Implementation of Universal Screening for G6PD Deficiency in Newborns.

We describe the implementation of universal glucose-6-phosphate dehydrogenase (G6PD) screening during the first year of New York State mandated testing, as well as operational challenges and clinical knowledge gained. All infants born at or transferred to our center between June 21, 2022 and June 30, 2023, underwent testing for G6PD enzyme deficiency and were included in the study cohort. Infant blood samples were collected and sent to a reference laboratory for quantitative assay. After initiation of universal screening, a quality improvement initiative was launched to:monitor and improve the suitability of blood sample collection to ensure timely return of results;improve the reliability and validity of the reference laboratory enzyme assay; andestablish accurate reference ranges for G6PD deficiency in newborns.A total of 5601 newborns were included. Within the first year of implementation, the percentage of samples yielding any test result increased from 76% to 85%, and most patients had a G6PD result available within 1 day of discharge. We established a more accurate threshold for G6PD deficiency in newborns of <4.9 U/g Hb and G6PD intermediate of <10.0 U/g Hb. Using the updated reference ranges, 224 patients in our cohort were identified as G6PD deficient or intermediate (4.0%). Through a quality-sensitive process, we identified the importance of a standardized approach, improved sample collection processes, decreased sample turnaround time, and established more accurate reference ranges. We hope our experiences will help others seeking to improve processes and implement similar programs at other institutions.

NeoTalk: Communication Skills Training for Neonatal Clinicians.

BACKGROUND: Despite proven benefit, pediatric subspecialists often have not been offered formal serious illness communication skills training. We sought to: 1) develop and evaluate the impact of a communication skills course, based on the VitalTalk framework, on Neonatal Intensive Care Unit (NICU) clinicians; 2) evaluate provider comfort with key serious illness communication skills and frequency of use of those skills, before and after "NeoTalk" and; 3) explore differences and similarities between adult and pediatric serious illness communication skills courses. METHODS: We developed a NICU specific communication skills course and surveyed course participants to evaluate comfort with key communication skills before and after course participation, and frequency of use of key skills before and 2 months after our course. Wilcoxon signed rank tests and Kruskal-Wallis tests were performed to compare participant responses across time points. RESULTS: 34 providers completed NeoTalk training. Complete pre- and post-course data was available for 29 participants. Participants reported increased comfort with skills including 'sharing difficult news' (P = .018), and 'responding to emotion' (P = .002). Participants did not report increased frequency in using target skills 2 months after training. CONCLUSIONS: A multi-disciplinary cohort of NICU providers endorsed increased confidence in key communication skills but not increased skill application 2-months post-course completion. While a single course can successfully teach skills, additional exposure may be necessary to build new communication habits. Our experience developing NeoTalk helped elucidate some of the ways in which conversations about seriously ill infants may be different from conversations about seriously ill adults.

PedsTalk: A Pilot Communication Skills Education Course for Pediatric Residents.

OBJECTIVE: Communication skills are critical to pediatric practice, but few pediatric residency programs provide formal communication skills education. Pediatric residents often lack confidence in these skills. We hypothesized that a simulation-based communication skills course would improve resident confidence in the skills required for serious illness conversations with patients/families. METHODS: In collaboration with multidiscipline VitalTalk-trained faculty, we developed PedsTalk, a communication skills course for pediatric residents based on the VitalTalk framework. In PedsTalk, faculty/peers offered real-time coaching during simulation sessions with actors. Resident participants self-rated confidence in 9 communication skills using a 5-point Likert scale before, immediately after, and 4 months after course participation, with course nonparticipants serving as controls. Responses were analyzed by using Friedman tests and Wilcoxon rank tests. Thematic analysis was conducted to identify themes among free-text responses. RESULTS: Twenty-seven pediatric residents participated in PedsTalk, 11 of whom completed survey assessments at all timepoints. Eleven course nonparticipants served as controls. Over time, participants' confidence in the following communication skills was retained or significantly improved: "difficult conversations" (P < .001), "recognizing emotion" (P < .01), "using silence" (P < .008), "headline statements" (P < .001), eliciting "VALUES" (P < .001), and asking "permission to continue" (P < .001). Over time, controls had significant improvements in confidence in 2 skills: headline statements (P < .014) and eliciting "VALUES" (P < .031). CONCLUSIONS: PedsTalk is a novel approach to communication skills education in pediatric residency. Participation improved residents' confidence in 6 communication skills, including overall confidence in having difficult conversations. Although confidence in some skills may naturally develop through clinical experiences, PedsTalk further enhances communication skills education among trainees.

Neonatal serious illness: operational definition.

OBJECTIVES: (1) To operationalise our previously published definition of neonatal serious illness by applying it to a patient cohort and (2) to evaluate timing of palliative care consultation, goals of care discussions and meeting serious illness criteria. METHODS: This was a retrospective chart review. Inborn neonates delivered between January 2006 and December 2020 who died prior to neonatal intensive care unit discharge were identified through EPIC query. Kruskal-Wallis and Mann-Whitney-U tests were used to compare time intervals relating to transition to serious illness across causes of death and other factors. χ2 tests were used to examine frequency of goals of care conversations by factors. RESULTS: Eighty-eight per cent of patients met criteria for neonatal serious illness within 48 hours of life. There were no significant differences in transition to serious illness between preterm and term infants. Time to identification of serious illness varied significantly by cause of death. Palliative care was consulted for 5.7% of patients. CONCLUSION: All patients met criteria for serious illness early in life based on our definition. This definition may be useful for identifying neonates with serious illness in time to provide support. Additional work is needed to apply this definition prospectively to explore its utility for clinical care and research.

Parent Perspectives on Defining Neonatal Serious Illness.

Objectives: We hoped to understand (1) how parents of seriously ill neonatal intensive care unit patients conceptualize neonatal serious illness, and (2) how parent and physician perspectives on neonatal serious illness might differ. Design: This was a prospective survey study. Setting/Subjects: Parent members of the Courageous Parents Network. Measurements: We circulated a modified version of a previously developed survey. Participants were presented with a list of potential definition components and asked to rank components by importance and suggest modifications to the definition as needed. Thematic analysis of free-text responses was conducted to identify key themes in parent responses Results: Eighty-eight percent of parent participants agreed or strongly agreed with our working definition of neonatal serious illness. Parents agreed with the content of the definition but suggested using different language (especially less jargon) when using the definition to inform conversations with parents. Conclusions: The majority of parents surveyed for this study supported our definition of neonatal serious illness, which suggests that it may be useful for clinical and research applications. At the same time, parent responses revealed important differences in perceptions about serious illness between parents and physicians. In addition, parents will likely use any definition of neonatal serious illness differently than clinicians. We therefore propose that our definition be used to identify neonates with serious illness for the purposes of research and clinical care, but should not be used verbatim for communication with parents.

A cross-sectional analysis of compassion fatigue, burnout, and compassion satisfaction in maternal-fetal medicine physicians in the United States.

BACKGROUND: Compassion fatigue is secondary traumatic distress experienced by providers from ongoing contact with patients who are suffering. Compassion satisfaction is emotional fulfillment from caring for others. Burnout is distress related to dissonance between job demands and available resources. Although burnout is well-studied, compassion satisfaction and compassion fatigue are neglected components of physician well-being. Because of recurrent exposure to adverse outcomes, maternal-fetal medicine providers may be at particular risk for compassion fatigue. OBJECTIVE: This study aimed to better characterize both clinical and nonclinical drivers of work-related distress vs satisfaction. STUDY DESIGN: The modified Compassion Fatigue and Satisfaction Self-Test and a questionnaire of professional and personal characteristics were distributed electronically to maternal-fetal medicine providers nationally. Multivariable regression models were constructed for compassion fatigue, burnout, and compassion satisfaction as a function of potential predictors. RESULTS: The survey response rate was 24% (n=366), primarily consisting of White physicians working in academic medical centers. Significant predictors of lower burnout scores included employment at 1 institution for >20 years, discussing work-related distress with friends, and having one's most recent involvement in decision-making for a periviable fetus >6 months ago; distress because of coworkers and personal factors predicted higher scores. Female sex, self-report of significant emotional depletion, use of mental health services, and having other maternal-fetal medicine physicians as part of the care team for a fetus with severe anomalies were significant predictors of higher compassion fatigue scores, whereas White race and having social work as part of the care team for a maternal mortality predicted lower scores. Personal spiritual practice was a significant predictor of higher compassion satisfaction score, whereas employment at current institution for <5 years predicted lower scores. CONCLUSION: Compassion fatigue, compassion satisfaction, and burnout are associated with several modifiable risk factors, such as practice type, having a multidisciplinary team, and emotional support outside of the workplace; these are potential targets for intervention.

Defining Neonatal Serious Illness: Perspectives of Nurses and Social Workers.

Objectives: To explore (1) how neonatal nurses (NN) and social workers (SW) define serious illness and (2) how physician, nurse, and SW perceptions of serious illness differ. Design: Prospective survey study. Setting/Subjects: Members of the National Association of Neonatal Nurses or the National Association of Perinatal Social Workers. Measurements: We circulated a modified version of a previously developed survey. Participants were given a list of definition components and asked to rank components by importance and to suggest modifications. Results: Eighty-eight percent of participants agreed with our definition of neonatal serious illness. NN and SW differ in important ways in their views of neonatal serious illness when compared with physicians and parents. Conclusions: Our definition of neonatal serious illness has broad acceptability and may be useful for clinical care and research. Future work should prospectively identify patients with neonatal serious illness and establish the usefulness of our definition in real time.

Impact of the SARS-CoV-2 pandemic on pediatric subspecialists' well-being and perception of workplace value.

OBJECTIVE: To explore pediatric subspecialist distress and well-being during the pandemic, with a particular focus on relationships between compassion fatigue (CF), burnout (BO), and compassion satisfaction (CS), and physicians' perception of "feeling valued" by their institution. METHODS: The Compassion Fatigue and Satisfaction Self-Test and a questionnaire of personal/professional characteristics were distributed electronically to pediatric subspecialists. Content analysis was performed for responses to the question "How has your institution made you feel valued?" RESULTS: During the 16-month study period, CF and BO scores significantly increased, and CS scores decreased over time. By Epoch 3, 52% of respondents did not feel valued by their employing institution. When controlling for the effect of time, CF and BO scores remained higher, and CS scores lower, in participants who did not feel valued by their institution. Themes from the content analysis of "value" included expressions of gratitude, perks vs. penalties, safety, and leadership. The same overture from leadership provoked disparate responses in recipients, seemingly over the sincerity behind the offering, which may reflect underlying workplace culture. CONCLUSIONS: Increasingly, pediatric subspecialists are not feeling valued for their work. Institutional leadership must prioritize healthy workplace culture, and re-think emotional and mental health support within the health system. IMPACT: A total of 52% of our study population did not "feel valued" by their employing institution by late 2021, which is cause for concern. This is the first longitudinal analysis of distress and well-being in a national cohort of pediatric subspecialists during the COVID-19 pandemic. The same overture or messaging from leadership sparked disparate responses in recipients, seemingly over the sincerity behind the offering, which relates to the underlying workplace culture of the department or institution. Institutional leadership must prioritize a healthy workplace culture, and re-think and re-invent emotional and mental health support within the health system.

Federal regulations and neonatologists' views on care of seriously ill infants: changes over time.

BACKGROUND: The Baby Doe Regulations (BDR) regulate provision of life-sustaining treatment to seriously ill neonates. In 2020, the Trump administration expanded upon these through the Executive Order on Protecting Vulnerable Newborn and Infant Children (EO-PVNIC). Neonatologists were surveyed in 1988 to determine their opinions on the regulations. We sought to compare views of neonatologists from 1988 and 2021 in relation to three hypothetical cases and about the impact of the BDR and to evaluate perceptions of the EO-PVNIC. METHODS: We modified and distributed the 1988 survey to members of the American Academy of Pediatrics Section on Neonatal Perinatal Medicine. We used Chi-squared tests to compare responses in 1988 to responses in 2021. RESULTS: We received 445 survey responses. Neonatologists today felt less compelled to provide aggressive care to the hypothetical patients, felt less constrained by the regulations, and were more likely to report that parental wishes would impact their actions. CONCLUSIONS: There have been shifts in neonatologists' perceptions of the Baby Doe Regulations toward less aggressive medical treatment for seriously ill neonates and more shared decision-making. Further research is required to identify how practices have been impacted over these decades. IMPACT: Neonatologists in the 1980s largely objected to the Baby Doe regulations, fearing the regulations would restrict their ability to provide optimal care to seriously ill neonates. Though still in place, current perceptions of these and newer regulations are unknown. Perspectives on the Baby Doe regulations have changed since their enactment and with the addition of newer, more restrictive regulations. Neonatologists today may favor less aggressive management in the face of poor prognosis. Neonatologists may also favor more shared decision-making now as compared to the past.

Defining Neonatal Serious Illness.

Background: One major challenge to the conduct of rigorous neonatal palliative care research is the lack of robust universally agreed upon definitions of key concepts central to pediatric and neonatal palliative care. Objective: We sought to define neonatal serious illness as a foundational concept for neonatal palliative care. Design: Survey study. Setting/Subjects: Practitioners in the United States with expertise in neonatal serious illness. Measurements: Participants ranked 15 components according to how important each would be to include in a conceptual definition of neonatal serious illness. Based on rankings and free text responses, a working definition was created and a follow-up survey was circulated. Participants then ranked the extent to which the proposed definition comprehensively defines neonatal serious illness. The definition was further refined based on responses to the second survey. Results: Eighty experts responded to our first survey. Definition components ranked as most important included "high risk of short term mortality" and "results in shortened lifespan." Analysis of free text responses revealed additional components viewed as important. We developed the following conceptual definition: "Neonatal serious illness 1) carries a high risk of short term mortality OR lifelong medical complexity with probable shortened lifespan, 2) may involve substantial prognostic uncertainty (especially in regard to neurodevelopment) that complicates medical decision-making, and 3) significantly impacts the patient and family's life now or in the future with strain related to treatments and care." Conclusion: We believe our definition of neonatal serious illness will facilitate future study essential to the advancement of care for this population.

Compassion fatigue, burnout, and compassion satisfaction in pediatric subspecialists during the SARS-CoV-2 pandemic.

BACKGROUND: The aim of this study was to explore factors contributing to compassion fatigue (CF), burnout (BO), and compassion satisfaction (CS) during the severe acute respiratory syndrome coronavirus-2 pandemic in pediatric subspecialists. METHODS: The Compassion Fatigue and Satisfaction Self-Test (CFST) and a questionnaire of personal/professional characteristics were distributed electronically to pediatric subspecialists. RESULTS: There were no significant differences in pre- and early-pandemic CF, BO, and CS scores. Nearly 40% of respondents felt their contributions to the pandemic were not valued by their institutions. Higher CF scores were significantly associated with: higher BO score; "I have put myself at increased risk through my work"; working in one's specialty >50% of time; distress about mental health and/or future uncertainty. Higher BO scores were significantly associated with: higher CF score; "Self-care is not a priority"; emotional depletion. Higher CS scores were significantly associated with: "My institution values my contribution to the COVID-19 crisis"; workplace debriefs; pet therapy. CONCLUSIONS: The pandemic has only increased the need for physicians to receive social/emotional support from their institution and to feel their workplace contributions are valued. Successful pre-pandemic workplace interventions may not adequately support physicians during the pandemic. Further study is needed to identify supports that best counter the pandemic's unprecedented challenges. IMPACT: The sentiment "My institution has valued my contribution to the Covid-19 crisis" was the only significant factor associated with lower BO scores and was also associated with higher CS scores in pediatric subspecialists. This study is the first comparison of pre- and early-pandemic CF, BO, and CS scores in a national cohort of pediatric subspecialists. When considering interventions to promote CS and mitigate CF and BO for pediatric subspecialists during and after the pandemic, institutional leadership must offer wellness programming focused on social/emotional supports and prioritize a culture that explicitly recognizes and values every physician's contributions.

Trends in length of stay for Neonatal Intensive Care Unit patients who die before hospital discharge.

OBJECTIVES: The objectives of this study were to establish days between birth and death for neonates over a 14-year period, determine if days between birth and death have changed over time across gestational age cohorts, and identify diagnoses which may put infants at high risk of prolonged hospitalization leading to death. STUDY DESIGN: This was a single-site, retrospective chart review of inborn infants who died prior to hospital discharge. RESULTS: Two hundred and thirty-nine patients born between 1/1/2006 and 12/31/2020 met inclusion criteria. Days until death ranged from 0 to 300 with a median of 6 days (interquartile range = 23). Median days until death increased over time, with a statistically significant increase between epoch 1 and epoch 2 (p = 0.016) but not between epoch 2 and epoch 3 (p = 0.618). Extremely premature infants died earlier than more mature infants (p < 0.001). In addition, infants with complex congenital heart disease or a gastrointestinal (GI) catastrophe died later (p < 0.001 and p < 0.001, respectively) than newborns without cardiac or GI issues. CONCLUSIONS: Our findings demonstrate an increase in time to death for newborns who did not survive to hospital discharge over a 14-year period. This trend suggests that the dynamics informing Meadows' assertion that "doomed infants die early" may be shifting, with some seriously ill infants who die before hospital discharge surviving longer than previously described. More research is needed to understand how best to care for babies who will not survive to discharge and to explore when supports such as palliative care consultation may be beneficial. KEY POINTS: As per W. Meadow, "Doomed infants die early" · Pre-death length of stay varies with diagnosis.. · Some seriously ill infants who die before hospital discharge are no longer dying early.. · These infants and families may need supports..

Renal insufficiency in children born preterm: examining the role of neonatal acute kidney injury.

OBJECTIVE: To identify the prevalence of renal insufficiency (RI) in children with a history of prematurity and acute kidney injury (AKI). STUDY DESIGN: This prospective cohort study evaluated renal function in children born preterm at 5-9 years of age. Univariable analyses compared perinatal and follow-up data from subjects with and without AKI history, and with and without current RI. Regression analyses were attempted to model RI as a function of AKI and other clinical risk factors. RESULTS: Fifteen of 43 (35%) participants had previously undiagnosed RI. Only children with no AKI history or neonatal stage 1 AKI presented for follow-up. Children born preterm with a history of stage 1 AKI had higher serum creatinine (sCr) at follow-up, but were not more likely to have RI compared to children without stage 1 AKI history (RI prevalence 30% and 36% in AKI and non-AKI group, respectively). CONCLUSION: The high prevalence of RI in this preterm cohort at middle childhood follow-up highlights the need for routine kidney health assessments in this population. Large multicenter studies are needed to further characterize the impact of premature birth and mild AKI on renal function throughout childhood.

A cross-sectional analysis of compassion fatigue, burnout, and compassion satisfaction in pediatric surgeons in the U.S.

BACKGROUND/PURPOSE: To determine the prevalence of compassion fatigue (CF), burnout (BO), and compassion satisfaction (CS) and identify potential predictors of these phenomena in pediatric surgeons. METHODS: The Compassion Fatigue and Satisfaction Self-Test and a survey of personal/professional characteristics were distributed electronically to American Pediatric Surgical Association members. Linear regression models for CF, BO, and CS as a function of potential risk factors were constructed. RESULTS: The analyzeable study response rate was 25.7%. The prevalence of CF, BO, and CS was 22%, 24% and 22, respectively, which were similar to prevalences previously identified in pediatric subspecialists. Higher CF scores were significantly associated with: higher BO scores; solo practice; compensation; ≥5 operating days/week; current distress about a 'clinical situation'; mental health-care for work-related distress; and history of childhood surgery. Lower CF scores were significantly associated with 'talking with a life partner' about work-related distress. Higher BO scores were significantly associated with: higher CF scores; current distress about 'coworkers'; and 'keeping lawsuits confidential'. Lower BO scores were significantly associated with higher CS scores. CONCLUSIONS: CF, BO, and CS are distinct but highly related entities. Pediatric surgeons experience these phenomena at similar rates to other pediatric subspecialists. Establishing local channels for physician peer support may be particularly impactful.

Supporting recovery after adverse events: An essential component of surgeon well-being.

BACKGROUND: Failure to recover after a medical error is a major contributor to burnout. The degree to which pediatric surgeons experience errors and the barriers and facilitators to successful recovery are largely unknown. METHODS: We conducted a survey of American Pediatric Surgical Association (APSA) members to measure frequency of personal experience with medical errors resulting in significant patient harm, describe coping mechanisms, and explore surgeon satisfaction with institutional support in the wake of an error. RESULTS: We found that 80% of respondents have personally experienced a medical error resulting in significant patient harm or death, and that only about one-quarter were satisfied with the support provided by their institution. Only 11% of surgeons would prefer not to be contacted after an adverse event, and most would want to be contacted by their partners. Barriers to providing and receiving support included lack of knowledge, "shame and blame" culture, and lack of trust in the institution as an ally. CONCLUSIONS: Pediatric surgeons routinely experience intense and stressful clinical scenarios and face challenging paths to recovery after adverse events. Institutions and national societies can play a critical role in creating infrastructure to help surgeons recover, in order to prevent burnout and promote well-being.

Drivers of distress and well-being amongst pediatric surgeons.

INTRODUCTION: Although pediatric surgeons have lower rates of burnout compared to other surgical subspecialists, they still struggle with work-home conflict, depersonalization, and emotional exhaustion. Prior surveys have measured career satisfaction and burnout, but none have identified factors that contribute to physician well-being or provided potential solutions. METHODS: Members of the American Pediatric Surgical Association were surveyed regarding sources of distress and institutional practices intended to promote well-being. Responses were analyzed using content analysis. RESULTS: There was a 31.5% response rate to the survey. The most frequently cited sources of distress were administrative issues (45.2%), work/life balance (42.3%), personal issues (18.8%), and relationships with coworkers (17.9%). In open-ended questions, other sources of distress included poor leadership, loss of autonomy, lack of support and mentorship, and patient complications. Successful wellness strategies included relief from clinical burden, substantive wellness programming, surgeon inclusion in administrative decision making, support after adverse events, appropriate compensation and benefits, and opportunities for career development in research, teaching, and clinical care. CONCLUSION: Pediatric surgeons are affected by multiple sources of distress. Interventions that ameliorate stress in pediatric surgeons were identified and should be considered by local institutions and national organizations to promote well-being. LEVEL OF EVIDENCE: n/a.

A pilot study exploring interventions for physician distress in pediatric subspecialists.

BACKGROUND: While institution-sponsored wellness programs may be effective, little is known about their availability and utilization in pediatric subspecialists, and about programs physicians wish were available. METHODS: A survey of perceptions about, and availability and utilization of institutional wellness activities, was distributed electronically to pediatric subspecialists nationally. Bivariate analyses were performed using χ2 tests or independent t tests. Multivariable logistic regression models for categories of institution-sponsored programming as a function of potential predictors of program utilization were performed. Qualitative content analysis was performed for free-text survey answers. RESULTS: Approximately 60% of respondents participated in institution-sponsored wellness opportunities. Debriefs, Schwartz Center Rounds, mental health services, and team building events were the most available institution-sponsored wellness activities, whereas debriefs, team building, Schwartz Center Rounds, and pet therapy were most frequently utilized. Respondents desired greater social/emotional support, improved leadership, enhanced organizational support, and modifications to the physical work environment, with no significant differences across subspecialties for "wish list" items. CONCLUSIONS: Physician wellness requires more than a "one-size-fits-all" initiative. Our data highlight the importance of encouraging and normalizing self-care practices, and of listening to what physicians articulate about their needs. Pre-implementation needs assessment allows a "bottom-up" approach where physician voices can be heard.

A Cross-sectional Analysis of Compassion Fatigue, Burnout, and Compassion Satisfaction in Pediatric Hematology-Oncology Physicians in the United States.

Compassion fatigue (CF), burnout (BO), and compassion satisfaction (CS) are interrelated phenomena that impact personal and professional performance. The CF and Satisfaction Self-Test and a demographic questionnaire were distributed electronically to pediatric hematology-oncology physicians nationally. Linear regression models for CF, BO, and CS as a function of potential predictors were constructed. Survey response rate was 28%. Female sex, BO score, distress about a "clinical situation," and "teaching" were associated with higher CF scores. "Administrative activities" were associated with lower CF scores. CF score, and distress about "administrative burden/academic stress" and "coworkers" were associated with higher BO scores. CS score and "socializing" were associated with lower BO scores. "Exercise," "socializing," and "talking with partner" were associated with higher CS scores. CF and BO scores, emotional depletion, and distress about the "work environment" and "administrative/academic burden" were associated with lower CS scores. Our data highlights the importance of strong social connections at work and at home to decrease BO and enhance CS. Professional development in leadership, communication, and conflict resolution, as well as "team building" events may perpetuate coworker relationships. Education about the importance of connectedness and self-care should begin early in medical education to cultivate robust coping mechanisms in trainees.