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Background and ObjectivesClinicians often communicate complex, uncertain, and distressing information about neurologic prognosis to parents of critically ill infants. Although communication tools have been developed in other disciplines and settings, none address the unique needs of the neonatal and pediatric neurology context. We aimed to develop a parent-informed framework to guide clinicians in communicating information about neurologic prognosis.MethodsParents of infants with neurologic conditions in the intensive care unit were enrolled in a longitudinal study of shared decision-making from 2018 to 2020. Parents completed semistructured interviews following recorded family meetings with the health care team, at hospital discharge, and 6 months after discharge. All interviews targeted information about parent preferences for prognostic disclosure. We analyzed the data using a conventional content analysis approach. Two study team members independently coded all interview transcripts, and discrepancies were resolved in consensus. We used NVIVO 12 qualitative software to index and organize codes.ResultsFifty-two parents of 37 infants completed 123 interviews. Parents were predominantly mothers (n = 37/52, 71%) with a median age of 31 (range 19–46) years. Half were Black (n = 26/52, 50%), and a minority reported Hispanic ethnicity (n = 2/52, 4%). Inductive analysis resulted in the emergence of 5 phases of prognostic communication (Approach, Learn, Inform, Give support, and Next steps: ALIGN): (1) Approach: parents appreciated receiving consistent information about their child's neurologic outcome from clinicians who knew their child well. (2) Learn: parents valued when clinicians asked them how they preferred receiving information and what they already knew about their child's outcome prior to information delivery. (3) Inform: parents valued honest, thorough, and balanced information that disclosed prognostic uncertainty and acknowledged room for hope. (4) Give support: parents valued empathic communication and appreciated clinicians who offered real-time emotional support. (5) Next steps: parents appreciated clinicians who connected them to resources, including peer support.DiscussionThe ALIGN framework offers a novel, parent-informed strategy to effectively communicate neurologic prognosis. Although ALIGN represents key elements of a conversation about prognosis, each clinician can adapt this framework to their own approach. Future work will assess the effectiveness of this framework on communication quality and prognostic understanding.

OBJECTIVES Many serious or life-threatening neurologic conditions are first diagnosed during the fetal period, often following a routine ultrasound or sonographic evaluation after an abnormal aneuploidy screen. Such conditions represent a worrisome or unexpected finding for expectant parents, making the perinatal period a critical time point to engage and empower families encountering complex neurologic clinical scenarios. This review covers the role of perinatal palliative care in these settings. STUDY DESIGN Topical review RESULTS:: The prenatal identification of structural abnormalities of the brain or spinal cord, radiographic signs of hemorrhage or ischemic injury, or evidence of genetic or metabolic conditions should prompt involvement of a fetal palliative care team. The inherent prognostic uncertainty is challenging for prenatally diagnosed neurologic conditions which have difficult to predict short and long-term outcomes. While many of these conditions lead to the birth of an infant with neurodevelopmental challenges, few result in in utero demise. Palliative care beginning in the perinatal period provides an additional layer of support for families navigating complex decision-making during their pregnancy and provides continuity of care into the newborn period. Palliative care principles can help guide discussions around genetic and other diagnostic testing, fetal surgery, and birth planning. A multidisciplinary team can help support families with decision-making and through bereavement care in the setting of fetal or neonatal death. CONCLUSION Early palliative care team involvement can provide a more holistic approach to counseling, facilitate planning, and ensure that a family's goals and wishes are acknowledged throughout an infant's care trajectory. KEY POINTS · Many serious or life-threatening neurologic conditions are diagnosed during the fetal period.. · Palliative care principles should be incorporated in the fetal period for affected patients.. · Palliative care clinicians can aid parents and clinicians in shared decision-making.. · Palliative care principles should be employed by all care providers in relevant cases..

Objectives This study aimed to characterize the use and impact of assessments of understanding in parent-clinician communication for critically ill infants. Methods We enrolled parents and clinicians participating in family conferences for infants with neurologic conditions. Family conferences were audio recorded as they occurred. We used a directed content analysis approach to identify clinician assessments of understanding and parent responses to those assessments. Assessments were classified based on an adapted framework; responses were characterized as “absent,” “yes/no,” or “elaborated.” Results Fifty conferences involving the care of 25 infants were analyzed; these contained 374 distinct assessments of understanding. Most (n = 209/374, 56%) assessments were partial (i.e. okay?); a minority (n = 60/374, 16%) were open-ended. When clinicians asked open-ended questions, parents elaborated in their answers most of the time (n = 55/60, 92%). Approximately three-quarter of partial assessments yielded no verbal response from parents. No conferences included a teach-back. Conclusions Although common, most clinician assessments of understanding were partial or close-ended and rarely resulted in elaborated responses from parents. Open-ended assessments are an effective, underutilized strategy to increase parent engagement and clinician awareness of information needs. Practice implications Clinicians hoping to facilitate parent engagement and question-asking should rely on open-ended statements to assess understanding.

ObjectiveTo compare key seizure and outcome characteristics between neonates with and without cardiopulmonary disease.Study designThe Neonatal Seizure Registry is a multicenter, prospectively acquired cohort of neonates with clinical or electroencephalographic (EEG)-confirmed seizures. Cardiopulmonary disease was defined as congenital heart disease, congenital diaphragmatic hernia, and exposure to extracorporeal membrane oxygenation. We assessed continuous EEG monitoring strategy, seizure characteristics, seizure management, and outcomes for neonates with and without cardiopulmonary disease.ResultsWe evaluated 83 neonates with cardiopulmonary disease and 271 neonates without cardiopulmonary disease. Neonates with cardiopulmonary disease were more likely to have EEG-only seizures (40% vs 21%, P&nbsp

Neonatal neuropalliative care is directed toward patients and families impacted by serious, life limiting, or debilitating neurologic illness in the antenatal and newborn period. This chapter will outline key considerations for clinicians hoping to provide a neuropalliative care approach antenatally, at birth, and in the neonatal intensive care unit. We focus on three core domains: (1) family-centered communication and care, (2) prognostication and decision-making, and (3) pain and symptom management. In each domain, we outline key considerations in the antenatal period, at birth, and in the neonatal intensive care unit. We also address special considerations in care at the end of life and in varied cultural and practice contexts. We conclude with suggestions for future research and key considerations for neonatal clinicians who wish to incorporate a neuropalliative approach to care into their practice.

PURPOSE: Parents of neonates with seizures are at risk of mental health symptoms due to the impact of illness on family life, prognostic uncertainty, and the emotional toll of hospitalization. A family-centered approach is the preferred model to mitigate these challenges. We aimed to identify strategies to promote family-centered care through an analysis of parent-offered advice to clinicians caring for neonates with seizures. BASIC PROCEDURES: This prospective, observational, and multi-center (Neonatal Seizure Registry) study enrolled parents of neonates with acute symptomatic seizures. Parents completed surveys about family well-being at 12 months, 18 months, and 24 months corrected gestational age. Parents were asked open-ended questions eliciting their advice to clinicians caring for neonates with seizures. Responses were analyzed using a conventional content analysis approach. MAIN FINDINGS: Among the 310 parents who completed surveys, 118 (38%) shared advice for clinicians. These parents were predominantly mothers (n=103, 87%). Three overarching themes were identified. (1) Communicate information effectively: Parents appreciate when clinicians offer transparent and balanced information in an accessible way. (2) Understand and validate parent experience: Parents value clinicians who display empathy, compassion, and a commitment to parent-partnered clinical care. (3) Provide support and resources: Parents benefit from emotional support, education, connection with peers, and help navigating the healthcare system. PRINCIPAL CONCLUSIONS: Parents caring for neonates with seizures appreciate a family-centered approach in healthcare encounters, including skilled communication, understanding and validation of the parent experience, and provision of support and resources. Future interventions should focus on building structures to reinforce these priorities.

Little is known about parent and family well-being after acute neonatal seizures. In thus study, we aimed to characterize parent mental health and family coping over the first two years after their child’s neonatal seizures. Parents of 303 children with acute neonatal seizures from nine pediatric hospitals completed surveys at discharge and 12-, 18- and 24-months corrected age. Outcomes included parental anxiety, depression, quality of life, impact on the family, post-traumatic stress and post-traumatic growth. We used linear mixed effect regression models and multivariate analysis to examine relationships among predictors and outcomes. At the two-year timepoint, parents reported clinically significant anxiety (31.5%), depression (11.7%) and post-traumatic stress (23.7%). Parents reported moderately high quality of life and positive personal change over time despite ongoing challenges to family coping. Families of children with longer neonatal hospitalization, functional impairment, post-neonatal epilepsy, receiving developmental support services and families of color reported poorer parental mental health and family coping. Parents of color were more likely to report symptoms of post-traumatic stress and positive personal change. Clinicians caring for children with neonatal seizures should be aware of lasting risks to parent mental health and family coping. Universal screening would enable timely referral for support services to mitigate further risk to family well-being and child development.

ObjectiveTo determine whether screening continuous EEG monitoring (cEEG) is associated with greater odds of treatment success for neonatal seizures.MethodsWe included term neonates with acute symptomatic seizures enrolled in the Neonatal Seizure Registry (NSR), a prospective, multicenter cohort of neonates with seizures. We compared 2 cEEG approaches: (1) screening cEEG, initiated for indications of encephalopathy or paralysis without suspected clinical seizures; and (2) confirmatory cEEG, initiated for the indication of clinical events suspicious for seizures, either alone or in addition to other indications. The primary outcome was successful response to initial seizure treatment, defined as seizures resolved without recurrence within 30 minutes after initial loading dose of antiseizure medicine. Multivariable logistic regression analyses assessed the association between cEEG approach and successful seizure treatment.ResultsAmong 514 neonates included, 161 (31%) had screening cEEG and 353 (69%) had confirmatory cEEG. Neonates with screening cEEG had a higher proportion of successful initial seizure treatment than neonates with confirmatory cEEG (39% vs 18%; p < 0.0001). After adjusting for covariates, there remained a greater odds ratio (OR) for successful initial seizure treatment in the screening vs confirmatory cEEG groups (adjusted OR 2.44, 95% confidence interval 1.45–4.11, p = 0.0008).ConclusionsThese findings provide evidence from a large, contemporary cohort of neonates that a screening cEEG approach may improve odds of successful treatment of acute seizures.Classification of EvidenceThis study provides Class III evidence that for neonates a screening cEEG approach, compared to a confirmatory EEG approach, increases the probability of successful treatment of acute seizures.

Most pediatric patients and families want clear prognostic information across the illness course. Yet when children with poor-prognosis cancer experience prolonged disease stability, uncertainty can make communication particularly challenging. In this study, we aimed to (i) assess how frequently oncologists communicate about prognosis when high-risk cancer does not progress, and (ii) describe prognostic communication patterns in the context of disease stability.In this prospective, longitudinal, mixed-methods study, we audio-recorded serial disease re-evaluation conversations between children with poor-prognosis cancer, their families, and their primary oncologists. For this secondary analysis, we conducted content analysis across serial conversations among 16 patient-parent-oncologist triads for whom the patient's disease remained stable over the 24-month study period.Prognostic communication was absent in50% of recorded conversations. Overall, it comprised only 4% of dialog time, nearly 90% of which was dialog about prognostic uncertainty; discussion of curability occurred infrequently. Three distinct patterns for prognostic communication emerged: (a) "Don't know" statements, avoiding or deferring prognostication; (b) "Worry" statements, preparing families for possible future disease progression; and (c) relief-caveat statements, celebrating disease stability while balancing positivity with caution.Oncologists seldom talked about prognosis with high-risk patients during periods of disease stability; yet when they did, they used thoughtful and effective strategies to prepare families for possible future disease progression. Further research is needed to better understand if, how, and when patients and families with stable disease who are high risk for future disease progression prefer to receive information about prognosis.

We characterize the content and role of prognostic discussion for infants with neurologic conditions.In this descriptive qualitative study, we prospectively enrolled infants (age 1 year) in the intensive care unit with a neurologic condition anticipated to have ≥1 family conference about prognosis or goals of care. We audiorecorded family conferences as they occurred. We used a rapid-cycle qualitative approach to identify and refine themes.Forty infants and 61 parents were enrolled; 68 family conferences occurred for 24 infants. The majority of infant cases (n = 23/24, 96%) and conferences (n = 64/68, 94%) included discussion of neurologic prognosis. Common infant diagnoses included prematurity (n = 12, 52%), genetic conditions (n = 9, 35%), and brain malformations (n = 7, 30%). We identified 2 themes relating to the characterization of the infant's prognosis: (1) predictions of impairment and (2) rationale for prognostic predictions. We identified 3 themes characterizing the role of prognostic discussion: (1) aligning parent and clinician understanding of infant outcome, (2) influencing decision-making, and (3) preparing for life at home. We identified 2 themes characterizing discussion of prognostic uncertainty: (1) multilayered types of uncertainty and (2) holding space for hope alongside uncertainty.In this cohort of infants with neurologic conditions and their parents, we identified salient themes characterizing the content and role of discussion about neurologic outcome. Our findings highlight that prognostic discussion focuses on anticipated impairments, informs decision-making, and helps families prepare for home life. Future work should characterize whether these findings align with parent preferences for prognostic disclosure. ANN NEUROL 2022;92:699-709.

Limited data exist regarding seizure burden, electroencephalogram (EEG) background, and associated outcomes in neonates with acute intracranial infections.This secondary analysis was from a prospective, multicenter study of neonates enrolled in the Neonatal Seizure Registry with seizures due to intracranial infection. Sites used continuous EEG monitoring per American Clinical Neurophysiology Society guidelines. High seizure burden was defined a priori as seven or more EEG-confirmed seizures. EEG background was categorized using standardized terminology. Primary outcome was neurodevelopment at 24-months corrected age using Warner Initial Developmental Evaluation of Adaptive and Functional Skills (WIDEA-FS). Secondary outcomes were postneonatal epilepsy and motor disability.Twenty-seven of 303 neonates (8.9%) had seizures due to intracranial infection, including 16 (59.3%) bacterial, 5 (18.5%) viral, and 6 (22.2%) unknown. Twenty-three neonates (85%) had at least one subclinical seizure. Among 23 children with 24-month follow-up, the WIDEA-FS score was, on average, 23 points lower in children with high compared with low seizure burden (95% confidence interval, [-48.4, 2.1]; P = 0.07). After adjusting for gestational age, infection etiology, and presence of an additional potential acute seizure etiology, the effect size remained unchanged (β = -23.8, P = 0.09). EEG background was not significantly associated with WIDEA-FS score. All children with postneonatal epilepsy (n = 4) and motor disability (n = 5) had high seizure burden, although associations were not significant.High seizure burden may be associated with worse neurodevelopment in neonates with intracranial infection and seizures. EEG monitoring can provide useful management and prognostic information in this population.

OBJECTIVE: To describe treatment preferences and perceived quality of existing outcome measures among children and adolescents with migraine and their caregivers. BACKGROUND: Across disciplines, there is increasing recognition of the value of direct input from stakeholders. Little empirical work has been done to determine what outcomes matter most to pediatric patients with migraine and their caregivers. METHODS: In this qualitative study, we recruited participants from the multicenter, prospective Pediatric Migraine Registry. We used stratified purposive sampling to recruit children and adolescents of varied age and headache frequency. Patients with migraine and their caregivers completed semi-structured interviews targeting treatment preferences and perceived quality of existing outcome measures. Emergent themes and subthemes were identified using conventional content analysis. RESULTS: Thirty dyads of children/adolescents and their caregivers were enrolled and completed 59 interviews (n=29 children/adolescent interviews, n=30 caregiver interviews). Three themes emerged. 1) Symptom relief: Looking beyond headache resolution: Participants described the value in outcomes in addition to pain relief, including a reduction in migraine intensity and improvement in non-pain symptoms. 2) Trade-offs between side effects and relief: Participants described cost-benefit analyses that can occur with headache treatment and acknowledged the impact of drug side effects on daily life and medication adherence. 3) Child-centered treatment: Participants described medication attributes salient to the pediatric context, including age-appropriate routes of administration and adequate safety data. CONCLUSIONS: Children, adolescents, and caregivers impacted by migraine value outcomes in addition to traditionally studied migraine endpoints. Participants valued decreased pain severity, even in the absence of pain resolution. Participants also prioritized the absence of side effects and key medication attributes, including fast onset and age-appropriate routes of administration. These results highlight an opportunity to design patient-centered clinical trials, develop drugs, and support product labeling that align with the outcomes valued most by children and adolescents with migraine and their caregivers.

This study was aimed to characterize the parent experience of caring for a child with posthemorrhagic hydrocephalus and to describe parent preferences for counseling in the neonatal period and beyond.This was a qualitative interview study. Parents of infants born preterm with posthemorrhagic hydrocephalus completed semistructured interviews. Data were analyzed using a content analysis approach.Thematic saturation was reached on parent communication preferences after 10 interviews. Parent experiences of infant hydrocephalus broadly fell into two time periods, the neonatal intensive care unit (NICU) and after NICU discharge. The themes of uncertainty, isolation, hypervigilance, and the need for advocacy were common to each phase.Parents expressed interest in the development of tiered NICU counseling tools that would provide evidence-based and family-centric information to (1) initiate connections with community and peer resources and (2) combat the isolation and hypervigilance that characterized their family experience of living with hydrocephalus.· Infants with posthemorrhagic hydrocephalus are at risk for adverse neurodevelopmental outcomes.. · The parent experience of caring for a child with posthemorrhagic hydrocephalus is not well-described. In this interview study, parents described uncertainty, isolation, and hypervigilance.. · These findings call for structured NICU counseling and longitudinal family supports after discharge..

Background Neonatal seizures are associated with death and neurological morbidity; however, little is known about how neonates with seizures die. Methods This was a prospective, observational cohort study of neonates with seizures treated at seven sites of the Neonatal Seizure Registry. We characterized the mode of death, evaluated the association between infant characteristics and mode of death, and evaluated predictors of death or transfer to hospice. Results We enrolled 611 consecutive neonates with seizures, and 90 neonates (15%) died before hospital discharge at a median age of 11 days (range: 1 to 163 days); 32 (36%) died in the first postnatal week. An additional 19 neonates (3%) were transferred to hospice. The most common mode of in-hospital death was death after extubation amidst concerns for poor neurological prognosis, in the absence of life-threatening physiologic instability (n = 43, 48%). Only one infant died while actively receiving cardiopulmonary resuscitation. In an adjusted analysis, premature birth (odds ratio: 3.06, 95% confidence interval 1.59 to 5.90) and high seizure burden (odds ratio: 4.33, 95% confidence interval 1.88 to 9.95) were associated with increased odds of death or transfer to hospice. Conclusion In a cohort of neonates with seizures, death occurred predominantly after decisions to withdraw or withhold life-sustaining intervention(s). Future work should characterize how these decisions occur and develop optimized approaches to support families and clinicians caring for newborns with seizures.

Parents and clinicians caring for infants with neurologic disease often make high-stakes decisions about infant care. To characterize how these decisions occur, we enrolled infants with neurologic conditions, their parents, and their clinicians in a longitudinal mixed methods study of decision making. We audio recorded family conferences as they occurred and analyzed conferences using a directed content analysis approach. We enrolled 40 infants and 61 parents who participated in 68 family conferences. Thirty-seven conferences contained a treatment decision. We identified 4 key domains of the decision-making process: medical information exchange, values-based exchange, therapeutic partnership, and integration of values into decision making. Discussion of values was typically parent initiated (n = 20, 83%); approximately one-third of conferences did not contain any discussion of parent values. Integration of family values and preferences into decision making occurred in approximately half of conferences. These findings highlight opportunities for interventions that promote values discussion and the integration of values into decision making.

ObjectiveNeonates with seizures have a high risk of mortality and neurological morbidity. We aimed to describe the experience of parents caring for neonates with seizures.DesignThis prospective, observational and multicentre (Neonatal Seizure Registry) study enrolled parents of neonates with acute symptomatic seizures. At the time of hospital discharge, parents answered six open-ended response questions that targeted their experience. Responses were analysed using a conventional content analysis approach.Results144 parents completed the open-ended questions (732 total comments). Four themes were identified. Sources of strength: families valued medical team consensus, opportunities to contribute to their child’s care and bonding with their infant. Uncertainty: parents reported three primary types of uncertainty, all of which caused distress: (1) the daily uncertainty of the intensive care experience; (2) concerns about their child’s uncertain future and (3) lack of consensus between members of the medical team. Adapting family life: parents described the many ways in which they anticipated their infant’s condition would lead to adaptations in their family life, including adjusting their family’s lifestyle, parenting approach and routine. Many parents described financial and work challenges due to caring for a child with medical needs. Emotional and physical toll: parents reported experiencing anxiety, fear, stress, helplessness and loss of sleep.ConclusionsParents of neonates with seizures face challenges as they adapt to and find meaning in their role as a parent of a child with medical needs. Future interventions should target facilitating parent involvement in clinical and developmental care, improving team consensus and reducing the burden associated with prognostic uncertainty.

ObjectiveMedical students experience difficult conversations with patients during clinical clerkships. This study aimed to characterize barriers to and opportunities for learning in the setting of challenging conversations.MethodsNeurology clerkship medical students were enrolled prospectively in a concurrent nested mixed methods study. Qualitative data were collected using a postclerkship survey and semi-structured focus groups. Students were asked to reflect on challenging conversations they experienced with patients and to identify the top reasons why conversations were challenging. Responses were analyzed using directed content analysis.ResultsA total of 159 medical students were enrolled (MS2: n = 35 [22%]; MS3: n = 97 [61%]; MS4: n = 27 [17%]). Three themes of difficulty were identified in survey and focus group data: (1) tough clinical realities: how the clinical environment makes conversations challenging; (2) communication skill needs: the difficulty of finding the words to say; and (3) navigating emotions: of patients, clinicians, and students themselves. Tough clinical realities were cited by over two-thirds of students in all years (MS2: n = 30 [86%]; MS3: n = 74 [76%]; MS4: n = 23 [85%]). Communication skills needs were cited most frequently by third-year students (MS2: n = 15 [43%]; MS3: n = 55 [57%]; MS4: n = 10 [37%]). Students early in training were more likely to cite difficulty navigating emotions (MS2: n = 28 [80%]; MS3: n = 71 [73%]; MS4: n = 19 [70%]).ConclusionsMedical students frequently observe and participate in challenging conversations with patients. Here, students identified what makes these conversations most difficult. Communication curricula should leverage clinical communication encounters, prepare students for inherent clinical realities, and help students navigate emotions in the health care setting.

Objective: This study aimed to describe shunt malfunction symptoms in children ≤5 years old. Results: In a national survey of 228 caregivers, vomiting (23.1%), irritability (20.8%), and sleepiness (17.2%) were the most frequent symptoms of malfunction. These symptoms also occurred in over 1/3 of “false alarms” experienced by 75% of respondents. Compared with malfunctions, irritability (OR = 1.39, 95% CI [1.05, 1.85], p = 0.022) and fever (OR = 2.22, 95% CI [1.44, 3.44], p

Broaching conversations about goals of care can be difficult for clinicians. Presently, the communication strategies used by pediatric oncologists to approach goals of care conversations are not well understood. We recorded disease re-evaluation conversations between pediatric oncologists, patients, and parents, capturing 141 conversations (~2400 minutes) for 17 patients with advancing illness across the study period. We conducted content analysis to identify strategies for broaching goals-of-care conversations and found five distinct communication approaches, which were not mutually exclusive. Further research is needed to explore patient and family views on best practices for broaching discussions about goals of care.

Many childhood neurologic conditions are first diagnosed in the perinatal period and shorten or seriously alter the lives of affected infants. Neonatal neuropalliative care incorporates core practices and teachings of both neurology and palliative care and is directed toward patients and families affected by serious neurologic conditions in the antenatal and immediate newborn period. This review outlines key considerations for neurologists hoping to provide a neuropalliative care approach antenatally, in the neonatal intensive care unit, and around hospital discharge. We explore 4 core domains of neuropalliative care: (1) family-centered communication, (2) prognostication, (3) decision making, and (4) pain and symptom management. We address special considerations in care at the end of life and in varied cultural and practice contexts.

Children with a history of acute provoked neonatal seizures are at high risk for disability, often requiring developmental services. The coronavirus disease 2019 (COVID-19) pandemic has led to widespread changes in how health care is delivered. Our objective was to determine the magnitude of service interruption of among children born between October 2014 and December 2017 and enrolled in the Neonatal Seizure Registry (NSR), a nine-center collaborative of pediatric centers in the United States.This is a prospective cohort study of children with acute provoked seizures with onset ≤44 weeks' gestation and evaluated at age three to six years. Parents of children enrolled in the NSR completed a survey about their child's access to developmental services between June 2020 and April 2021.Among 144 children enrolled, 72 children (50%) were receiving developmental services at the time of assessment. Children receiving services were more likely to be male, born preterm, and have seizure etiology of infection or ischemic stroke. Of these children, 64 (89%) experienced a disruption in developmental services due to the pandemic, with the majority of families (n = 47, 73%) reporting that in-person services were no longer available.Half of children with acute provoked neonatal seizures were receiving developmental services at ages three to six years. The COVID-19 pandemic has led to widespread changes in delivery of developmental services. Disruptions in services have the potential to impact long-term outcomes for children who rely on specialized care programs to optimize mobility and learning.

While medical advancements have led to improved survival of extremely premature infants, children remain at risk for brain injury and neurodevelopmental impairment. Brain imaging can offer insight into an infant's acute and long-term outcome; however, counseling parents about the results and implications of brain imaging remains challenging. The purpose of this article is to review the current literature and describe the challenges associated with counseling families of premature infants on neuroimaging findings. We propose a framework to guide clinicians in counseling parents about brain imaging results, informed by best practices in other disciplines: (FIGURE): 1) Formulate a plan 2) Identify parental needs and values 3) Give information 4) Acknowledge Uncertainty 5) Recognize and Respond to emotions 6) Discuss Expectations and Establish follow-up.

The COVID-19 pandemic has highlighted the importance of social determinants of health in affecting health outcomes. Populations with high social risk are disproportionately impacted by the virus and its economic consequences. Primary care practices have a unique opportunity to implement interventions to mitigate their patients' unmet social needs, such as food and income insecurity. In this commentary, we outline key considerations for clinics implementing programs that identify and address patients' social needs in a way that promotes equity, quality, and sustainability. We provide examples from our own experience at a federally qualified health center.

ImportanceCommunication during conversations about death is critical; however, little is known about the language clinicians and families use to discuss death.ObjectiveTo characterize (1) the way death is discussed in family meetings between parents of critically ill infants and the clinical team and (2) how discussion of death differs between clinicians and family members.Design, Setting, and ParticipantsThis longitudinal qualitative study took place at a single academic hospital in the southeast US. Patients were enrolled from September 2018 to September 2020, and infants were followed up longitudinally throughout their hospitalization. Participants included families of infants with neurologic conditions who were hospitalized in the intensive care unit and had a planned family meeting to discuss neurologic prognosis or starting, not starting, or discontinuing life-sustaining treatment. Family meetings were recorded, transcribed, and deidentified before being screened for discussion of death.Main Outcomes and MeasuresThe main outcome was the language used to reference death during family meetings between parents and clinicians. Conventional content analysis was used to analyze data.ResultsA total of 68 family meetings involving 36 parents of 24 infants were screened; 33 family meetings (49%) involving 20 parents (56%) and 13 infants (54%) included discussion of death. Most parents involved in discussion of death identified as the infant’s mother (13 [65%]) and as Black (12 [60%]). Death was referenced 406 times throughout the family meetings (275 times by clinicians and 131 times by family members); the words die, death, dying, or stillborn were used 5% of the time by clinicians (13 of 275 references) and 15% of the time by family members (19 of 131 references). Four types of euphemisms used in place of die, death, dying, or stillborn were identified: (1) survival framing (eg, not live), (2) colloquialisms (eg, pass away), (3) medical jargon, including obscure technical terms (eg, code event) or talking around death with physiologic terms (eg, irrecoverable heart rate drop), and (4) pronouns without an antecedent (eg, it). The most common type of euphemism used by clinicians was medical jargon (118 of 275 references [43%]). The most common type of euphemism used by family members was colloquialism (44 of 131 references [34%]).Conclusions and RelevanceIn this qualitative study, the words die, death, dying, or stillborn were rarely used to refer to death in family meetings with clinicians. Families most often used colloquialisms to reference death, and clinicians most often used medical jargon. Future work should evaluate the effects of euphemisms on mutual understanding, shared decision-making, and clinician-family relationships.

OBJECTIVE We aimed to evaluate early-life epilepsy incidence, seizure types, severity, risk factors, and treatments among survivors of acute neonatal seizures. METHODS Neonates with acute symptomatic seizures born 7/2015-3/2018 were prospectively enrolled at nine Neonatal Seizure Registry sites. One-hour EEG was recorded at age three months. Post-neonatal epilepsy and functional development (Warner Initial Developmental Evaluation of Adaptive and Functional Skills - WIDEA-FS) were assessed. Cox regression was used to assess epilepsy-free survival. RESULTS Among 282 infants, 37 (13%) had post-neonatal epilepsy by 24-months [median age of onset 7-months (IQR 3-14)]. Among those with post-neonatal epilepsy, 13/37 (35%) had infantile spasms and 12/37 (32%) had drug-resistant epilepsy. Most children with post-neonatal epilepsy had abnormal neurodevelopment at 24-months (WIDEA-FS >2SD below normal population mean for 81% of children with epilepsy vs 27% without epilepsy, RR 7.9, 95% CI 3.6-17.3). Infants with severely abnormal neonatal EEG background patterns were more likely to develop epilepsy than those with mild/moderate abnormalities (HR 3.7, 95% CI 1.9-5.9). Neonatal EEG with ≥3 days of seizures also predicted hazard of epilepsy (HR 2.9, 95% CI 1.4-5.9). In an adjusted model, days of neonatal EEG-confirmed seizures (HR 1.4 per day, 95% CI 1.2-1.6) and abnormal discharge examination (HR 3.9, 95% CI 1.9-7.8) were independently associated with time to epilepsy onset. Abnormal (vs. normal) three-month EEG was not associated with epilepsy. SIGNIFICANCE In this multicenter study, only 13% of infants with acute symptomatic neonatal seizures developed post-neonatal epilepsy by age 24-months. However, there was a high risk of severe neurodevelopmental impairment and drug-resistant seizures among children with post-neonatal epilepsy. Days of EEG-confirmed neonatal seizures was a potentially modifiable epilepsy risk factor. An EEG at three months was not clinically useful for predicting epilepsy. These practice changing findings have implications for family counseling, clinical follow-up planning, and future research to prevent post-neonatal epilepsy.

OBJECTIVES: To characterize decisional satisfaction, regret, and conflict among parents of critically ill infants with neurologic conditions. STUDY DESIGN: In this prospective cohort study, we enrolled parents of infants with neurologic conditions in the intensive care unit (ICU). Hospital discharge surveys included the validated Family Satisfaction with the ICU (FS-ICU) decision-making subscale, Decision Regret Scale (DRS), and Decisional Conflict Scale (DCS). We defined high satisfaction with decision-making as FS-ICU score ≥ 75, high decisional regret/conflict as DRS/DCS score > 25, and within-couple disagreement as a difference between scores of at least 25 points. RESULTS: We enrolled 61 parents of 40 infants (n = 40 mothers, n = 21 fathers); 35mothers and 15 fathers completed surveys. Most mothers reported high satisfaction with decision-making (n = 27/35, 77%) and low decision regret (n = 28/35, 80%); 40% reported high decisional conflict (n = 14/35). Mothers and fathers reported higher decisional conflict in the domains of uncertainty and values clarity as compared with the domain of effective decision-making (Bonferroni-corrected p-values < 0.05). There were no differences in decision outcomes between paired mothers and fathers. However, within any given couple, there were numerous instances of disagreement (n = 7/15 for decision regret and n = 5/15 for decisional conflict). CONCLUSIONS: Many parents experience decisional conflict even if they ultimately have high satisfaction and low regret, underscoring the need for decision aids targeting uncertainty and values clarity. Couples frequently experience different levels of decisional regret and conflict.

OBJECTIVE: Palliative care has the potential to improve goal-concordant care in severe traumatic brain injury (sTBI). Our primary objective was to illuminate the demographic profiles of sTBI patients who receive palliative care encounters (PCEs), with an emphasis on the role of race. Secondary objectives were to analyze PCE usage over time and compare healthcare resource utilization (HCRU) between patients with or without PCEs. DESIGN: Retrospective cohort study. SETTING, PARTICIPANTS, AND INTERVENTION: The National Inpatient Sample (NIS) database was queried for patients age ≥ 18 and a diagnosis of sTBI using International Classification of Diseases, 9th Revision (ICD-9) codes. PCEs were defined using ICD-9 code V66.7 and trended from 2001 to 2015. To assess factors associated with PCE in sTBI patients, we performed unweighted generalized estimating equations regression. PCE association with decision making was modeled via its effect on rate of percutaneous endoscopic gastrostomy (PEG) tube placement. To quantify differences in PCE-related decisions by race, race was modeled as an effect modifier. MEASUREMENTS AND MAIN RESULTS: From 2001 to 2015, the proportion of palliative care usage in sTBI patients increased from 1.5% to 36.3%, with 41.6% of white versus 22.3% of black and 25% of Hispanic sTBI patients having a palliative care consultation in 2015. From 2008 to 2015, we identified 17,673 sTBI admissions. White and affluent patients were more likely to have a PCE than Black and Hispanic and low SES patients. Across all races, patients receiving a PCE resulted in a lower rate of PEG tube placement; however, white patients exhibited a larger reduction of PEG tube placement versus Black patients. Patients using palliative care had lower total hospital costs (median $16,368 versus $26,442). CONCLUSIONS: Palliative care usage for sTBI has increased dramatically this century, and it reduces resource utilization. This is true across races, however, its usage rate and associated effect on decision-making are race-dependent, with white patients receiving more PCE and being more likely to decline a PEG tube if they have had a PCE.

BACKGROUND AND OBJECTIVES: Parents of children with cancer perceive deficits in quality of prognostic communication. How oncologists disclose information about disease progression and incurability and how prognostic communication impacts parental understanding of prognosis are poorly understood. In this study, we aimed to (1) characterize communication strategies used by pediatric oncologists to share prognostic information across a child’s advancing illness course and (2) explore relationships between different communication approaches and concordance of oncologist-parent prognostic understanding. METHODS: In this prospective, longitudinal, mixed-methods study, serial disease reevaluation conversations were audio recorded across an advancing illness course for children with cancer and their families. Surveys and interviews also were conducted with oncologists and caregivers at specific time points targeting disease progression. RESULTS: Seventeen children experienced advancing illness on study, resulting in 141 recordings (40 hours). Fewer than 4% of recorded dialogue constituted prognostic communication, with most codes (77%) occurring during discussions about frank disease progression. Most recordings at study entry contained little or no prognosis communication dialogue, and oncologists rated curability lower than parents across all dyads. Parent-oncologist discordance typically was preceded by conversations without incurability statements; ultimately, concordance was achieved in most cases after the oncologist made direct statements about incurability. Content analysis revealed 3 distinct patterns (absent, deferred, and seed planting) describing the provision of prognostic communication across an advancing pediatric cancer course. CONCLUSIONS: When oncologists provided direct statements about incurability, prognostic understanding appeared to improve. Further research is needed to determine optimal timing for prognostic disclosure in alignment with patient and family preferences.

Objective Infantile spasms (IS) is a severe epilepsy in early childhood. Early treatment of IS provides the best chance of seizure remission and favorable developmental outcome. We aimed to develop a prediction rule to accurately predict which neonates with acute symptomatic seizures will develop IS. Methods We used data from the Neonatal Seizure Registry, a prospective, multicenter cohort of infants with acute symptomatic neonatal seizures born from July 2015 to March 2018. Neonates with acute symptomatic seizures who received clinical electroencephalography (EEG) and magnetic resonance imaging (MRI) and were younger than 2 years of age at the time of enrollment were included. We evaluated the association of neonatal EEG, MRI, and clinical factors with subsequent IS using bivariate analysis and best subsets logistic regression. We selected a final model through a consensus process that balanced statistical significance with clinical relevance. Results IS developed in 12 of 204 infants (6%). Multiple potential predictors were associated with IS, including Apgar scores, EEG features, seizure characteristics, MRI abnormalities, and clinical status at hospital discharge. The final model included three risk factors: (a) severely abnormal EEG or ≥3 days with seizures recorded on EEG, (b) deep gray or brainstem injury on MRI, and (c) abnormal tone on discharge exam. The stratified risk of IS was the following: no factors 0% (0/82, 95% confidence interval [CI] 0%-4%), one or two factors 4% (4/108, 95% CI 1%-9%), and all three factors 57% (8/14, 95% CI 29%-83%). Significance IS risk after acute symptomatic neonatal seizures can be stratified using commonly available clinical data. No child without risk factors, vs >50% of those with all three factors, developed IS. This risk prediction rule may be valuable for clinical counseling as well as for selecting participants for clinical trials to prevent post-neonatal epilepsy. This tailored approach may lead to earlier diagnosis and treatment and improve outcomes for a devastating early life epilepsy.

The novel coronavirus disease 2019 (COVID-19) pandemic is affecting care for high-risk newborns in ways that will likely be sustained beyond the initial pandemic response. These novel challenges present an urgent imperative to understand how COVID-19 impacts parent, family, and infant outcomes. We highlight three areas that warrant targeted attention: (1) inpatient care: visitation policies, developmental care, and communication practices; (2) outpatient care: high-risk infant follow-up and early intervention programs; and (3) parent psychosocial distress: mental health, social support, and financial toxicity. Changes to care delivery in these areas provide an opportunity to identify and implement novel strategies to provide family-centered care during COVID-19 and beyond. KEY POINTS: · The COVID-19 pandemic is influencing care delivery for high-risk newborns and their families.. · Rapid changes to care delivery are likely to be sustained beyond the initial pandemic response.. · We have an urgent imperative to understand how COVID-19 impacts infant, parent, and family outcomes..

IMPORTANCE: There are limited data on which factors affect the critical and complex decision to withdraw life-supporting treatment (LST) in patients with severe traumatic brain injury (sTBI). OBJECTIVE: To determine demographic and clinical factors associated with the decision to withdraw LST in patients with sTBI. DESIGN, SETTING, AND PARTICIPANTS: This retrospective analysis of inpatient data from more than 825 trauma centers across the US in the American College of Surgeons Trauma Quality Improvement Program database from January 2013 to December 2015 included adult patients with sTBI and documentation of a decision regarding withdrawal of LST (WLST). Data analysis was conducted in September 2019. MAIN OUTCOMES AND MEASURES: Factors associated with WLST in sTBI. RESULTS: A total of 37931 patients (9817 women [25.9%]) were included in the multivariable analysis; 7864 (20.7%) had WLST. Black patients (4806 [13.2%]; odds ratio [OR], 0.66; 95% CI, 0.59-0.72; P

Health-related quality of life (HRQOL) is central to how clinicians and parents make choices about medical care for pediatric neurology patients. To provide parents with the information they need to make these decisions and plan for the future, it is necessary for parents and clinicians to understand how HRQOL is defined and measured in the setting of pediatric neurodevelopmental impairment. We review challenges that exist in measuring HRQOL in pediatric neurology, examine existing measures, and outline key principles to guide selection and interpretation of HRQOL measures in children with neurologic conditions.

Aim To determine whether, and how, neonatal intensive care unit (NICU) parents want to receive early neurodevelopmental screening information about their child's future risk of cerebral palsy and other disabilities. Method This was a qualitative interview study. Parents of hospitalized infants born preterm completed semi-structured interviews. Data were analysed using a directed content analysis approach. Results Thematic saturation was achieved after 19 interviews. Four themes characterized parent perceptions of early neurodevelopmental screening: (1) acceptability: most parents were in favour of neurodevelopmental screening if parents could refuse; (2) disclosure of results: parents want emotional preparation for results, especially false positives; (3) emotional burden of uncertainty: parents of children in the NICU balance taking their infant's illness 'day by day' and preparing for an uncertain future. Parents expressed distress with screening that increased uncertainty about the future; and (4) disability: prior experience with disability informs parent concerns. Interpretation Parents interpret the risks and benefits of NICU developmental screening through the lens of prior experiences with disability. Most expressed interest in screening and emphasized a desire for autonomy, pretest counselling, and emotional preparation. What this paper adds Most parents with infants in the neonatal intensive care unit expressed interest in early screening for developmental disability. Prior experience with disability informed concerns about specific deficits. Parents emphasized a desire for autonomy, pretest counselling, and emotional preparation.