Families as partners in neonatal neuro-critical care programs.

Parents of neonates with neurologic conditions face a specific breadth of emotional, logistical, and social challenges, including difficulties coping with prognostic uncertainty, the need to make complex medical decisions, and navigating new hopes and fears. These challenges place parents in a vulnerable position and at risk of developing mental health issues, which can interfere with bonding and caring for their neonate, as well as compromise their neonate's long-term neurodevelopment. To optimize neurologic and developmental outcomes, emerging neonatal neuro-critical care (NNCC) programs must concurrently attend to the unique needs of the developing newborn brain and of his/her parents. This can only be accomplished by embracing a family-centered care environment-one which prioritizes effective parent-clinician communication, longitudinal parent support, and parents as equitable partners in clinical care. NNCC programs offer a multifaceted approach to critical care for neonates at-risk for neurodevelopmental impairments, integrating expertise in neonatology and neurology. This review highlights evidence-based strategies to guide NNCC programs in developing a family-partnered approach to care, including primary staffing models; staff communication, implicit bias, and cultural competency trainings; comprehensive and tailored caregiver training; single-family rooms; flexible visitation policies; colocalized neonatal and maternal care; uniform mental health screenings; follow-up care referrals; and connections to peer support. IMPACT: Parents of neonates with neurologic conditions are at high-risk for experiencing mental health issues, which can adversely impact the parent-neonate relationship and long-term neurodevelopmental outcomes of their neonates. While guidelines to promote families as partners in the neonatal intensive care unit (NICU) have been developed, no protocols integrate the unique needs of parents in neonatal neurologic populations. A holistic approach that makes families true partners in the care of their neonate with a neurologic condition in the NICU has the potential to improve mental and physical well-being for both parents and neonates.

Supporting Disclosure of Unmet Mental Health Needs among Parents of Critically Ill Infants.

OBJECTIVE: To characterize (1) the prevalence of mental health discussion and (2) facilitators of and barriers to parent disclosure of mental health needs to clinicians. STUDY DESIGN: Parents of infants with neurologic conditions in neonatal and pediatric intensive care units participated in a longitudinal decision-making study from 2018 through 2020. Parents completed semi-structured interviews upon enrollment, within 1 week after a conference with providers, at discharge, and 6 months post-discharge. We used a conventional content analysis approach and NVIVO 12 to analyze data related to mental health. RESULTS: We enrolled 61 parents (n = 40 mothers, n = 21 fathers) of 40 infants with neurologic conditions in the intensive care unit. In total, 123 interviews were conducted with 52 of these parents (n = 37 mothers, n = 15 fathers). Over two-thirds of parents (n = 35/52, 67%) discussed their mental health in a total of 61 interviews. We identified two key domains when approaching the data through the lens of mental health: (1) self-reported barriers to communicating mental health needs: parents shared uncertainty about the presence or benefit of support, a perceived lack of mental health resources and emotional support, and concerns about trust; (2) self-reported facilitators and benefits of communicating mental health needs: parents described the value of supportive team members, connecting to peer support, and speaking to a mental health professional or neutral third party. CONCLUSIONS: Parents of critically ill infants are at high risk of unmet mental health needs. Our results highlight modifiable barriers and actionable facilitators to inform interventions to improve mental health support for parents of critically ill infants.

Prognostic Discordance Among Parents and Physicians Caring for Infants with Neurologic Conditions.

OBJECTIVE: To determine the frequency, degree, and nature of prognostic discordance between parents and physicians caring for infants with neurologic conditions. STUDY DESIGN: In this observational cohort study, we enrolled parents and physicians caring for infants with neurologic conditions in advance of a family conference. Parent-physician dyads completed a postconference survey targeting expected neurologic outcomes across 3 domains (motor, speech, and cognition) using a 6-point scale. Prognostic discordance was defined as a difference of ≥2 response options and was considered moderate (difference of 2-3 response options) or high (difference of 4-5 response options). Responses were categorized as differences in belief and/or differences in understanding using an existing paradigm. RESULTS: Forty parent-physician dyads of 28 infants completed surveys. Parent-physician discordance about prognosis occurred in ≥1 domain in the majority of dyads (n = 28/40, 70%). Discordance was generally moderate in degree (n = 23/28, 82%) and occurred with similar frequency across all domains. Of parent-physician dyads with discordance, the majority contained a difference in understanding in at least 1 domain (n = 25/28, 89%), while a minority contained a difference of belief (n = 6/28, 21%). When discordance was present, parents were typically more optimistic in their predictions compared with physicians (n = 25/28, 89%). CONCLUSIONS: Differing perceptions about the prognosis of critically ill infants are common and due to differences in both understanding and belief. These findings can be used to develop targeted interventions to improve prognostic communication.

Prognostic Discussion for Infants with Neurologic Conditions: Qualitative Analysis of Family Conferences.

OBJECTIVE: We characterize the content and role of prognostic discussion for infants with neurologic conditions. METHODS: 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. RESULTS: 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. INTERPRETATION: 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.

The association of placental pathology and neurodevelopmental outcomes in patients with neonatal encephalopathy.

BACKGROUND: Studies conflict on how acute versus chronic placental pathology impacts outcomes after neonatal encephalopathy from presumed hypoxic-ischemic encephalopathy (HIE). We examine how outcomes after presumed HIE vary by placental pathology categories. METHODS: We performed retrospective chart review for neonates with presumed HIE, regardless of severity, focusing on 50 triads for whom placental specimens were available for re-review. Placentas were categorized as having only acute, any chronic, or no lesions. Primary outcomes included in-hospital morbidity/mortality and long-term neurodevelopmental symptoms. Secondary outcomes assessed neonatal MRI and EEG. RESULTS: Demographics did not differ between groups. Forty-seven neonates were treated with therapeutic hypothermia. Placental acuity category was not associated with primary or secondary outcomes, but clinical and/or histopathological chorioamnionitis was associated with abnormal EEG background and post-neonatal epilepsy (16.7%, n = 3 with chorioamnionitis versus 0%, n = 0 without chorioamnionitis, p = 0.04). CONCLUSIONS: When grouped by acute, chronic, or absent placental lesions, we observed no association with in-hospital, neurodevelopmental, MRI, or EEG outcomes. When reanalyzed by the presence of chorioamnionitis, we found that chorioamnionitis appeared to be associated with a higher risk of EEG alterations and post-neonatal epilepsy. Despite our limited sample size, our results emphasize the critical role of placental examination for neuroprognostication in presumed HIE. IMPACT: Neonatal encephalopathy presumed to result from impaired fetal cerebral oxygenation or blood flow is called hypoxic ischemic encephalopathy (HIE). Prior studies link placental pathology to various outcomes after HIE but disagree on the impact of acute versus chronic pathology. Our study determines that neurodevelopmental outcomes, in-hospital outcomes, injury on MRI, and EEG findings in patients with HIE are not differentially associated with acute versus chronic placental pathology. Chorioamnionitis is associated with an increased risk of abnormal EEG patterns and post-neonatal epilepsy. Histopathologic chorioamnionitis without clinical symptoms is common in HIE, emphasizing the crucial role of placental pathology for neuroprognostication.

Navigating prognostic communication when children with poor-prognosis cancer experience prolonged disease stability.

BACKGROUND: 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. PATIENTS AND METHODS: 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. RESULTS: Prognostic communication was absent in >50% 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. CONCLUSIONS: 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.

The Role of Perinatal Palliative Care in Fetal Neurology.

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: This study is a 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..

Decisional Satisfaction, Regret, and Conflict Among Parents of Infants with Neurologic Conditions.

OBJECTIVE: 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 an FS-ICU score ≥75, high decisional regret/conflict as DRS/DCS score >25, and within-couple disagreement as a difference of at least 25 points between scores. RESULTS: We enrolled 61 parents of 40 infants (n = 40 mothers, n = 21 fathers); 35 mothers and 15 fathers completed surveys. Most mothers reported high satisfaction with decision making (27 of 35; 77%) and low decision regret (28 of 35; 80%); 40% (14 of 35) reported high decisional conflict. Mothers and fathers reported higher decisional conflict in the domains of uncertainty and values clarity compared with the domain of effective decision making (Bonferroni-corrected P < .05). There were no differences in decision outcomes between paired mothers and fathers; however, within any given couple, there were numerous instances of disagreement (7 of 15 for decision regret and 5 of 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.

Characteristics of Neonates with Cardiopulmonary Disease Who Experience Seizures: A Multicenter Study.

OBJECTIVE: To compare key seizure and outcome characteristics between neonates with and without cardiopulmonary disease. STUDY DESIGN: The 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. RESULTS: We 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 < .001) and experience their first seizure later than those without cardiopulmonary disease (174 vs 21 hours of age, P < .001), but they had similar seizure exposure (many-recurrent electrographic seizures 39% vs 43%, P = .27). Phenobarbital was the primary initial antiseizure medication for both groups (90%), and both groups had similarly high rates of incomplete response to initial antiseizure medication administration (66% vs 68%, P = .75). Neonates with cardiopulmonary disease were discharged from the hospital later (hazard ratio 0.34, 95% CI 0.25-0.45, P < .001), although rates of in-hospital mortality were similar between the groups (hazard ratio 1.13, 95% CI 0.66-1.94, P = .64). CONCLUSION: Neonates with and without cardiopulmonary disease had a similarly high seizure exposure, but neonates with cardiopulmonary disease were more likely to experience EEG-only seizures and had seizure onset later in the clinical course. Phenobarbital was the most common seizure treatment, but seizures were often refractory to initial antiseizure medication. These data support guidelines recommending continuous EEG in neonates with cardiopulmonary disease and indicate a need for optimized therapeutic strategies.

Beyond pain control: Outcome and treatment preferences in pediatric migraine.

OBJECTIVE: The objective of this study was 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 ages and headache frequency. Patients with migraine and their caregivers completed semistructured 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 and n = 30 caregiver interviews). Three themes emerged. (1) Symptom relief: Looking beyond headache resolution: Participants described the value of 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.

Diagnostic preferences include discussion of etiology for adults with cerebral palsy and their caregivers.

AIM: To determine the views of individuals with cerebral palsy (CP) and their caregivers (CP community members) about carrying a CP diagnosis, an etiological diagnosis, or both diagnoses together. METHOD: We surveyed CP community members across two registries querying their views on carrying a CP diagnosis, one type of etiological diagnosis (specifically, a genetic diagnosis), or both. Open-ended responses were analyzed using a conventional content analysis approach. RESULTS: Of 197 respondents (108 adults with CP and 89 caregivers), most (75%) valued knowing the cause of their CP. Of those with a diagnostic preference, most preferred carrying both CP and etiological diagnoses together (68%). When compared with carrying an etiological diagnosis alone, significantly more respondents felt a CP diagnosis helped anticipate symptom evolution (84% vs 54%), explain symptoms to others (86% vs 48%), access services (86% vs 48%), and join support communities (78% vs 50%) (p <  0.01, χ2 test). INTERPRETATION: Most CP community members surveyed want to know the cause of their CP and would prefer carrying both CP and etiological diagnoses together. Clinical practice should evolve to meet these community needs.

Palliative Care Consultations in Patients with Severe Traumatic Brain Injury: Who Receives Palliative Care Consultations and What Does that Mean for Utilization?

BACKGROUND: 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 patients with sTBI 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 health care resource utilization between patients with or without PCEs. METHODS: The National Inpatient Sample database was queried for patients age ≥ 18 who had a diagnosis of sTBI, defined by using International Classification of Diseases, 9th Revision codes. PCEs were defined by using International Classification of Diseases, 9th Revision code V66.7 and trended from 2001 to 2015. To assess factors associated with PCE in patients with sTBI, 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. RESULTS: From 2001 to 2015, the proportion of palliative care usage in patients with sTBI increased from 1.5 to 36.3%, with 41.6% White, 22.3% Black, and 25% Hispanic patients with sTBI having a palliative care consultation in 2015, respectively. From 2008 to 2015, we identified 17,673 sTBI admissions. White and affluent patients were more likely to have a PCE than Black, Hispanic, and low socioeconomic status 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 than Black patients. Patients using palliative care had lower total hospital costs (median $16,368 vs. $26,442, respectively). 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 the use of a PEG tube if they have had a PCE.

Isolated and On Guard: Preparing Neonatal Intensive Care Unit Families for Life with Hydrocephalus.

OBJECTIVE: 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. STUDY DESIGN: 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. RESULTS: 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. CONCLUSION: 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. KEY POINTS: · 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..

Communication around palliative care principles and advance care planning between oncologists, children with advancing cancer and families.

BACKGROUND: In medical oncology, palliative care principles and advance care planning are often discussed later in illness, limiting time for conversations to guide goal-concordant care. In pediatric oncology, the frequency, timing and content of communication about palliative care principles and advance care planning remains understudied. METHODS: We audio-recorded serial disease re-evaluation conversations between oncologists, children with advancing cancer and their families across the illness trajectory until death or 24 months from last disease progression. Content analysis was conducted to determine topic frequencies, timing and communication approaches. RESULTS: One hundred forty one disease re-evaluation discussions were audio-recorded for 17 patient-parent dyads with advancing cancer. From 2400 min of recorded dialogue, 119 min (4.8%) included discussion about palliative care principles or advance care planning. Most of this dialogue occurred after frank disease progression. Content analysis revealed distinct communication approaches for navigating discussions around goals of care, quality of life, comfort and consideration of limiting invasive interventions. CONCLUSIONS: Palliative care principles are discussed infrequently across evolving illness for children with progressive cancer. Communication strategies for navigating these conversations can inform development of educational and clinical interventions to encourage earlier dialogue about palliative care principles and advance care planning for children with high-risk cancer and their families.

Early-life epilepsy after acute symptomatic neonatal seizures: A prospective multicenter study.

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.

Broaching goals-of-care conversations in advancing pediatric cancer.

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.

Addressing the Social Determinants of Health During the COVID-19 Pandemic: Ensuring Equity, Quality, and Sustainability.

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.

Risk for infantile spasms after acute symptomatic neonatal seizures.

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.

Parent preferences for neurodevelopmental screening in the neonatal intensive care unit.

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.

Beyond the First Wave: Consequences of COVID-19 on High-Risk Infants and Families.

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..