Parents' Experiences Caring for a Child after a Critical Illness: A Qualitative Study.

Objectives This article described parents' experience and identifies outcomes important to parents following their child's critical illness. Methods Semistructured interviews with 22 female and 4 male parents representing 26 critically ill children with predominately neurologic and respiratory diagnoses. Most children were younger than 5 years at discharge with a median (interquartile range) of 2 (2.0-3.0) years from discharge to interview. Results Many children returned home with life-altering physical and cognitive disabilities requiring months to years of rehabilitation. Parents remembered feeling unprepared and facing an intense, chaotic time when the child first returned home. They described how they suddenly had to center their daily activities around the child's needs amidst competing needs of siblings and partners, and in some cases, the medicalization of the home. They recounted negotiating adjustments almost daily with insurance agencies, medical doctors and therapists, employers, the child, and other family members to keep the family functioning. In the long term, families developed a new norm, choosing to focus on what the child could still do rather than what they could not. Even if the child returned to baseline, parents remembered the adjustments made to keep the child alive and the family functioning. Conclusion Heightened awareness of family experiences after pediatric critical illness will allow health care providers to improve family preparedness for the transition from hospital to home.

Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease.

Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC referral at the time of heart disease diagnosis provides early involvement in the disease trajectory, allowing PPC teams to longitudinally support patients and families with symptom management, complex medical decision-making, and advanced care planning. We analyzed 113 hospitalized pediatric patients with a primary diagnosis of heart disease and a PPC consult to identify timing of first PPC consultation in relation to diagnosis, complex chronic conditions (CCC), and death. The median age of heart disease diagnosis was 0 days with a median of two CCCs while PPC consultation did not occur until a median age of 77 days with a median of four CCCs. Median time between PPC consult and death was 33 days (interquartile range: 7-128). Death often occurred in the intensive care unit ( n = 36, 67%), and the most common mode was withdrawal of life-sustaining therapies ( n = 31, 57%). PPC referral often occurred in the context of medical complexity and prolonged hospitalization. Referral close to the time of heart disease diagnosis would allow patients and families to fully utilize PPC benefits that exist outside of end-of-life care and may influence the mode and location of death. PPC consultation should be considered at the time of heart disease diagnosis, especially in neonates and infants with CCCs.

Supporting families during pediatric critical illness: Opportunities identified in a multicenter, qualitative study.

Critical illness resulting in a pediatric intensive care unit (PICU) admission is a profoundly stressful experience for a child and their family. Increasing evidence for emotional and behavioral sequelae post-PICU emphasizes a need to provide better support for families throughout this period of care and recovery. The aim of this qualitative investigation was to identify salient and modifiable aspects of a critical care experience that can be addressed to better support families of critically ill children. Individual semi-structured interviews were conducted with 26 caregivers of children who survived a PICU admission. Interviews were audio-recorded and transcribed verbatim; themes were identified via thematic analysis. Caregivers were enrolled using convenience sampling from seven tertiary care PICUs in the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. Themes from caregiver interviews were identified within two overarching categories containing three themes each. Advice for future PICU families: (1) Be intentional about caring for your own well-being, (2) speak up, ask questions, and challenge decisions you're not comfortable with, and (3) continue to engage with your child. Characteristics of a satisfactory PICU experience: (1) A caregiver-provider relationship of mutual trust established through clear communication and respectful collaboration, (2) hospital environments that provide physical and social supports to maintain humanity in healthcare, and (3) preparing families for care transitions. Targeted, interdisciplinary approaches to partner with families during critical care may improve their PICU experience and contribute to improved long-term outcomes for PICU survivors.

Extracorporeal membrane oxygenation and paediatric palliative care in an ICU.

OBJECTIVES: Compare rates, clinical characteristics, and outcomes of paediatric palliative care consultation in children supported on extracorporeal membrane oxygenation admitted to a single-centre 16-bed cardiac or a 28-bed paediatric ICU. METHODS: Retrospective review of clinical characteristics and outcomes of children (aged 0-21 years) supported on extracorporeal membrane oxygenation between January, 2017 and December, 2019 compared by palliative care consultation. MEASUREMENTS AND RESULTS: One hundred children (N = 100) were supported with extracorporeal membrane oxygenation; 19% received a palliative care consult. Compared to non-consulted children, consulted children had higher disease severity measured by higher complex chronic conditions at the end of extracorporeal membrane oxygenation hospitalisation (5 versus. 3; p < 0.001), longer hospital length of stay (92 days versus 19 days; p < 0.001), and higher use of life-sustaining therapies after decannulation (79% versus 23%; p < 0.001). Consultations occurred mainly for longitudinal psychosocial-spiritual support after patient survived device deployment with a median of 27 days after cannulation. Most children died in the ICU after withdrawal of life-sustaining therapies regardless of consultation status. Over two-thirds of the 44 deaths (84%; n = 37) occurred during extracorporeal membrane oxygenation hospitalisation. CONCLUSIONS: Palliative care consultation was rare showing that palliative care consultation was not viewed as an acute need and only considered when the clinical course became protracted. As a result, there are missed opportunities to involve palliative care earlier and more frequently in the care of extracorporeal membrane survivors and non-survivors and their families.

Sharp Edge Eye Syndrome: A Case Report and Survey of Self-Identified Individuals.

BACKGROUND: Sharp edge eye syndrome (SEES), sometimes known as visual looming syndrome, is a condition in which the patient experiences ocular pain or discomfort when viewing or mentally picturing sharp objects and edges. Patients may present for medical care because they perceive the condition to represent an ophthalmic problem or a sign of a more serious underlying condition. An individual case report of SEES is included to aid in illustrating syndrome characteristics. Our aim is to describe the syndrome, vision-related quality of life (VRQOL), and psychosocial characteristics in patients with self-identified SEES. METHODS: A cross-sectional web-based survey was made available on social media webpages dedicated to SEES. The study included 22 questions developed by the research team, demographic questions, and 4 standardized questionnaires [ID Migraine, the National Eye Institute's Visual Function Questionnaire (NEI-VFQ-25), General Anxiety Disorder-2 (GAD-2), and Patient Health Questionnaire (depression) Scale-2]. RESULTS: Seventy-seven respondents had an average age of 29 and were 57% male. 92% reported symptoms before age 18. The main site of pain or discomfort was the eyes, with onset resulting from viewing or thinking of sharp objects and edges. Symptoms lasted from seconds to hours and could be prolonged even after closing eyes or avoiding viewing the trigger. The composite and subscale scores on the NEI-VFQ-25 were low, with a mean composite score of 78 and selected subscores of general health (61), general vision (73), ocular pain (68), driving (79), mental health (61), and role difficulties (72). Anxiety was reported in 58% of participants, and depression in 57%. Migraine or headache was reported in 46% of participants. Participants reported Alice in Wonderland syndrome, visual snow, obsessive-compulsive disorder, attention deficit hyperactivity disorder, stripe-induced visual discomfort, and synesthesia. CONCLUSION: From this survey, we have the beginnings of an understanding of the characteristics of SEES, as well as VRQOL impacts. These survey responses lead us to postulate that SEES may be a distinct visual phenomenon and to propose SEES criteria. Systematic studies of this condition's clinical features and treatment responses will be additional steps toward improving patient care.

An Automatic Pediatric Palliative Care Consultation for Children Supported on Extracorporeal Membrane Oxygenation: A Survey of Perceived Benefits and Barriers.

Background: Pediatric palliative care (PPC) consultation is infrequent among children on extracorporeal membrane oxygenation (ECMO). Objective: Investigate intensive care unit (ICU) team members' perceptions of automatic PPC consultation for children on ECMO in an ICU in the United States. Methods: Cross-sectional survey assessing benefits, barriers to PPC, and consultation processes. Results: Of 291 eligible respondents, 48% (n = 140) completed the survey and 16% (n = 47) answered an open-ended question. Benefits included support in decision-making (n = 98; 70%) and identification of goals of care (n = 89; 64%). Barriers included perception of giving up on families (n = 59; 42%) and poor acceptability by other team members (n = 58; 41%). Respondents endorsed communication with the primary ICU team before (n = 122; 87%) and after (n = 129; 92%) consultation. Open-ended responses showed more positive (79% vs. 13%) than negative statements. Positive statements reflected on expanding PPC to other critically-ill children where negative statements revealed unrecognized value in PPC. Conclusions: Results demonstrate opportunities for education about the scope of PPC and improvements in PPC delivery.

A Double-Flipped Virtual Classroom Format for Medical Students Learning Ophthalmology: An Approach to Clinical Rotations in the Context of COVID-19.

Purpose The aim of this study was to assess efficacy of a virtual, double-flipped clinical rotation in ophthalmology for medical students during the coronavirus disease 2019 (COVID-19) pandemic. Methods We instituted a virtual, reverse-classroom clinical elective for eight medical students interested in ophthalmology as a career. The course included required prework, interactive case-based discussions, and follow-up quizzes (first flip) entirely prepared and delivered by the students as teachers (second flip). After completion of the course, we surveyed students on five domains: (1) Autonomy and Leadership, (2) Self-Efficacy, (3) Impact on Career Selection, (4) Quality of Educational Experience, and (5) Clear Goals and Feedback using a Likert scale of 1-5 (5 being the most positive). We also asked open-ended questions regarding the overall experience, that is, strengths, weaknesses, and future recommendations for the course. Due to the small N and exploratory nature of the study, no formal statistical inference was performed. Results Seven students responded to the survey. Aggregated mean survey scores for each domain are represented in parentheses. Responses were very positive in regard to "Autonomy and Leadership" (4.5), "Impact on Career Selection" (4.1), "Quality of Educational Experience" (5.0), and "Clear Goals and Feedback" (4.4). "Self-Efficacy," which had an emphasis on ability to perform an eye exam and basic knowledge of ophthalmology, had a lower mean (3.4). The subjective responses were also very positive, but similarly alluded to the limitation of learning examination skills virtually. Conclusions A medical school clinical elective can be successfully executed in a virtual format with an emphasis on student-directed learning. The novel "double-flipped" approach was highly rated by our small sample size. However, there remained a glaring limitation in the ability to transfer clinical skills in the virtual format. In the context of limited in-person contact due to the COVID-19 pandemic, we believe that the double-flipped, virtual format was a viable replacement for a traditional clinical rotation.

Ready for Children Part II: Increasing Pediatric Care Coordination and Psychomotor Skills Evaluation in the Prehospital Setting.

Objectives: Treating pediatric patients often invokes discomfort and anxiety among emergency medical service (EMS) personnel. As part of the process to improve pediatric care in the prehospital system, the Health Resources and Services Administration (HRSA) Emergency Services for Children (EMSC) Program implemented two prehospital performance measures -access to a designated pediatric care coordinator (PECC) and skill evaluation using pediatric equipment-along with a multi-year plan to aid states in achieving the measures. Baseline data from a survey conducted in 2017 showed that less than 25% of EMS agencies had access to PECC and 47% performed skills evaluation using pediatric equipment at least twice a year. To evaluate change over time, the survey was again conducted in 2020, and agencies that participated in both years are compared. Methods: A web-based survey was sent to EMS agency administrators in 58 states and territories from January to March 2020. Descriptive statistics, odds ratios, and 95% confidence intervals were conducted. Results: The response rate was 56%. A total of 5,221 agencies participated in both survey periods representing over 250,000 providers. The percentage of agencies reporting the presence of a PECC increased from 24% to 34% (p= <0.001). However, some agencies reported that they no longer had a PECC, while others reported having a PECC for the first time. Fifty percent (50%) of agencies conduct pediatric psychomotor skills evaluation at least twice/year, a 2% increase over time (p = 0.041); however, a third (34%) evaluate skills using pediatric equipment less than once a year. The presence of a PECC continues to be the variable associated with the highest odds (AOR 2.15, 95% CI 1.91-2.43) of conducting at least semiannual skills evaluation.Conclusions: There is an increase in the presence of pediatric care coordination and the frequency of pediatric psychomotor skills evaluation among national EMS agencies over time. Continued efforts to increase and sustain PECC presence should be an ongoing focus to improve pediatric readiness in the prehospital system.

Incentive delivery timing and follow-up survey completion in a prospective cohort study of injured children: a randomized experiment comparing prepaid and postpaid incentives.

BACKGROUND: Retaining participants over time is a frequent challenge in research studies evaluating long-term health outcomes. This study's objective was to compare the impact of prepaid and postpaid incentives on response to a six-month follow-up survey. METHODS: We conducted an experiment to compare response between participants randomized to receive either prepaid or postpaid cash card incentives within a multisite study of children under 15 years in age who were hospitalized for a serious, severe, or critical injury. Participants were parents or guardians of enrolled children. The primary outcome was survey response. We also examined whether demographic characteristics were associated with response and if incentive timing influenced the relationship between demographic characteristics and response. We evaluated whether incentive timing was associated with the number of calls needed for contact. RESULTS: The study enrolled 427 children, and parents of 420 children were included in this analysis. Follow-up survey response did not differ according to the assigned treatment arm, with the percentage of parents responding to the survey being 68.1% for the prepaid incentive and 66.7% with the postpaid incentive. Likelihood of response varied by demographics. Spanish-speaking parents and parents with lower income and lower educational attainment were less likely to respond. Parents of Hispanic/Latino children and children with Medicaid insurance were also less likely to respond. We found no relationship between the assigned incentive treatment and the demographics of respondents compared to non-respondents. CONCLUSIONS: Prepaid and postpaid incentives can obtain similar participation in longitudinal pediatric critical care outcomes research. Incentives alone do not ensure retention of all demographic subgroups. Strategies for improving representation of hard-to-reach populations are needed to address health disparities and ensure the generalizability of studies using these results.

The Effect of the Familiarity of a Survey Sender on Response Outcomes in a Large-Scale Survey of Emergency Medical Services Agencies.

Survey response is higher when the request comes from a familiar entity compared to an unknown sender. Little is known about how sender influences response to surveys of organizations. We assessed whether familiarity of the sender influences response outcomes in a survey of emergency medical services agencies. Emergency medical services agencies in one U.S. state were randomly assigned to receive survey emails from either a familiar or unfamiliar sender. Both deployment approaches were subsequently used nationwide, with each state selecting one of the two contact methods. Experimental results showed that requests from the familiar sender achieved higher survey response (54.3%) compared to requests from the unfamiliar sender (36.9%; OR: 2.03; 95% CI: 1.23, 3.33). Similar results were observed in the subsequent nationwide survey; in states where the familiar sender deployed the survey, 62.0% of agencies responded, compared to 51.0% when the survey was sent by the unfamiliar sender (OR: 1.57; 95% CI: 1.47, 1.67). The response difference resulted in nearly 60 additional hours of staff time needed to perform telephone follow-up to nonrespondents. When surveying healthcare organizations, surveyors should recognize that it is more challenging to obtain responses without a pre-established relationship with the organizations.

Evaluation of Emergency Department Pediatric Readiness and Outcomes Among US Trauma Centers.

Importance: The National Pediatric Readiness Project is a US initiative to improve emergency department (ED) readiness to care for acutely ill and injured children. However, it is unclear whether high ED pediatric readiness is associated with improved survival in US trauma centers. Objective: To evaluate the association between ED pediatric readiness, in-hospital mortality, and in-hospital complications among injured children presenting to US trauma centers. Design, Setting, and Participants: A retrospective cohort study of 832 EDs in US trauma centers in 50 states and the District of Columbia was conducted using data from January 1, 2012, through December 31, 2017. Injured children younger than 18 years who were admitted, transferred, or with injury-related death in a participating trauma center were included in the analysis. Subgroups included children with an Injury Severity Score (ISS) of 16 or above, indicating overall seriously injured (accounting for all injuries); any Abbreviated Injury Scale (AIS) score of 3 or above, indicating at least 1 serious injury; a head AIS score of 3 or above, indicating serious brain injury; and need for early use of critical resources. Exposures: Emergency department pediatric readiness for the initial ED visit, measured through the weighted Pediatric Readiness Score (range, 0-100) from the 2013 National Pediatric Readiness Project ED pediatric readiness assessment. Main Outcomes and Measures: In-hospital mortality, with a secondary composite outcome of in-hospital mortality or complication. For the primary measurement tools used, the possible range of the AIS is 0 to 6, with 3 or higher indicating a serious injury; the possible range of the ISS is 0 to 75, with 16 or higher indicating serious overall injury. The weighted Pediatric Readiness Score examines and scores 6 domains; in this study, the lowest quartile included scores of 29 to 62 and the highest quartile included scores of 93 to 100. Results: There were 372 004 injured children (239 273 [64.3%] boys; median age, 10 years [interquartile range, 4-15 years]), including 5700 (1.5%) who died in-hospital and 5018 (1.3%) who developed in-hospital complications. Subgroups included 50 440 children (13.6%) with an ISS of 16 or higher, 124 507 (33.5%) with any AIS score of 3 or higher, 57 368 (15.4%) with a head AIS score of 3 or higher, and 32 671 (8.8%) requiring early use of critical resources. Compared with EDs in the lowest weighted Pediatric Readiness Score quartile, children cared for in the highest ED quartile had lower in-hospital mortality (adjusted odds ratio [aOR], 0.58; 95% CI, 0.45-0.75), but not fewer complications (aOR for the composite outcome 0.88; 95% CI, 0.74-1.04). These findings were consistent across subgroups, strata, and multiple sensitivity analyses. If all children cared for in the lowest-readiness quartiles (1-3) were treated in an ED in the highest quartile of readiness, an additional 126 lives (95% CI, 97-154 lives) might be saved each year in these trauma centers. Conclusions and Relevance: In this cohort study, injured children treated in high-readiness EDs had lower mortality compared with similar children in low-readiness EDs, but not fewer complications. These findings support national efforts to increase ED pediatric readiness in US trauma centers that care for children.

Prevalence of specialised palliative care consultation for eligible children within a paediatric cardiac ICU.

OBJECTIVE: Retrospectively apply criteria from Center to Advance Palliative Care to a cohort of children treated in a cardiac ICU and compare children who received a palliative care consultation to those who were eligible for but did not receive one. METHODS: Medical records of children admitted to a cardiac ICU between January 2014 and June 2017 were reviewed. Selected criteria include cardiac ICU length of stay >14 days and/or ≥ 3 hospitalisations within a 6-month period. MEASUREMENTS AND RESULTS: A consultation occurred in 17% (n = 48) of 288 eligible children. Children who received a consult had longer cardiac ICU (27 days versus 17 days; p < 0.001) and hospital (91 days versus 35 days; p < 0.001) lengths of stay, more complex chronic conditions at the end of first hospitalisation (3 versus1; p < 0.001) and the end of the study (4 vs.2; p < 0.001), and higher mortality (42% versus 7%; p < 0.001) when compared with the non-consulted group. Of the 142 pre-natally diagnosed children, only one received a pre-natal consult and 23 received it post-natally. Children who received a consultation (n = 48) were almost 2 months of age at the time of the consult. CONCLUSIONS: Less than a quarter of eligible children received a consultation. The consultation usually occurred in the context of medical complexity, high risk of mortality, and at an older age, suggesting potential opportunities for more and earlier paediatric palliative care involvement in the cardiac ICU. Screening criteria to identify patients for a consultation may increase the use of palliative care services in the cardiac ICU.

"The Adjunct Faculty Are Our Lifeblood" An Institution's Response to Deliver Value to Volunteer Community Faculty.

BACKGROUND AND OBJECTIVES: Because of the importance of and increasing competition for unpaid community faculty's time, we qualitatively evaluated the adjunct community faculty experience in order to identify mechanisms to improve the recruitment, training, and retention of these faculty members. METHODS: The authors captured community faculty and key stakeholder opinion through interviews, focus groups, and a survey to elucidate their perspective of roles, responsibilities, facilitators, and barriers for providing quality teaching and learning experiences. After evaluating the data, we created an impact/effort matrix to guide suggested changes. RESULTS: Key medical education stakeholders reported adjunct community faculty members were critical to delivery of the medical school curriculum and shared methods and barriers for retaining members. Adjunct community faculty focus groups revealed two major themes: (1) personal experience and motivation, and (2) individual advantages and institutional barriers that influence being a faculty member. The survey and impact/effort matrix led to interventions including an Office of Community Faculty to implement recruitment and retention programs and provide more comprehensive oversight, a clinical scheduling hub, improved access to specialists for community faculty, and awards to recognize the critical contributions of community faculty members. CONCLUSIONS: As competition for community placements increases, including community faculty voices to inform action is an effective investment that enables an institution to direct resources towards interventions that maximize their support and engagement. Including community faculty perspectives also increases faculty's ability to participate in training the next generation of physicians.

Health and Health Needs of Children of Women Seeking Services for and Safety From Intimate Partner Violence.

Children exposed to intimate partner violence (IPV) are at increased risk for health problems. The moment that a mother seeks services for or safety from IPV may be a window of opportunity to offer needed health care for her children. The objective of the study is to describe the perceptions of child health conditions and needs among mothers seeking services for or safety from IPV, and to compare the results in shelter- versus community-based samples. A cross-sectional survey of women with at least one child of age 3 to 11 years seeking services at an urban YWCA, which supports a residential IPV shelter and a community-based family justice center, was done between fall 2013 and winter 2014. Child health conditions were captured using the Children With Special Health Care Needs survey and the Strengths and Difficulties Questionnaire. Prevalence of health conditions among IPV-exposed children was compared with population norms. Perceived child health and health needs in the residential versus community settings were compared. Women (n = 48) completed surveys related to 91 children. Special health care needs (25%) and behavioral health (52%) problems were significantly higher in our sample than in general populations. Almost one quarter (24%) of children had a current need for general medical care and almost one half (44%) had a current need for behavioral health care. No significant differences in child health conditions or needs between residential and community settings were observed. These findings extend prior research describing the health problems faced by children exposed to IPV by describing maternal perceptions of child health and need for health care in a critical moment of seeking help for IPV. Community agencies may use this window of opportunity to support child health and household safety.

Characteristics Associated With Presence of Pediatric Mental Health Care Policies in Emergency Departments.

OBJECTIVES: The majority of US children do not have access to an emergency department (ED) with a pediatric mental health care policy in place. Our objective was to understand factors associated with whether US EDs have a pediatric mental health care policy. METHODS: We analyzed data from the National Pediatric Readiness Project, a nationally representative cross-sectional survey of US EDs. Nurse managers reported whether their hospitals had a policy to care for children with social/mental health concerns (n = 3612). We calculated prevalence estimates, prevalence ratios (PRs), and confidence intervals (CIs) for regional and ED characteristics (eg, rurality and types of personnel) by whether EDs had a pediatric mental health care policy. RESULTS: Overall, 46.2% (n = 1668/3612) of EDs had a pediatric mental health care policy. Emergency departments located in remote areas were 60% less likely to have such a policy compared with EDs in urban areas (PR, 0.4; CI, 0.3-0.5). Emergency department characteristics associated with having a pediatric mental health care policy included having a policy to transfer children with social/mental health concerns (PR, 5.4; CI, 4.7-6.2), having a policy to address maltreatment (PR, 3.4; CI, 2.6-4.4), and having nurse and physician pediatric emergency care coordinators (PR, 1.6; CI, 1.5-1.8). CONCLUSIONS: Lower prevalence of pediatric mental health policies in rural EDs is concerning considering EDs are often the first point of contact for pediatric patients. This work highlights the importance of pediatric emergency care coordinators in fostering ED capacity to meet children's mental health needs.

A Core Outcome Set for Pediatric Critical Care.

OBJECTIVES: More children are surviving critical illness but are at risk of residual or new health conditions. An evidence-informed and stakeholder-recommended core outcome set is lacking for pediatric critical care outcomes. Our objective was to create a multinational, multistakeholder-recommended pediatric critical care core outcome set for inclusion in clinical and research programs. DESIGN: A two-round modified Delphi electronic survey was conducted with 333 invited research, clinical, and family/advocate stakeholders. Stakeholders completing the first round were invited to participate in the second. Outcomes scoring greater than 69% "critical" and less than 15% "not important" advanced to round 2 with write-in outcomes considered. The Steering Committee held a virtual consensus conference to determine the final components. SETTING: Multinational survey. PATIENTS: Stakeholder participants from six continents representing clinicians, researchers, and family/advocates. MEASUREMENTS AND MAIN RESULTS: Overall response rates were 75% and 82% for each round. Participants voted on seven Global Domains and 45 Specific Outcomes in round 1, and six Global Domains and 30 Specific Outcomes in round 2. Using overall (three stakeholder groups combined) results, consensus was defined as outcomes scoring greater than 90% "critical" and less than 15% "not important" and were included in the final PICU core outcome set: four Global Domains (Cognitive, Emotional, Physical, and Overall Health) and four Specific Outcomes (Child Health-Related Quality of Life, Pain, Survival, and Communication). Families (n = 21) suggested additional critically important outcomes that did not meet consensus, which were included in the PICU core outcome set-extended. CONCLUSIONS: The PICU core outcome set and PICU core outcome set-extended are multistakeholder-recommended resources for clinical and research programs that seek to improve outcomes for children with critical illness and their families.

An Assessment of Clinical and System Drivers of Family Satisfaction in the PICU.

OBJECTIVE: Investigate clinical and system drivers of family satisfaction in the PICU. DESIGN: Mixed methods qualitative and quantitative (observational) study. Qualitative interviews with families were performed as a pilot to inform modality of survey distribution based on family preferences. A validated pediatric satisfaction survey deployed to family members for 7 months with a corresponding chart review and administrative data collection. SETTING: PICU in a tertiary children's hospital. PATIENTS: Two hundred six families of patients admitted to the PICU more than 48 hours. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Families preferred surveys distributed electronically on a tablet in the PICU setting. The Pediatric Family Satisfaction-ICU survey was used to assess comfort with medical decision-making and communication with the care team. Capture rate of all eligible patients was 69.5% and response rate was 90.8%. Overall, 64.7% of respondents were highly satisfied, whereas over one third were not highly satisfied; families of Hispanic ethnicity (odds ratio of lower satisfaction of families with Hispanic ethnicity: 2.09; 95% CI, 1.01-4.33; p = 0.047) and high social stressors (odds ratio of higher satisfaction among high stressed subgroup: 0.49; 95% CI, 0.24-0.99; p = 0.047) reported statistically significant lower satisfaction. Additional free-text responses were identified in 21% of respondents, with the majority of comments indicating wishes for improvements clustered around communication with the medical team or sleeping environment of families and patients. CONCLUSIONS: High capture rates of family satisfaction in the PICU can be obtained with a PICU-specific survey, limiting barriers to completion by including family preferences, and distributing in the PICU setting. Less than two-third of PICU families are highly satisfied; patients of Hispanic ethnicity and those with high social stressors predict low satisfaction, whereas illness severity, age, and PICU length of stay did not have statistical significance. Local improvement teams can use this approach to drive enhanced satisfaction.

Development of a core outcome set for pediatric critical care outcomes research.

BACKGROUND: Pediatric Intensive Care Unit (PICU) teams provide care for critically ill children with diverse and often complex medical and surgical conditions. Researchers often lack guidance on an approach to select the best outcomes when evaluating this critically ill population. Studies would be enhanced by incorporating multi-stakeholder preferences to better evaluate clinical care. This manuscript outlines the methodology currently being used to develop a PICU Core Outcome Set (COS). This PICU COS utilizes mixed methods, an inclusive stakeholder approach, and a modified Delphi consensus process that will serve as a resource for PICU research programs. METHODS: A Scoping Review of the PICU literature evaluating outcomes after pediatric critical illness, a qualitative study interviewing PICU survivors and their parents, and other relevant literature will serve to inform a modified, international Delphi consensus process. The Delphi process will derive a set of minimum domains for evaluation of outcomes of critically ill children and their families. Delphi respondents include researchers, multidisciplinary clinicians, families and former patients, research funding agencies, payors, and advocates. Consensus meetings will refine and finalize the domains of the COS, outline a battery instruments for use in future studies, and prepare for extensive dissemination for broad implementation. DISCUSSION: The PICU COS will be a guideline resource for investigators to assure that outcomes most important to all stakeholders are considered in PICU clinical research in addition to those deemed most important to individual scientists. TRIAL REGISTRATION: COMET database (http://www.comet-initiative.org/, Record ID 1131, 01/01/18).

Palliative Care in Children With Heart Disease Treated in an ICU.

OBJECTIVES: Describe pediatric palliative care consult in children with heart disease; retrospectively apply Center to Advance Palliative Care criteria for pediatric palliative care consults; determine the impact of pediatric palliative care on end of life. DESIGN: A retrospective single-center study. SETTING: A 16-bed cardiac ICU in a university-affiliated tertiary care children's hospital. PATIENTS: Children (0-21 yr old) with heart disease admitted to the cardiac ICU from January 2014 to June 2017. MEASUREMENTS AND MAIN RESULTS: Over 1,000 patients (n = 1, 389) were admitted to the cardiac ICU with 112 (8%) receiving a pediatric palliative care consultation. Patients who received a consult were different from those who did not. Patients who received pediatric palliative care were younger at first hospital admission (median 63 vs 239 d; p = 0.003), had a higher median number of complex chronic conditions at the end of first hospitalization (3 vs 1; p < 0.001), longer cumulative length of stay in the cardiac ICU (11 vs 2 d; p < 0.001) and hospital (60 vs 7 d; p < 0.001), and higher mortality rates (38% vs 3%; p < 0.001). When comparing location and modes of death, patients who received pediatric palliative care were more likely to die at home (24% vs 2%; p = 0.02) and had more comfort care at the end of life (36% vs 2%; p = 0.002) compared to those who did not. The Center to Advance Palliative Care guidelines identified 158 patients who were eligible for pediatric palliative care consultation; however, only 30 patients (19%) in our sample received a consult. CONCLUSIONS: Pediatric palliative care consult rarely occurred in the cardiac ICU. Patients who received a consult were medically complex and experienced high mortality. Comfort care at the end of life and death at home was more common when pediatric palliative care was consulted. Missed referrals were apparent when Center to Advance Palliative Care criteria were retrospectively applied.

"In Africa, There Was No Family Planning. Every Year You Just Give Birth": Family Planning Knowledge, Attitudes, and Practices Among Somali and Congolese Refugee Women After Resettlement to the United States.

It is crucial for refugee service providers to understand the family planning knowledge, attitudes, and practices of refugee women following third country resettlement. Using an ethnographic approach rooted in Reproductive Justice, we conducted six focus groups that included 66 resettled Somali and Congolese women in a western United States (US) metropolitan area. We analyzed data using modified grounded theory. Three themes emerged within the family planning domain: (a) concepts of family, (b) fertility management, and (c) unintended pregnancy. We contextualized these themes within existing frameworks for refugee cultural transition under the analytic paradigms of "pronatalism and stable versus evolving family structure" and "active versus passive engagement with family planning." Provision of just and equitable family planning care to resettled refugee women requires understanding cultural relativism, social determinants of health, and how lived experiences influence family planning conceptualization. We suggest a counseling approach and provider practice recommendations based on our study findings.