Feasibility and Perceived Benefits of a Framework for Physician-Parent Follow-Up Meetings After a Child’s Death in the PICU*

To describe pediatric severe asthma care, complications, and outcomes to plan for future prospective studies by the Collaborative Pediatric Critical Care Research Network. Retrospective cohort study. : Pediatric intensive care units in the United States that submit administrative data to the Pediatric Health Information System. Children 1-18 yrs old treated in a Pediatric Health Information System pediatric intensive care unit for asthma during 2004-2008. None. Thirteen-thousand five-hundred fifty-two children were studied; 2,812 (21%) were treated in a Collaborative Pediatric Critical Care Research Network and 10,740 (79%) were treated in a non-Collaborative Pediatric Critical Care Research Network pediatric intensive care unit. Medication use in individual Collaborative Pediatric Critical Care Research Network centers differed widely: ipratropium bromide (41%-84%), terbutaline (11%-74%), magnesium sulfate (23%-64%), and methylxanthines (0%-46%). Complications including pneumothorax (0%-0.6%), cardiac arrest (0.2%-2%), and aspiration (0.2%-2%) were rare. Overall use of medical therapies and complications at Collaborative Pediatric Critical Care Research Network centers were representative of pediatric asthma care at non-Collaborative Pediatric Critical Care Research Network pediatric intensive care units. Median length of pediatric intensive care unit stay at Collaborative Pediatric Critical Care Research Network centers was 1 to 2 days and death was rare (0.1%-3%). Ten percent of children treated at Collaborative Pediatric Critical Care Research Network centers received invasive mechanical ventilation compared to 12% at non-Collaborative Pediatric Critical Care Research Network centers. Overall 44% of patients who received invasive mechanical ventilation were intubated in the pediatric intensive care unit. Children intubated outside the pediatric intensive care unit had significantly shorter median ventilation days (1 vs. 3), pediatric intensive care unit days (2 vs. 4), and hospital days (4 vs. 7) compared to those intubated in the pediatric intensive care unit. Among children who received mechanical respiratory support, significantly more (41% vs. 25%) were treated with noninvasive ventilation and significantly fewer (41% vs. 58%) were intubated before pediatric intensive care unit care when treated in a Pediatric Health Information System hospital emergency department. Marked variations in medication therapies and mechanical support exist. Death and other complications were rare. More than half of patients treated with mechanical ventilation were intubated before pediatric intensive care unit care. Site of respiratory mechanical support initiation was associated with length of stay.

Introduction: To improve end-of-life care, the Collaborative Pediatric Critical Care Research Network (CPCCRN) developed a framework for conducting physician-parent follow-up meetings after a child’s death in the PICU. The framework includes addressing parents’ questions, providing emotional support and eliciting and responding to feedback. Hypothesis: We hypothesized that implementation of the CPCCRN framework is feasible in clinical practice and that bereaved parents and PICU physicians would perceive follow-up meetings as beneficial. Methods: 46 physicians from 7 CPCCRN affiliated PICUs were trained to apply the framework. Parents whose child died in one of these PICUs were invited to participate in a video-recorded follow-up meeting with a trained physician who participated in their child’s care. Within a week of the meeting, parents and physicians completed a survey about their meeting experience. Follow-up meeting videos were reviewed by two trained research assistants who rated each of 20 physician behaviors consistent with the framework as present or absent, and rated the quality of performance of each behavior on a 5-point scale (1=low, 5=high). Discrepancies in ratings were resolved by consensus. Results: 36 follow-up meetings were conducted including 54 bereaved parents, 17 parent support persons (e.g., relatives), 36 PICU physicians, and 47 other hospital staff. Meetings were held 3.4 ± 1.5 months after the death. Of 50 parents who completed the survey, 92% agreed or strongly agreed that the meeting was helpful to them, 89% that it was helpful to other family members, and 78% that it will help them to cope in the future. Of the 36 physicians, 75% agreed or strongly agreed that they adhered to the framework and 92% that it was easy to use. 92% of physicians agreed or strongly agreed that the meeting was beneficial to parents and 86% to them. Fidelity to the framework was high with 81%±5% desired physician behaviors rated as present with a quality score of 4.4 ± 0.2. Conclusions: Physician-parent follow-up meetings are feasible in clinical practice and viewed as beneficial by parents and physicians. Further research should examine the long term effects of follow-up meetings on bereaved parents’ health outcomes.

To investigate critical care physicians' experiences and perspectives regarding follow-up meetings with parents after a child's death in the pediatric intensive care unit. Parents of children who die in the pediatric intensive care unit often desire a follow-up meeting with the physicians who cared for their child. Semistructured, audio-recorded telephone interviews. Six clinical centers affiliated with the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. Seventy critical care physicians (i.e., attendings and fellows) practicing or training at a Child Health and Human Development Collaborative Pediatric Critical Care Research Network clinical center between February 1, 2008 and June 30, 2008. Twenty-three (33%) physicians reported never participating in a follow-up meeting with bereaved parents; 22 (31%) participated in one to five meetings; and 25 (36%) participated in more than five meetings. Of those with prior experience, 44 (94%) met with parents at the hospital and 40 (85%) met within 3 months of the death. Meeting content included discussing autopsy, parent questions, hospital course, cause of death, genetic risk, bereavement services, and legal or administrative issues; providing emotional support; and receiving parent feedback. Forty (85%) physicians perceived the meetings to be beneficial to families, and 35 (74%) to physicians. Barriers included time and scheduling, family and physician unwillingness, distance and transportation, language and cultural issues, parent anger, and lack of a system for meeting initiation and planning. Critical care physicians have a wide range of experience conducting follow-up meetings with bereaved parents. Although physicians perceive benefits to follow-up meetings, barriers exist that interfere with their implementation in clinical practice.

To update the pediatric critical care community on the progress of the Collaborative Pediatric Critical Care Research Network and plans for the future. The six sites, seven hospitals of the Collaborative Pediatric Critical Care Research Network. From the time of its inception in August 2005, the Network has engaged in a number of observational and interventional trials, several of which are ongoing. Additional studies are in the planning stages. To date, these studies have resulted in the publication of six manuscripts and five abstracts, with five additional manuscripts accepted and in press. The Network remains committed to its stated goal "to initiate a multicentered program designed to investigate the safety and efficacy of treatment and management strategies to care for critically ill children, as well as the pathophysiologic basis of critical illness and injury in childhood."

We examined physicians' conceptualization of closure as a benefit of follow-up meetings with bereaved parents. The frequency of use and the meaning of the word "closure" were analyzed in transcripts of interviews with 67 critical care physicians affiliated with the Collaborative Pediatric Critical Care Research Network. In all, 38 physicians (57 percent) used the word "closure" at least once (median: 2; range: 1 to 7), for a total of 86 times. Physicians indicated that closure is a process or trajectory rather than an achievable goal. They also indicated that parents and physicians can move toward closure by gaining a better understanding of the causes and circumstances of the death and by reconnecting with, or resolving relationships between, parents and health professionals. Physicians suggested that a primary reason to conduct follow-up meetings is that such meetings offer parents and physicians an opportunity to move toward closure. Future research should attempt to determine whether followup meetings reduce the negative effects of bereavement for parents and physicians.

Introduction: Research suggests that finding meaning after a traumatic event is associated with better psychological adjustment. To facilitate this process, the Collaborative Pediatric Critical Care Research Network developed a framework for conducting follow-up meetings between physicians and parents after a child's death in a PICU (Eggly, Pediatr Crit Care Med, 2011). Our objective is to identify and describe types of meaning-making processes that occur among bereaved parents during follow-up meetings with their child's PICU physician. Methods: 35 follow-up meetings including 54 bereaved parents and 23 physicians were conducted 3.4 ± 1.5 months after the child's death. Meetings were video recorded and transcribed verbatim. Using standard qualitative procedures, an interdisciplinary team analyzed the transcripts to identify and describe themes consistent with extant meaning-making theory. Results: Four major themes were identified: (1) sense making, (2) benefit finding, (3) continuing bonds, and (4) identity reconstruction. Sense making refers to seeking an explanation for the death including biomedical explanations, parents' role in the death, parents' prior decisions on treatment and end-of-life care, and blame. Benefit finding refers to exploring positive consequences of the death (i.e., a "silver lining") including ways to help others such as donations, feedback, volunteering, and contributing to medical knowledge. Continuing bonds refers to exploring ongoing connections with the deceased child including reminiscing about the child, photos/mementos, personal rituals (e.g., visiting the cemetery), and community events to honor the child. Identity reconstruction refers to exploring changes in parents' sense of self including life changes related to relationships, work, or home. Conclusions: Physician-parent follow-up meetings facilitate several types of meaning-making processes for bereaved parents. Further research should examine the extent to which meaning making during follow-up meetings affects parental health outcomes.

The Collaborative Pediatric Critical Care Research Network (CPCCRN) was established by the Eunice Kennedy Shriver National Institute of Child Health and Human Development in May 2005 to develop an infrastructure for collaborative clinical trials and meaningful descriptive studies in pediatric critical care. This article describes the history of CPCCRN, discusses its financial and organizational structure, illustrates how funds were efficiently used to carry out studies, and describes CPCCRN public use datasets and future directions, concluding with the development of the PeRsonalizEd Immunomodulation in PediatriC SepsIS-InducEd MODS study.

To provide an updated overview of critical pertussis to the pediatric critical care community and describe a study of critical pertussis recently undertaken. The six sites, seven hospitals of the Collaborative Pediatric Critical Care Research Network, and 17 outside sites at academic medical centers with pediatric intensive care units. Despite high coverage for childhood vaccination, pertussis causes substantial morbidity and mortality in US children, especially among infants. In pediatric intensive care units, Bordetella pertussis is a community-acquired pathogen associated with critical illness and death. The incidence of medical and developmental sequelae in critical pertussis survivors remains unknown, and the appropriate strategies for treatment and support remain unclear. The Collaborative Pediatric Critical Care Research Network Critical Pertussis Study has begun to evaluate critical pertussis in a prospective cohort. Research is urgently needed to provide an evidence base that might optimize management for critical pertussis, a serious, disabling, and too often fatal illness for U.S. children and those in the developing world.

To describe variability in end-of-life practices among tertiary care PICUs in the United States. Secondary analysis of data prospectively collected from a random sample of patients (n = 10,078) admitted to PICUs affiliated with the Collaborative Pediatric Critical Care Research Network between December 4, 2011, and April 7, 2013. Seven clinical centers affiliated with the Collaborative Pediatric Critical Care Research Network. Patients included in the primary study were less than 18 years old, admitted to a PICU, and not moribund on PICU admission. Patients included in the secondary analysis were those who died during their hospital stay. None. Two hundred and seventy-five (2.7%; range across sites, 1.3-5.0%) patients died during their hospital stay; of these, 252 (92%; 76-100%) died in a PICU. Discussions with families about limitation or withdrawal of support occurred during the initial PICU stay for 173 patients (63%; 47-76%; p = 0.27) who died. Of these, palliative care was consulted for 67 (39%; 12-46%); pain service for 11 (6%; 10 of which were at a single site); and ethics committee for six (3%, from three sites). Mode of death was withdrawal of support for 141 (51%; 42-59%), failed cardiopulmonary resuscitation for 53 (19%; 12-28%), limitation of support for 46 (17%; 7-24%), and brain death for 35 (13%; 8-20%); mode of death did not differ across sites (p = 0.58). Organ donation was requested from 101 families (37%; 17-88%; p < 0.001). Of these, 20 donated (20%; 0-64%). Sixty-two deaths (23%; 10-53%; p < 0.001) were medical examiner cases. Of nonmedical examiner cases (n = 213), autopsy was requested for 79 (37%; 17-75%; p < 0.001). Of autopsies requested, 53 (67%; 50-100%) were performed. Most deaths in Collaborative Pediatric Critical Care Research Network-affiliated PICUs occur after life support has been limited or withdrawn. Wide practice variation exists in requests for organ donation and autopsy.

Changes in technology and increased reports of successful extracorporeal life support use in patient populations, such as influenza, cardiac arrest, and adults, are leading to expansion of extracorporeal life support. Major limitations to extracorporeal life support expansion remain bleeding and thrombosis. These complications are the most frequent causes of death and morbidity. As a pilot project to provide baseline data for a detailed evaluation of bleeding and thrombosis in the current era, extracorporeal life support patients were analyzed from eight centers in the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. Retrospective analysis of patients (< 19 yr) reported to the Extracorporeal Life Support Organization registry from eight Collaborative Pediatric Critical Care Research Network centers between 2005 and 2011. Tertiary children's hospitals within the Collaborative Pediatric Critical Care Research Network. The study cohort consisted of 2,036 patients (13% with congenital diaphragmatic hernia). None. In the cohort of patients without congenital diaphragmatic hernia (n = 1,773), bleeding occurred in 38% of patients, whereas thrombosis was noted in 31%. Bleeding and thrombosis were associated with a decreased survival by 40% (relative risk, 0.59; 95% CI, 0.53-0.66) and 33% (odds ratio, 0.67; 95% CI, 0.60-0.74). Longer duration of extracorporeal life support and use of venoarterial cannulation were also associated with increased risk of bleeding and/or thrombotic complications and lower survival. The most common bleeding events included surgical site bleeding (17%; n = 306), cannulation site bleeding (14%; n = 256), and intracranial hemorrhage (11%; n = 192). Common thrombotic events were clots in the circuit (15%; n = 274) and the oxygenator (12%; n = 212) and hemolysis (plasma-free hemoglobin > 50 mg/dL) (10%; n = 177). Among patients with congenital diaphragmatic hernia, bleeding and thrombosis occurred in, respectively, 45% (n = 118) and 60% (n = 159), Bleeding events were associated with reduced survival (relative risk, 0.62; 95% CI, 0.46-0.86) although thrombotic events were not (relative risk, 0.92; 95% CI, 0.67-1.26). Bleeding and thrombosis remain common complications in patients undergoing extracorporeal life support. Further research to reduce or eliminate bleeding and thrombosis is indicated to help improve patient outcome.

To describe factors associated with platelet transfusion during pediatric extracorporeal membrane oxygenation and the relationships among platelet transfusion, complications, and mortality. Secondary analysis of data collected prospectively by the Collaborative Pediatric Critical Care Research Network between December 2012 and September 2014. Eight Collaborative Pediatric Critical Care Research Network-affiliated hospitals. Age less than 19 years old and treated with extracorporeal membrane oxygenation. None. Of 511 children, 496 (97.1%) received at least one platelet transfusion during extracorporeal membrane oxygenation. Neonatal age, venoarterial extracorporeal membrane oxygenation, and various acute and chronic diagnoses were associated with increased average daily platelet transfusion volume (milliliters per kilogram body weight). On multivariable analysis, average daily platelet transfusion volume was independently associated with mortality (per 1 mL/kg; odds ratio, 1.05; CI, 1.03-1.08; p < 0.001), whereas average daily platelet count was not (per 1 × 10/L up to 115 × 10/L; odds ratio, 1.00; CI, 0.98-1.01; p = 0.49). Variables independently associated with increased daily bleeding risk included increased platelet transfusion volume on the previous extracorporeal membrane oxygenation day, a primary cardiac indication for extracorporeal membrane oxygenation, adolescent age, and an acute diagnosis of congenital cardiovascular disease. Variables independently associated with increased daily thrombotic risk included increased platelet transfusion volume on the previous extracorporeal membrane oxygenation day and venoarterial extracorporeal membrane oxygenation. Variables independently associated with decreased daily thrombotic risk included full-term neonatal age and an acute diagnosis of airway abnormality. Platelet transfusion was common in this multisite pediatric extracorporeal membrane oxygenation cohort. Platelet transfusion volume was associated with increased risk of mortality, bleeding, and thrombosis.

Introduction: To improve end-of-life care, the Collaborative Pediatric Critical Care Research Network developed and pilot-tested a framework for conducting follow-up meetings after a child’s death in the PICU. Follow-up meetings were determined to be feasible and acceptable to parents and physicians, but parents’ psychological states may influence their perceptions of the meetings. Prior research suggests that parents’ language use, such as words indicating positive and negative emotions, can predict their psychological state. This study examined associations between parents’ word use and their perceptions of the meetings. Methods: Using Linguistic Inquiry Word Count (LIWC) software, we analyzed transcripts of 35 video-recorded follow-up meetings conducted between PICU physicians and bereaved parents (33 mothers, 21 fathers). We assessed relationships between parents’ words indicating positive (e.g., “nice”) and negative (e.g., “hurt”) emotions and their perceptions of the meetings reported on a 7-item survey conducted a week later, using Pearson’s correlations. Survey items were: 1) information discussed was important, 2) information was discussed in a way I could understand it, 3) I could ask questions, 4) I felt emotionally supported, 5) I could provide feedback, 6) the meeting was helpful, and 7) the meeting will help me cope. Results: Parents’ use of positive emotion words was not correlated with perceptions of the meeting. Fathers’ use of negative emotion words was negatively associated with mothers’ (but not their own) perceptions that: information was discussed in a way they could understand it (p=.047), they could ask questions (p=.047), they could provide feedback (p=.02), and the meeting was helpful (p=.05). Mothers’ use of negative emotion words was negatively associated with their feeling emotionally supported (p=.014). Fathers’ use of words indicating anxiety (e.g., “worried”) was negatively associated with their feeling the information was important (p=.031), the information was discussed in a way they could understand it (p=.036), and the meeting was helpful (p=.037). Fathers’ anxiety words were negatively associated with mothers’ perceptions of every item (information importance, p=.001; information understood, p=001; questions, p=.001; support p=.001; feedback, p=.001; helpful, p=.002; cope, p=.003). Mothers’ anxiety words were negatively associated with their perceptions of information importance (p=.02), information understood (p=.016), questions (p=.016), and helpfulness (p=.019). Conclusions: Parents’ negative emotions, particularly anxiety, expressed during follow-up meetings after their child’s death in the PICU are associated with negative perceptions of the meetings. Physicians and other health care professionals should be aware of and address parents’ emotions during the meetings, and consider referring parents with high anxiety for further follow-up care.

To describe functional status at hospital discharge for neonatal and pediatric patients treated with extracorporeal membrane oxygenation, and identify factors associated with functional status and mortality. Secondary analysis of observational data collected by the Collaborative Pediatric Critical Care Research Network between December 2012 and September 2014. Eight hospitals affiliated with the Collaborative Pediatric Critical Care Research Network. Patients were less than 19 years old and treated with extracorporeal membrane oxygenation. Functional status was evaluated among survivors using the Functional Status Scale. Total Functional Status Scale scores range from 6 to 30 and are categorized as 6-7 (good), 8-9 (mildly abnormal), 10-15 (moderately abnormal), 16-21 (severely abnormal), and greater than 21 (very severely abnormal). Of 514 patients, 267 (52%) were neonates (≤ 30 d old). Indication for extracorporeal membrane oxygenation was respiratory for 237 (46%), cardiac for 207 (40%), and extracorporeal cardiopulmonary resuscitation for 70 (14%). Among 282 survivors, 89 (32%) had good, 112 (40%) mildly abnormal, 67 (24%) moderately abnormal, and 14 (5%) severely or very severely abnormal function at hospital discharge. Among neonates, development of renal failure and longer hospitalization were independently associated with worse Functional Status Scale. Chronic conditions, prematurity, venoarterial extracorporeal membrane oxygenation, increased red cell transfusion in the first 24 hours of extracorporeal membrane oxygenation, and longer extracorporeal membrane oxygenation duration were independently associated with mortality. Among pediatric patients, chronic neurologic conditions, tracheostomy or home ventilator, extracorporeal cardiopulmonary resuscitation, hepatic dysfunction, and longer ICU stay were independently associated with worse Functional Status Scale. Chronic cardiac conditions, hepatic dysfunction, and neurologic or thrombotic complications were independently associated with mortality. Achieving blood lactate concentration less than or equal to 2 mmol/L during extracorporeal membrane oxygenation was independently associated with survival in both neonatal and pediatric patients. In this study, about half of extracorporeal membrane oxygenation patients survived with good, mildly abnormal, or moderately abnormal function at hospital discharge. Patient and extracorporeal membrane oxygenation-related factors are associated with functional status and mortality.

To describe factors associated with hemolysis during pediatric extracorporeal membrane oxygenation and the relationships between hemolysis, complications, and mortality. Secondary analysis of data collected prospectively by the Collaborative Pediatric Critical Care Research Network between December 2012 and September 2014. Three Collaborative Pediatric Critical Care Research Network-affiliated hospitals. Age less than 19 years and treated with extracorporeal membrane oxygenation. None. Hemolysis was defined based on peak plasma free hemoglobin levels during extracorporeal membrane oxygenation and categorized as none (< 0.001 g/L), mild (0.001 to < 0.5 g/L), moderate (0.5 to < 1.0 g/L), or severe (≥ 1.0 g/L). Of 216 patients, four (1.9%) had no hemolysis, 67 (31.0%) had mild, 51 (23.6%) had moderate, and 94 (43.5%) had severe. On multivariable analysis, variables independently associated with higher daily plasma free hemoglobin concentration included the use of in-line hemofiltration or other continuous renal replacement therapy, higher hemoglobin concentration, higher total bilirubin concentration, lower mean heparin infusion dose, lower body weight, and lower platelet count. Using multivariable Cox modeling, daily plasma free hemoglobin was independently associated with development of renal failure during extracorporeal membrane oxygenation (defined as creatinine > 2 mg/dL [> 176.8 μmol/L] or use of in-line hemofiltration or continuous renal replacement therapy) (hazard ratio, 1.04; 95% CI, 1.02-1.06; p < 0.001), but not mortality (hazard ratio, 1.01; 95% CI, 0.99-1.04; p = 0.389). Hemolysis is common during pediatric extracorporeal membrane oxygenation. Hemolysis may contribute to the development of renal failure, and therapies used to manage renal failure such as in-line hemofiltration and other forms of continuous renal replacement therapy may contribute to hemolysis. Hemolysis was not associated with mortality after controlling for other factors. Monitoring for hemolysis should be a routine part of extracorporeal membrane oxygenation practice, and efforts to reduce hemolysis may improve patient care.

To determine the frequency of hyperoxia and hypocapnia during pediatric extracorporeal membrane oxygenation and their relationships to complications, mortality, and functional status among survivors. Secondary analysis of data collected prospectively by the Collaborative Pediatric Critical Care Research Network. Eight Collaborative Pediatric Critical Care Research Network-affiliated hospitals. Age less than 19 years and treated with extracorporeal membrane oxygenation. Hyperoxia was defined as highest PaO2 greater than 200 Torr (27 kPa) and hypocapnia as lowest PaCO2 less than 30 Torr (3.9 kPa) during the first 48 hours of extracorporeal membrane oxygenation. Functional status at hospital discharge was evaluated among survivors using the Functional Status Scale. Of 484 patients, 420 (86.7%) had venoarterial extracorporeal membrane oxygenation and 64 (13.2%) venovenous; 69 (14.2%) had extracorporeal membrane oxygenation initiated during cardiopulmonary resuscitation. Hyperoxia occurred in 331 (68.4%) and hypocapnia in 98 (20.2%). Hyperoxic patients had higher mortality than patients without hyperoxia (167 [50.5%] vs 48 [31.4%]; p < 0.001), but no difference in functional status among survivors. Hypocapnic patients were more likely to have a neurologic event (49 [50.0%] vs 143 (37.0%]; p = 0.021) or hepatic dysfunction (49 [50.0%] vs 121 [31.3%]; p < 0.001) than patients without hypocapnia, but no difference in mortality or functional status among survivors. On multivariable analysis, factors independently associated with increased mortality included highest PaO2 and highest blood lactate concentration in the first 48 hours of extracorporeal membrane oxygenation, congenital diaphragmatic hernia, and being a preterm neonate. Factors independently associated with lower mortality included meconium aspiration syndrome. Hyperoxia is common during pediatric extracorporeal membrane oxygenation and associated with mortality. Hypocapnia appears to occur less often and although associated with complications, an association with mortality was not observed.