 16 years. The cohort included both healthy participants and patients hospitalized for a non-neurological disease. Forty eight participants were assessed during two testing sessions with the SDMT and the c-SDMT.ResultsTest–retest reliability was high in both tests. A reliable change index was calculated for the SDMT and the c-SDMT corrected for practice effects. While a significant age effect on information processing speed was observed, no such effect was found for sex. When data on the c-SDMT performance of the Swiss cohort was compared with that from a Canadian cohort, no significant difference was found for the mean time per trial in any age group. Norm values for age groups between 8 and 16 years in the Swiss cohort were established.ConclusionNorms for the c-SDMT between the Swiss and the Canadian cohort were comparable. The c-SDMT is a valid alternative to the SDMT. It is a feasible and easy to administer bedside tool due to high reliability and the lack of motor demands. (shrink)

This book provides a detailed account of intellectual, other neuropsychological and behavioral manifestations of general pediatric diseases. The conditions discussed include the whole range of pediatric diseases - genetic syndromes, other congenital conditions, metabolic, endocrine, gastrointestinal, infectious, immunologic, toxic, trauma, and neoplastic, as well as sensory disabilities including deafness and blindness. Although the book is not intended to discuss cognitive and behavioral manifestations of conditions usually considered to be primary neurological disease, some of those, including cerebral palsy, muscular (...) dystrophy, myotonic dystrophy and epilepsy, are included.Where possible, a. (shrink)

Thousands of youth suffering from acquired brain injury or other early-life neurological disease live, mature, and learn with only limited communication and interaction with their world. Such cognitively capable children are ideal candidates for brain-computer interfaces. While BCI systems are rapidly evolving, a fundamental gap exists between technological innovators and the patients and families who stand to benefit. Forays into translating BCI systems to children in recent years have revealed that kids can learn to operate simple BCI with proficiency akin (...) to adults. BCI could bring significant boons to the lives of many children with severe physical impairment, supporting their complex physical and social needs. However, children have been neglected in BCI research and a collaborative BCI research community is required to unite and push pediatric BCI development forward. To this end, the pediatric BCI Canada collaborative network was formed, under a unified goal to cooperatively drive forward pediatric BCI innovation and impact. This article reflects on the topics and discussions raised in the foundational BCI-CAN meeting held in Toronto, ON, Canada in November 2019 and suggests the next steps required to see BCI impact the lives of children with severe neurological disease and their families. (shrink)

BackgroundInformation processing speed is a marker for cognitive function. It is associated with neural maturation and increases during development. Traditionally, IPS is measured using paper and pencil tasks requiring fine motor skills. Such skills are often impaired in patients with neurological conditions. Therefore, an alternative that does not need motor dexterity is desirable. One option is the computerized symbol digit modalities test, which requires the patient to verbally associate numbers with symbols.MethodsEighty-six participants were examined, 38 healthy and 48 hospitalized for (...) a non-neurological disease. All participants performed the written SDMT, c-SDMT, and the Test of Non-verbal Intelligence Fourth Edition. Statistical analyses included a multivariate analysis of covariance for the effects of intelligence and hospitalization on the performance of the SDMT and c-SDMT. A repeated measures analysis of variance was used to compare performance across c-SDMT trials between inpatients and outpatients.ResultsThe MANCOVA showed that hospitalization had a significant effect on IPS when measured with the SDMT but not with the c-SDMT, while IQ had no effect on IPS. Age was the best predictor of performance of both tests. The repeated measures ANOVA revealed no significant difference in within-test performance between outpatient and inpatient participants in the c-SDMT.ConclusionPerformance of the c-SDMT is not confounded by hospitalization and gives within-test information. As a valid and reliable measure of IPS for children and adolescents, it is suitable for use in both inpatient and outpatient populations. (shrink)

BackgroundSocial cognition and competence are a key part of daily interactions and essential for satisfying relationships and well-being. Pediatric neurological and psychological conditions can affect social cognition and require assessment and remediation of social skills. To adequately approximate the complex and dynamic nature of real-world social interactions, innovative tools are needed. The aim of this study was to document the performance of adolescents on two versions of a serious video game presenting realistic, everyday, socio-moral conflicts, and to explore whether (...) their performance is associated with empathy or sense of presence, factors known to influence social cognition.MethodsParticipants first completed a pre-test measure of socio-moral reasoning based on three dilemmas from a previously validated computer task. Then, they either played an evaluative version or an adaptive version of a video game presenting nine social situations in which they made socio-moral decisions and provided justifications. In the evaluative version, participants’ audio justifications were recorded verbatim and coded manually to obtain a socio-moral reasoning maturity score. In the adaptive version, tailored feedback and social reinforcements were provided based on participant responses. An automatic coding algorithm developed using artificial intelligence was used to determine socio-moral maturity level in real-time and to provide a basis for the feedback and reinforcements in the game. All participants then completed a three-dilemma post-test assessment.ResultsThose who played the adaptive version showed improved SMR across the pre-test, in-game and post-test moral maturity scores, F = 9.81, pHF < 0.001, ϵ2 = 0.21, but those who played the Evaluative version did not. Socio-moral reasoning scores from both versions combined did not correlate with empathy or sense of presence during the game, though results neared significance. The study findings support preliminary validation of the game as a promising method for assessing and remediating social skills during adolescence. (shrink)

What is attention? How does it go wrong? Do attention deficits arise from genes or from the environment? Can we cure it with drugs or training? Are there disorders of attention other than deficit disorders? The past decade has seen a burgeoning of research on the subject of attention. This research has been facilitated by advances on several fronts: New methods are now available for viewing brain activity in real time, there is expanding information on the complexities of the biochemistry (...) of neural activity, individual genes can be isolated and their functions identified, analysis of the component processes included under the broad umbrella of "attention" has become increasingly sophisticated, and ingenious methods have been devised for measuring typical and atypical development of these processes, from infancy into childhood, and then into adulthood. In this book, Kim Cornish and John Wilding are concerned with attention and its development, both typical and atypical, particularly in disorders with a known genetic etiology or assumed genetic linkage. Tremendous advances across seemingly diverse disciplines - molecular genetics, pediatric neurology, child psychiatry, developmental cognitive neuroscience, and education - have culminated in a wealth of new methods for elucidating disorders at multiple levels, possibly paving the way for new treatment options. Cornish and Wilding use three specific-yet-interlinking levels of analysis: genetic blueprint, the developing brain, and the behavioral-cognitive outcomes, as the basis for charting the attention profiles of six well-documented neurodevelopmental disorders: ADHD, autism, fragile X syndrome, Down syndrome, Williams syndrome, and 22q11 deletion syndrome. Their overarching aim in this book is to provide the most authoritative and extensive account to date of disorder-specific attention profiles and their development from infancy through adolescence. (shrink)

What is attention? How does it go wrong? Do attention deficits arise from genes or from the environment? Can we cure it with drugs or training? Are there disorders of attention other than deficit disorders? The past decade has seen a burgeoning of research on the subject of attention. This research has been facilitated by advances on several fronts: New methods are now available for viewing brain activity in real time, there is expanding information on the complexities of the biochemistry (...) of neural activity, individual genes can be isolated and their functions identified, analysis of the component processes included under the broad umbrella of "attention" has become increasingly sophisticated, and ingenious methods have been devised for measuring typical and atypical development of these processes, from infancy into childhood, and then into adulthood. In this book, Kim Cornish and John Wilding are concerned with attention and its development, both typical and atypical, particularly in disorders with a known genetic etiology or assumed genetic linkage. Tremendous advances across seemingly diverse disciplines - molecular genetics, pediatric neurology, child psychiatry, developmental cognitive neuroscience, and education - have culminated in a wealth of new methods for elucidating disorders at multiple levels, possibly paving the way for new treatment options. Cornish and Wilding use three specific-yet-interlinking levels of analysis: genetic blueprint, the developing brain, and the behavioral-cognitive outcomes, as the basis for charting the attention profiles of six well-documented neurodevelopmental disorders: ADHD, autism, fragile X syndrome, Down syndrome, Williams syndrome, and 22q11 deletion syndrome. Their overarching aim in this book is to provide the most authoritative and extensive account to date of disorder-specific attention profiles and their development from infancy through adolescence. (shrink)

BackgroundThe diagnosis of Attention deficit hyperactivity disorder is primarily dependent on parents’ and teachers’ reports, while children’s own perspectives on their difficulties and strengths are often overlooked.GoalTo further increase our insight into children’s ability to reliably report about their ADHD-related symptoms, the current study examined the associations between children’s self-reports, parents’ and teachers’ reports, and standardized continuous performance test data. We also examined whether the addition of children’s perceptions of ADHD-symptoms to parents’ and teachers’ reports would be reflected by objective (...) and standardized data.MethodsThe study included 190 children with ADHD, aged 7–10 years, who were referred to a pediatric neurologic clinic. A retrospective analysis was conducted using records of a clinical database. Obtained data included children’s self-reports of their attention level and ADHD-related symptoms, parent, and teacher forms of the Conners ADHD rating scales, Child Behavior Checklist, Teacher’s Report Form, and CPT scores.ResultsChildren’s self-evaluations of their functioning were globally associated with their teachers’ and parents’ evaluations, but not uniquely. Children’s self-reports of ADHD symptoms were not uniquely linked to a specific CPT impairment index, but to a general likelihood of having an impaired CPT. The CPT performance successfully distinguished between the group of children who defined themselves as inattentive and those who did not.ConclusionPrimary school children with ADHD are able to identify their limitations and needs difficulties and that their perspectives should inform clinical practice and research. The clinical and ethical imperative of taking children’s perspectives into account during ADHD diagnosis and treatment is highlighted. (shrink)

This essay critiques the fiercely utilitarian allocation scheme of Cameron et al. Children have no hope of recovery if their lives are cut short based on administrative protocols that misrepresent the nature of their conditions. Unilateral futility judgements - especially those based on a false predicate - are discriminatory. When considering the best interests of children, we should see possibility in disability and not advance ill-informed utilitarianism.

Hemiparetic stroke in adulthood often results in the grouped movement pattern of the upper extremity flexion synergy thought to arise from an increased reliance on cortico-reticulospinal pathways due to a loss of lateral corticospinal projections. It is well-established that the flexion synergy induces reaching constraints in individuals with adult-onset hemiplegia. The expression of the flexion synergy in individuals with brain injuries onset earlier in the lifespan is currently unknown. An early unilateral brain injury occurring prior to six months post full-term (...) may preserve corticospinal projections which can be used for independent joint control and thus minimizing the expression of the flexion synergy. This study uses kinematics of a ballistic reaching task to evaluate the expression of the flexion synergy in individuals with pediatric-onset hemiplegia (PH) ages six to seventeen years. Fifteen individuals with brain injuries before birth (n = 8) and around full-term (n = 7) and nine age-matched controls with no known neurological impairment completed a set of reaches in an admittance controlled robotic device. Descending drive, and the possible expression of the upper extremity flexion snergy, was modulated by increasing shoulder abduction loading. Individuals with early PH achieved lower peak velocities when reaching with the paretic arm compared to controls however no differences in reaching distance were found between groups. Relative maintenance in reaching seen in individuals with early brain injuries highlights minimal expression of the flexion synergy. We interpret this conservation of independent control of the paretic shoulder and elbow as the use of more direct corticospinal projections instead of indirect cortico-reticulospinal pathways used in individuals with adult-onset hemiplegia. (shrink)

Given the widening gap between the number of individuals on transplant waiting lists and the availability of donated organs, as well as the recent plateau in donations based on neurological criteria, there has been a growing interest in expanding donation after circulatory determination of death. While the prevalence of this form of organ donation continues to increase, many thorny ethical issues remain, often creating moral distress in both clinicians and families. In this article, we address one of these issues, namely, (...) the challenges surrounding patient and surrogate informed consent for donation after circulatory determination of death. First we discuss several general concerns regarding consent related to this form of organ donation, and then we address additional issues that are unique to three different patient categories: adult patients with medical decision-making capacity or potential capacity, adult patients who lack capacity, and pediatric patients. (shrink)

Discrepancies between the Uniform Determination of Death Act (UDDA) and the adult and pediatric diagnostic guidelines for brain death (BD) (the “Guidelines”) have motivated proposals to revise the UDDA. A revision proposed by Lewis, Bonnie and Pope (the RUDDA), has received particular attention, the three novelties of which would be: (1) to specify the Guidelines as the legally recognized “medical standard,” (2) to exclude hypothalamic function from the category of “brain function,” and (3) to authorize physicians to conduct an (...) apnea test without consent and even over a proxy’s objection. One hundred seven experts in medicine, bioethics, philosophy, and law, spanning a wide variety of perspectives, have come together in agreement that while the UDDA needs revision, the RUDDA is not the way to do it. Specifically, (1) the Guidelines have a non-negligible risk of false-positive error, (2) hypothalamic function is more relevant to the organism as a whole than any brainstem reflex, and (3) the apnea test carries a risk of precipitating BD in a non-BD patient, provides no benefit to the patient, does not reliably accomplish its intended purpose, and is not even absolutely necessary for diagnosing BD according to the internal logic of the Guidelines; it should at the very least require informed consent, as do many procedures that are much more beneficial and less risky. Finally, objections to a neurologic criterion of death are not based only on religious belief or ignorance. People have a right to not have a concept of death that experts vigorously debate imposed upon them against their judgment and conscience; any revision of the UDDA should therefore contain an opt-out clause for those who accept only a circulatory-respiratory criterion. (shrink)

This article provides an ethnographic account of pediatric cochlear implantation, revealing an important shift in the definition of deafness from a sensory loss to a neurological processing problem. In clinical and long-term therapeutic practices involved in pediatric implantation, the cochlear implant is recast as a device that merely provides access to the brain. The “real” treatment emerges as long-term therapeutic endeavors focused on neurological training. This redefinition then ushers in an ensuing responsibility to “train the brain,” subsequently displacing (...) failure from the device onto the individual’s ability to train his or her brain. New caregiving techniques that accompany implantation are understood through neuropolitics, showing how parents are encouraged to engage in neuro-self-governance, and how the concept of neuroplasticity is used to cultural ends. (shrink)

This paper examines the culture, the dynamics and the financial underpinnings that determine how medical research is being conducted on children in the United States. Children have increasingly become the subject of experiments that offer them no potential direct benefit but expose them to risks of harm and pain. A wide range of such experiments will be examined, including a lethal heartburn drug test, the experimental insertion of a pacemaker, an invasive insulin infusion experiment, and a fenfluramine "violence prediction" experiment. (...) Emphasis, however, is given to psychoactive drug tests because of the inherent ethical and diagnostic problems involved in the absence of any objective, verifiable diagnostic tool. Effort is made to provide readers comprehensive reference sources to evidence-based reports about the serious risks these drugs pose for adults and children so that the reader may judge whether the benefits (if any) outweigh the risks for children. The first ethical issue raised by these experiments is: did the severity of illness in these children justify their exposure to short and long-term risks? The ethics of the experiments will be evaluated by referring to existing codes of medical research ethics-the Nuremberg Code, the Declaration of Helsinki, and the federal Code of Regulations. The thirteen cases presented will demonstrate that children are being used in ever more speculative experiments, often in the absence of a therapeutic intent, but a significant chance for causing harm and / or discomfort. Some of the experiments were designed to explore the mechanisms of pathology and pharmacological interventions, or the response of neurological brain receptors to chemical provocation ("challenge"). Others were designed to test the safety or efficacy of new drugs, even to test these drugs on healthy children who were hypothesized to be "at risk." Children and adolescents have been subjected to "forced dose titration" experiments that induced a spectrum of severe adverse effects, including insomnia, extreme restlessness, agitation, (akathisia) and self-injurious behavior. FDA reports show that suicide is a significant issue in psychotropic drug trials-in pediatric trials the problem is even greater. The paper aims to demonstrate how the enactment of the Better Pharmaceuticals for Children Act (incorporated into the Food and Drug Administration Modernization Act, FDAMA), set in motion a radical shift in public policy by providing huge financial incentives to pharmaceutical companies to test new or patented drugs in children. Federal policy shifted from one aimed at protecting children by setting limits on permissible research risks, to a policy aimed at broadening the inclusion of children as test subjects. It will be shown how the FDA and the Department of Health and Human Services lifted regulatory restrictions to permit research involving greater than minimal risk to be conducted on healthy children, claiming that all children are potentially "at risk" of a future condition. Children were in this way deprived of regulatory protections. An argument will be made that the approval of nontherapeutic, harmful experiments-such as exposure of toddlers to lead poison-under the current gate keeping system raises serious doubts about the sustainability of institutional review boards (IRBs) as protectors of human research subjects. Children, who are precluded from exercising the adult human's right to informed consent, are being exploited as commodities for commercial ends. It is the position of the author that nothing less than the enactment of a federal law mandating a radical overhaul of the current research review system, with independent checks and balances, will provide children the legal protections they need. Ten specific recommendations are offered to protect children from harmful experiments. (shrink)

This paper discusses the use of deep brain stimulation for the treatment of neurological and psychiatric disorders in children. At present, deep brain stimulation is used to treat movement disorders in children and a few cases of deep brain stimulation for psychiatric disorders in adolescents have been reported. Ethical guidelines on the use of deep brain stimulation in children are therefore urgently needed. This paper focuses on the decision-making process, and provides an ethical framework for (future) treatment decisions in (...) class='Hi'>pediatric deep brain stimulation. I defend a shared decision-making model in case of deep brain stimulation for neurological and psychiatric disorders in children. To protect the vulnerable child patient, a dual consent process is needed where parents or parental guardians give their consent, and the child gives his/her assent. (shrink)

Amblyopia, or lazy eye, is a neurological vision disorder that studies have shown to affect two to five percent of the population. Current methods of treatment produce the best visual outcome, if the condition is identified early in the patient's life. Several early screening procedures are aimed at finding the condition while the patient is a child, including an automated vision screening system. This paper aims to use artificial intelligence techniques to automatically identify children who are at risk for developing (...) the amblyopic condition and should therefore be referred to a specialist, i.e., pediatric ophthalmologist. Three techniques, namely, decision tree learning, random forest, and artificial neural network, are studied in this paper in terms of their effectiveness, using metrics of sensitivity, specificity, and accuracy. The features used by the techniques are extracted from images of patient eyes and are based on the color information. The efficacy of pixel color data is investigated with respect to the measurement of the rate of change of the color in the iris and pupil, i.e., color slope features. A 10-fold stratified cross validation procedure is used to compare the effectiveness of the three AI techniques in this medical application domain. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Things Are NOT OkayLynne HillardThree doctors, each with good intentions, led us to believe that everything would be all right for our son Ben. In the fall of 2008, Ben presented with two documented seizures. We first saw a doctor from our pediatrician’s office. He told us not to worry since the basic neurological physical exam showed nothing, but recommended that we see a pediatric neurologist. He gave (...) us a list of recommended doctors, and upon leaving the examining room the doctor then said, “Don’t worry. It’s not a brain tumor.”We arranged a meeting with one of the pediatric neurologists who had been practicing for a long time and had worked in one of the well–respected children’s hospitals before going into private practice. She was attentive and kind and spent a couple hours with us as we went over Ben’s medical history. She examined Ben and found nothing unusual, in fact per her notes, “his neurological examination is better than normal.” She said that she would order an EEG and a brain MRI because he had two witnessed seizures. She asked us to look into family history to see if there was anyone with a history of seizures in either one of our families. Upon leaving she said not to worry that it was probably something that he would out grow.After looking into family history, I found out that my older brother had had a couple of seizures when he was about twelve. He was put on phenobarbital. He eventually outgrew the seizures. Armed with this information I felt certain that Ben’s issues were hereditary. It was right before Christmas 2008, so I delayed on getting the EEG and brain MRI until January of that new year. The results of the EEG were unremarkable. The following week was the MRI. The day after the MRI, the receptionist at the neurologist’s office called. She requested that we come in the next day and asked that Ben not come to the appointment.“I am sorry to tell you, but Ben has a brain tumor.” What? I couldn’t even concentrate on what the doctor was saying. Ben’s tumor was located in the right temporal lobe and extensively involved the right amygdala and right hippocampus.I remember feeling completely overwhelmed with the process of choosing the individual who would ultimately perform brain surgery on our son. My husband and I interviewed three surgeons within a few weeks. On March 20 of 2009 Ben underwent surgery. The neurosurgeon was able to remove about 75 percent of the tumor. Two days after surgery Ben was released from the hospital. I remember that surreal feeling. My son had just had brain surgery and now we were going home with a list of medications and a schedule for administering the medications. I felt inept, unprepared, and yet relieved that my son had made it through; he could talk, he could move all his limbs and everything appeared to be normal. The only distinguishing feature that anything had happened was the six–inch scare on the side of his head.The pathology report said it was a DNET tumor (Dysembryoplastic Neuroepithelial Tumor), one that should not re–grow or cause any further problems. I remember the audible sigh of relief that came out of my mouth. I remember the neurosurgeon’s words: “Ben will grow up to be a fi ne young man, and you will dance with him at his wedding.” I wanted to be happy, like I had won the lottery, but I had this feeling that there must be something more to this, it couldn’t be this easy.In his second year at preschool Ben’s behavior problems became more obvious. When Ben became overwhelmed he would just sit down and not budge. Even when the director of the preschool asked us if there were any problems that were the result of his anti–seizure medication or his surgery, we said “no” because we were told “all should be good.” But all along there was that nagging feeling that not all was good in Ben’s world. [End Page 11]In... (shrink)

There is nothing more humbling to one’s inner moral compass than to realize that you do not initially know what is right or wrong! I found myself in just such a situation after reading the above case. Much has been written, both in the professional literature and the popular media, about the “Ashley Treatment” since Gunther and Diekema published their article in 2006. It is unclear if others in the United States or around the world have, to any significant degree, (...) adopted growth attenuation therapy and/or surgical intervention for children with severe neurological compromise, but the case quoted above suggests that hospital ethics committees may also be struggling with these decisions. An informal survey of pediatric endocrinologists, mentioned in a recent article on the topic, claims that many physicians are facing this dilemma as well. (shrink)

Background: There is limited research on brain lesions in children with cerebral visual impairment of heterogeneous etiologies and according to associated subtyping and vision dysfunctions. This study was part of a larger project establishing data-driven subtypes of childhood CVI according to visual dysfunctions. Currently there is no consensus in relation to assessment, diagnosis and classification of CVI and more information about brain lesions may be of potential diagnostic value.Aim: This study aimed to investigate overall patterns of brain lesions and associations (...) with level of visual dysfunction and to compare the patterns between the classification subgroups in children with CVI.Methods: School-aged children with CVI received ophthalmological and neuro-psychological/developmental assessments to establish CVI-related subtyping. Other pediatric information was collected from medical records. MRI scans were coded according to a semi-quantitative template including brain regions and summed for total scores. Non-parametric analyses were conducted.Results: 28 children had clinical brain MRI scans available [44% of total sample, Group A n = 16, Group B n = 12]. Total brain scores ranged between 0 and 18 and were widespread across regions. 71 per cent had post-geniculate visual pathway damage. The median total brain and hemisphere scores of Group B were higher than subgroup A but differences did not reach statistical significance. No statistically significant associations were found between brain scores and vision variables.Conclusion: This study found a spread of lesions across all regions on the brain scans in children with congenital CVI. The majority had damage in the postgeniculate visual pathways and visual cortex region suggesting this is an area of interest and potentially informative for diagnosis. However the subtyping classification did not show differences in number or region of lesions though the trend was higher toward Group B. This study confirms the complex diffuse and variable nature of brain lesions in children with congenital CVI, many of whom have other neurological impairments. (shrink)

In 2006, a paper in the journal Archives of Pediatric and Adolescent Medicine described a novel case of growth attenuation therapy and other treatments carried out on Ashley, a severely cognitively, neurologically and physically disabled 6-year-old girl. Some of the moral arguments that have sprung up in respect of the so-called “Ashley treatment” are considered, and it is suggested that they all miss something—that the proper treatment of Ashley may have as much to do with doctors’ duties to themselves (...) as with their duties to her. It is suggested that the Ashley treatment may have been in violation of doctors’ self-regarding duties and that this possibility is worthy of further investigation. (shrink)

Research on human subjects aims to obtain knowledge of vital importance for human health and functioning. Neuroscientific research specifically is understood as oriented towards three goals: the maintenance of neurological health, the treatment of neurological diseases or syndromes, and the enhancement of neurological functioning. Most guidelines or regulations for pediatric research (whether in the U.S. or elsewhere) require that if a research intervention exposes subjects to more than minimal risk, a prospect of direct benefit is required—along with some other (...) important criteria. It is also required for any research project, that the methods and design will yield scientifically valid knowledge. This is typically met via placebo-controlled trials. This chapter presents an argument to the effect that more than minimal risk research on pediatric subjects cannot meet both ethical requirements. The basic idea is that either the subjects in the control or experimental arm will receive a prospect of direct benefit, but not both. This chapter also argues that the ethical weight or importance of this dilemma is very acute for neuroscientific research given the complexity of the brain’s functioning and the correlated difficulty of judging whether there is a “prospect” of direct benefit. The second half responds to this argument via a case study in neuroscientific research. The solution recapitulates a type of component analysis according to which different ethical principles apply to different activities of a research study. (shrink)

IntroductionDeep brain stimulation (DBS) is increasingly used to treat the symptoms of various neurologic and psychiatric conditions. People can undergo the procedure during reproductive years but the safety of DBS in pregnancy remains relatively unknown given the paucity of published cases. We thus conducted a review of the literature to determine the state of current knowledge about DBS in pregnancy and to determine how eligibility criteria are approached in clinical trials with respect to pregnancy and the potential for pregnancy.MethodsA literature (...) review was conducted in EMBASE to identify articles involving DBS and pregnancy. Two reviewers independently analyzed the articles to confirm inclusion. Data extracted for analysis included conditions treated, complications at all stages of pregnancy, neonatal/pediatric outcomes, and DBS target. A second search was then conducted using www.clinicaltrials.gov. The same two reviewers then assessed whether each trial excluded pregnant individuals, lactating individuals, or persons of childbearing age planning to conceive. Also assessed was whether contraception had to be deemed adequate prior to enrollment.ResultsThe literature search returned 681 articles. Following independent analysis and agreement of two reviewers, 8 pregnancy related DBS articles were included for analysis. These articles described 27 subjects, 29 pregnancies (2 with subsequent pregnancies), and 31 infants (2 twin pregnancies). There was 1 preterm birth at 35 weeks, and 3 patients who experienced discomfort from the DBS battery (i.e., impulse generator) placement site. All 27 patients had a DBS device implanted before they became pregnant, which remained in use throughout their pregnancy. There was exclusion of pregnant individuals from 68% of 135 interventional trials involving DBS. Approximately 44% of these trials excluded persons of childbearing age not on “adequate contraception” or wishing to conceive in the coming years. Finally, 22% excluded breastfeeding persons.ConclusionThe data from 29 pregnancies receiving DBS treatment during pregnancy was not associated with unexpected pregnancy or post-partum complication patterns. Many clinical trials have excluded pregnant individuals. Documentation of outcomes in larger numbers of pregnancies will help clarify the safety profile and will help guide study designs that will safely include pregnant patients. (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)

Training residents to become humanistic physicians capable of empathy, compassionate communication, and holistic patient care is among our most important tasks as physician educators. Narrative medicine aims to foster those highly desirable characteristics, and previous studies have shown it to be successful in fostering self-reflection, emotional processing, and preventing burnout. We aimed to evaluate pediatric residents’ perceptions of a novel narrative medicine curriculum. After the initiation of a longitudinal narrative medicine curriculum, focus groups were conducted with residents who participated (...) in at least one narrative medicine session. The curriculum was viewed positively, and residents found the sessions to be helpful in developing empathy, offering a space for reflection, and introducing new perspectives. Challenges noted were perception of relevance, timing of sessions, and interpretation by non-native English-speaking residents. With attention to linguistics and thematic undertones, narrative medicine is a feasible, replicable, and accepted teaching modality for pediatric residents to foster empathy, process emotions, and participate in self-reflection. (shrink)

The return of individual research results to participants raises many socio-ethical issues and is even more challenging when the participant is a child. The objective of this article is to present an overview of the few ethical guidelines and relevant literature addressing the return of individual results in pediatric research. By reviewing policies and the literature, we present some overarching considerations and delineate contextual issues in order to propose a framework.

As a matter of respect for the person, it is considered an ethical duty to offer to return research results to participants where appropriate. Nevertheless, the return of individual research results to participants raises many socio-ethical issues and greater challenges when the participant is a child. This discrepancy arises partly because the return of individual pediatric research results entails a tripartite relationship between researcher, child, and parent and is embroiled in numerous considerations.Extra caution is required in the pediatric (...) research context because children cannot generally decide whether they want to be informed of their own research results or whether the results should be disclosed to parents. Children have long been considered a special and vulnerable group, and their parents, as guardians, play a critical role in the consent process. However, with regards to the return of individual research results, this might pose a potential conflict of interest between the current or future desires of the child and those of the parents. (shrink)

As our knowledge of the functional and pharmacological architecture of the nervous system increases, we are getting better at treating cognitive and affective disorders. Along with the ability to modify cognitive and affective systems in disease, we are also learning how to modify these systems in health. “Cosmetic neurology,” the practice of intervening to improve cognition and affect in healthy individuals, raises several ethical concerns. However, its advent seems inevitable. In this paper I examine this claim of inevitability by (...) reviewing the evolution of another medical practice, cosmetic surgery. Cosmetic surgery also enhances healthy people and, despite many critics, it is practiced widely. Can we expect the same of cosmetic neurology? The claim of inevitability poses a challenge for both physicians and bioethicists. How will physicians reconsider their professional role? Will bioethicists influence the shape of cosmetic neurology? But first, how did cosmetic surgery become common? (shrink)

This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers’ moral distress and decrease length of stay for patients with life-threatening illnesses. We evaluated the innovation using a pre/post intervention design measuring provider moral distress and comparing patient outcomes using retrospective historical controls. Physicians and nurses on staff in our pediatric intensive care unit in a quaternary care children's hospital participated in the evaluation. There were 60 patients (...) in the interventional group and 66 patients in the historical control group. We evaluated the impact of weekly meetings to establish goals of care for patients with longer than 10 days length of stay in the ICU for a year. Moral distress was measured intermittently and reported moral distress thermometer scores fluctuated. "Clinical situations" represented the most frequent contributing factor to moral distress. Post intervention, overall moral distress scores, measured on the moral distress scale revised, were lower for respondents in all categories, and on three specific items. Patient outcomes before and after PEACE intervention showed a statistically significant decrease in PRISM indexed LOS, a statistically significant increase in both code status changes DNR, and in-hospital death, with no change in patient 30 or 365 day mortality. The addition of a clinical ethicist and senior intensivist to weekly inter-professional team meetings facilitated difficult conversations regarding realistic goals of care. The study demonstrated that the PEACE intervention had a positive impact on some factors that contribute to moral distress and can shorten PICU length of stay for some patients. (shrink)

Adolescents present a puzzle. There are foundational unclarities about how they should be regarded as decision-makers. Although superficially adolescents may appear to have mature decisional capacity, their decision-making is in many ways unlike that of adults. Despite this seemingly obvious fact, a concern for the claims of autonomy has led to the development of the legal doctrine of the mature minor. This legal construct considers adolescents, as far as possible, as equivalent to adults for the purpose of medical decision-making. The (...) movement to support independent decision-making by adolescents through providing information to them and securing their consent apart from their parents is encouraged by those legal understandings that hold that unemancipated minors should generally be considered as possessing effective decisional capacity. Such legal structures, however, do not adequately take account of the wide variations in adolescent capacities, the immaturity of most adolescent decision-makers, or the important contributions made by parents to the development of their adolescents through parental partnering in the adolescent’s decision-making. The data available indicate that in general adolescents should be regarded as apprentice decision-makers who should make decisions in collaboration with their parents until at least the age of 18. Steps should not be taken pre-emptively to isolate adolescents from the guidance of their parents. As a general rule, what Piker has referred to as “collaborative paternalism” appears most likely both to protect adolescents from their own untoward choices, while also very importantly helping them with parental guidance to develop into mature decision-makers with the capacity to make medical choices on their own. (shrink)

This article provides practical guidance for researchers who wish to enroll and collect data from pediatric research participants through online and mobile platforms, with a focus on the involvement of both children and their parents in the decision to participate.

Dystonia is a movement disorder that can have a debilitating impact on motor functions and quality of life. There are 250,000 cases in the United States, most with childhood onset. Due to the limited effectiveness and side effects of available treatments, pediatric deep brain stimulation has emerged as an intervention for refractory dystonia. However, there is limited clinical and neuroethics research in this area of clinical practice. This paper examines whether it is ethically justified to offer pDBS to children (...) with refractory dystonia. Given the favorable risk-benefit profile, it is concluded that offering pDBS is ethically justified for certain etiologies of dystonia, but it is less clear for others. In addition, various ethical and policy concerns are discussed, which need to be addressed to optimize the practice of offering pDBS for dystonia. Strategies are proposed to help address these concerns as pDBS continues to expand. (shrink)

We are developing the Neurological Disease Ontology (ND) to provide a framework to enable representation of aspects of neurological diseases that are relevant to their treatment and study. ND is a representational tool that addresses the need for unambiguous annotation, storage, and retrieval of data associated with the treatment and study of neurological diseases. ND is being developed in compliance with the Open Biomedical Ontology Foundry principles and builds upon the paradigm established by the Ontology for General Medical Science (OGMS) (...) for the representation of entities in the domain of disease and medical practice. Initial applications of ND will include the annotation and analysis of large data sets and patient records for Alzheimer’s disease, multiple sclerosis, and stroke. (shrink)

More than 20 years ago, the pioneering pediatric ethicist William Bartholome wrote a fiery letter to the editor of this journal because he thought a recently published statement on pediatric assent, from the Committee on Bioethics of the American Academy of Pediatrics (AAP), showed insufficient respect for children. That AAP statement, like its 2016 update, asserts that pediatric assent should be solicited only when a child’s dissent will be honored. Bartholome objected that pediatricians should always solicit children’s (...) assent and that they should acknowledge and apologize when they treat children over their objections even when they must do so to promote children’s best interests. We think Bartholome was right. In this brief commentary, we elaborate on his perspective about the moral value of pediatric assent, and we suggest improvements to the corresponding clinical guidance. (shrink)

One of the primordial functions of the brain is the acquisition of knowledge. The apparatus that it has evolved to do so is flexible enough to allow it to acquire knowledge about unambiguous conditions on the one hand, and about situations that are capable of two or more interpretations, each one of which has equal validity with the others. However, in the latter instance, we can only be conscious of one interpretation at any given moment. The study of ambiguity thus (...) gives us some insights into how activity at different stations of the brain can result in a micro-consciousness for an attribute, and also tell us something about interactions between different cerebral areas that result in several potential micro-conscious correlates, though only one predominates at any given time. Finally, the study of ambiguity also gives us insights into the neurological machinery that artists have tapped to create the ambiguity that is commonly a hallmark of great works of art. (shrink)

This article will explore pediatric consent through the analysis of a clinical case study using the principles of biomedical ethics approach. Application of the principles of autonomy, nonmaleficence, beneficence, and justice will be dissected in order to attempt to establish resolution of the ethical dilemma. The main conflict in this case study deals with whether the wishes of an adolescent for end-of-life care should be followed or should the desire of his parents outweigh this request. In terminal cancer, the (...) hope of early palliative care and dignity in dying serve as priorities in therapy. Application of the moral principles to both sides of the dilemma aided in providing an objective resolution to uphold pediatric consent. (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)

Pediatric participation in non-therapeutic research that poses greater than minimal risk has been the subject of considerable thought-provoking debate in the research ethics literature. While the need for more pediatric research has been called morally imperative, and concerted efforts have been made to increase pediatric medical research, the importance of protecting children from undue research risks remains paramount.United States research regulations are derived largely from the deliberations and report of the National Commission for the Protection of Human (...) Subjects of Biomedical and Behavioral Research. The authors of this report specifically designated children as a vulnerable population and suggested additional protections, most of which became U.S. law. One of the more contested sets of regulations surrounds non-therapeutic research, e.g., research that does not offer the potential for direct benefit to participants. Federal regulations allow local Institutional Review Boards to approve non-therapeutic research posing a minor increase above minimal risk when it involves children who have the disease or medical condition that the research addresses. (shrink)

Randomized Clinical Trials in the medical community are generally lasting longer due to a number of factors, including an increase in the total volume of biomedical research, expanded federal regulatory requirements, and a rise in patient interest in participating as research subjects. Leading national and international initiatives promote clinical research in children. The primary impetus for these initiatives is the need for adequate data for clinical application of new products and treatment approaches in the pediatric population. Clinical investigations must (...) maintain ethical conduct as an essential component of pediatric research.Ethical issues associated with clinical research in general have received prominent public and scientific attention. Of particular interest is informed consent, or assent, as applied to pediatrics. There is little practical guidance concerning pediatric assent from legal and ethical disciplines; the law has played only a small role in few cases. (shrink)

A new view of the functional role of the left anterior cortex in language use is proposed. The experimental record indicates that most human linguistic abilities are not localized in this region. In particular, most of syntax (long thought to be there) is not located in Broca's area and its vicinity (operculum, insula, and subjacent white matter). This cerebral region, implicated in Broca's aphasia, does have a role in syntactic processing, but a highly specific one: It is the neural home (...) to receptive mechanisms involved in the computation of the relation between transformationally moved phrasal constituents and their extraction sites (in line with the Trace-Deletion Hypothesis). It is also involved in the construction of higher parts of the syntactic tree in speech production. By contrast, basic combinatorial capacities necessary for language processing – for example, structure-building operations, lexical insertion – are not supported by the neural tissue of this cerebral region, nor is lexical or combinatorial semantics. The dense body of empirical evidence supporting this restrictive view comes mainly from several angles on lesion studies of syntax in agrammatic Broca's aphasia. Five empirical arguments are presented: experiments in sentence comprehension, cross-linguistic considerations (where aphasia findings from several language types are pooled and scrutinized comparatively), grammaticality and plausibility judgments, real-time processing of complex sentences, and rehabilitation. Also discussed are recent results from functional neuroimaging and from structured observations on speech production of Broca's aphasics. Syntactic abilities are nonetheless distinct from other cognitive skills and are represented entirely and exclusively in the left cerebral hemisphere. Although more widespread in the left hemisphere than previously thought, they are clearly distinct from other human combinatorial and intellectual abilities. The neurological record (based on functional imaging, split-brain and right-hemisphere-damaged patients, as well as patients suffering from a breakdown of mathematical skills) indicates that language is a distinct, modularly organized neurological entity. Combinatorial aspects of the language faculty reside in the human left cerebral hemisphere, but only the transformational component (or algorithms that implement it in use) is located in and around Broca's area. Key Words: agrammatism; aphasia; Broca's area; cerebral localization; dyscalculia; functional neuroanatomy; grammatical transformation; modularity; neuroimaging; syntax; trace deletion. (shrink)

I much appreciate the honour of being invited to deliver the first Manson lecture, which, its founder has laid down, is to be devoted to the consideration of some subject of common interest to philosophy and medicine. I cannot think of anything which better fulfils that condition than the neurological approach to the problem of perception. The neurologist holds the bridge between body and mind. Every day he meets with examples of disordered perception and he learns from observing the effects (...) of lesions produced by disease, or by the physiologist's experiments, something of how the neural basis of perception is organized. It is possible to study perception as though this was largely irrelevant. How far that view is right will be for you to judge when I have finished. (shrink)

Brain-computer interfaces (BCIs) are being investigated as an access pathway to communication for individuals with physical disabilities, as the technology obviates the need for voluntary motor control. However, to date, minimal research has investigated the use of BCIs for children. Traditional BCI communication paradigms may be suboptimal given that children with physical disabilities may face delays in cognitive development and acquisition of literacy skills. Instead, in this study we explored emotional state as an alternative access pathway to communication. We developed (...) a pediatric BCI to identify positive and negative emotional states from changes in hemodynamic activity of the prefrontal cortex (PFC). To train and test the BCI, 10 neurotypical children aged 8–14 underwent a series of emotion-induction trials over four experimental sessions (one offline, three online) while their brain activity was measured with functional near-infrared spectroscopy (fNIRS). Visual neurofeedback was used to assist participants in regulating their emotional states and modulating their hemodynamic activity in response to the affective stimuli. Child-specific linear discriminant classifiers were trained on cumulatively available data from previous sessions and adaptively updated throughout each session. Average online valence classification exceeded chance across participants by the last two online sessions (with 7 and 8 of the 10 participants performing better than chance, respectively, in Sessions 3 and 4). There was a small significant positive correlation with online BCI performance and age, suggesting older participants were more successful at regulating their emotional state and/or brain activity. Variability was seen across participants in regards to BCI performance, hemodynamic response, and discriminatory features and channels. Retrospective offline analyses yielded accuracies comparable to those reported in adult affective BCI studies using fNIRS. Affective fNIRS-BCIs appear to be feasible for school-aged children, but to further gauge the practical potential of this type of BCI, replication with more training sessions, larger sample sizes, and end-users with disabilities is necessary. (shrink)