Distress and the Long-Stay Pediatric Intensive Care Unit Admission: A Longitudinal Study of Parents and the Medical Team.

Prolonged critical illness in children has emotional consequences for both parents and providers. In this observational cohort study, we longitudinally surveyed anxiety and depression in parents and moral distress in pediatric intensive care unit (PICU) providers (attendings, fellows, and bedside registered nurses) and explored their trajectories and relationships. Anxiety/depression and provider moral distress were measured using the Hospital Anxiety and Depression Scale and the Moral Distress Thermometer, respectively. The relationships of parental and provider distress were evaluated using Spearman's correlations, and their trajectories and potentially associated variables were explored using quadratic random slope and intercept models. Predetermined associated factors included demographic and clinical factors, including parent psychosocial risk and intubation status. We found parental anxiety and depression decreased over their child's admission, and parental psychosocial risk was significantly associated with anxiety (coefficient = 4.43, p < 0.001). Clinicians in different roles had different mean levels and trajectories of moral distress, with fellows reporting greater distress early in admissions and nurses later in admissions. Parental anxiety/depression and provider distress were significantly, though moderately, correlated. We conclude that anxiety and depression in parents of children with prolonged PICU admissions and the moral distress of their clinicians correlate and vary over time and by provider role.

Parental Adverse Childhood Experiences and Post-PICU Stress in Children and Parents.

OBJECTIVES: Hospitalization in a PICU is a stressful experience for children and their parents, with many experiencing posttraumatic stress disorder (PTSD) after discharge. Risk factors may include preillness traumatic events, such as adverse childhood experiences (ACEs). We sought to assess the feasibility of screening ACEs in parents of children admitted to a PICU, their prevalence, and their association with post-PICU PTSD symptoms in them and their children. DESIGN: Single-center prospective observational study. SETTING: Urban academic children's hospital from January to December 2021. PATIENTS: One hundred forty-five children (2-18 yr old, admitted ≥ 2 d) and their parents. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Data on parental demographics, ACEs, coping skills, and PICU environmental stressors, as well as patient clinical data, were collected. One month after PICU discharge, parents completed inventories assessing PTSD symptoms in them and their children. Bivariate and logistic regression analyses were used to explore associations of ACEs with post-PICU PTSD. Of 145 enrolled parents, 95% completed the ACE questionnaire, 58% of whom reported greater than or equal to 1 ACE, and 14% had substantial (≥ 4) ACEs. Parent and patient follow-up was 79% and 70%, respectively. Sixteen percent of parents had provisional PTSD. Regression analysis showed parents with greater than or equal to 4 ACEs had 10 times greater odds of parental PTSD, compared to parents with less than 4 ACEs, (adjusted odds ratio [aOR] = 10.2; 95% CI, 1.03-100.9; p = 0.047). Fifty-six percent of patients screened at risk for PTSD. There was no association between substantial parental ACEs and patients' risk for PTSD (aOR = 3.5 [95% CI, 0.56-21.31]; p = 0.18). CONCLUSIONS: ACEs were common among parents of critically ill children. Having substantial parental ACEs was associated with provisional parental PTSD after their child's PICU admission, but not with PTSD in the children. Family-centered care that seeks to mitigate post-PICU stress should be mindful of the potential relevance of parental ACEs.

A Focused Review of Long-Stay Patients and the Ethical Imperative to Provide Inpatient Continuity.

Long-stay patients are an impactful, vulnerable, growing group of inpatients in today's (and tomorrow's) tertiary hospitals. They can outlast dozens of clinicians that necessarily rotate on and off clinical service. Yet, care from such rotating clinicians can result in fragmented care due to a lack of continuity that insufficiently meets the needs of these patients and their families. Using long-stay PICU patients as an example, this focused review discusses the impact of prolonged admissions and how our fragmented care can compound this impact. It also argues that it is an ethical imperative to provide a level of continuity of care beyond what is considered standard of care and offers a number of strategies that can provide such continuity.

Primary Intensivists and Nurses for Long-Stay Patients: A Survey of Practices and Perceptions at Academic PICUs.

OBJECTIVES: To determine the prevalence of the utilization of primary intensivists and primary nurses for long-stay patients in large, academic PICU and ascertain how these practices are operationalized and perceived. DESIGN: A cross-sectional survey. SETTING: U.S. PICUs with accredited Pediatric Critical Care Medicine fellowships. SUBJECTS: One senior physician and one senior nurse at each institution. INTERVENTION: None. MEASUREMENTS AND MAIN RESULTS: Separate but largely analogous questionnaires for intensivists and nurses were created using an iterative process to enhance content/face validity and readability. Sixty-seven intensivists (representing 93% of the 72 institutions with fellowship programs and their PICUs) and 59 nurses (representing 82%) responded. Twenty-four institutions utilize primary intensivists; 30 utilize primary nurses; and 13 utilize both. Most institutions use length of stay and/or other criteria (e.g., medical complexity) for eligibility. Commonly, not all patients that meet eligibility criteria receive primaries. Primary providers are overwhelmingly volunteers, and often only a fraction of providers participate. Primary intensivists at a large majority (>75%) of institutions facilitate information sharing and decision-making, attend family/team meetings, visit patients/families regularly, and are otherwise available upon request. Primary nurses at a similar majority of institutions provide consistent bedside care, facilitate information sharing, and attend family/team meetings. A large majority of respondents thought that primary intensivists increase patient/family satisfaction, reduce their stress, improve provider communication, and reduce conflict, whereas primary nurses similarly increase patient/family satisfaction. More than half of respondents shared that these practices can sometimes require effort (e.g., time and emotion), complicate decision-making, and/or reduce staffing flexibility. CONCLUSIONS: Primary practices are potential strategies to augment rotating PICU care models and better serve the needs of long-stay and other patients. These practices are being utilized to varying extents and with some operationalization uniformity at large, academic PICUs.

Parent and Provider Perspectives on Primary Continuity Intensivists and Nurses for Long-Stay Pediatric Intensive Care Unit Patients.

Rationale: Primary continuity intensivists and nurses for long-stay patients (LSPs) in pediatric intensive care units (PICUs) are understudied strategies used to mitigate the fragmented care of typical rotating care models. Objectives: To investigate the advantages and disadvantages of primary continuity intensivists and nurses for LSPs as perceived by their parents and PICU providers. Methods: We conducted a prospective cross-sectional mixed-methods study of the perspectives of parents whose children were admitted to a PICU for >10 days and had one or more complex chronic conditions regarding the care provided by their PICU intensivists and nurses. As part of a trial, patients had been randomized to care provided by a rotating on-service intensivist who changed weekly and by PICU nurses who changed every 12 hours (usual care group) or to care provided by the same on-service intensivist plus a primary continuity intensivist and primary nurses (primary group). In addition, PICU providers (intensivists, fellows, and nurses) were queried for their perspectives on primary intensivists and nurses. Novel questionnaires, assessed for content and face validity and for readability, were used. The parental questionnaire involved indicating their degree of agreement with 16 statements about their children's care. The provider questionnaire involved rating potential advantages of primary continuity intensivists and nurses and estimating the frequency of disadvantages. Descriptive statistics and divergent stack bar charts were used; parents' and providers' responses were compared, stratified by their children's group (usual care or primary) and provider role, respectively. Results: The parental response rate was 71% (120 completed questionnaires). For 10 of 16 statements, parents whose children had primary continuity intensivists and nurses indicated significantly more positive perceptions of care (e.g., communication, listening, decision making, problems due to changing providers). The provider response rate was 61% (117 completed questionnaires); more than 80% believed that primary intensivists and nurses were highly or very highly beneficial for LSPs. Providers perceived more benefits for patients/families (e.g., informational continuity, facilitating and expediting decision making) than for staff/institutions (e.g., staff satisfaction). Providers reported associated stress, expenditure of time and effort, and decreased staffing flexibility with primary practices. Conclusions: Perceived benefits of primary continuity intensivists and nurses by both parents and providers support more widespread adoption and study of these continuity strategies.

Group Concept Mapping Conceptualizes High-Quality Care for Long-Stay Pediatric Intensive Care Unit Patients and Families.

OBJECTIVE: To describe and conceptualize high-quality care for long-stay pediatric intensive care unit (PICU) patients using group concept mapping (GCM). STUDY DESIGN: We convened an expert panel to elucidate domains of high-quality care for this growing patient population for which transitory care models fail to meet their needs. Thirty-one healthcare professionals and 7 parents of patients with previous prolonged PICU hospitalizations comprised a diverse, interprofessional multidisciplinary panel. Participants completed the prompt "For PICU patients and families experiencing prolonged lengths of stay, high quality care from the medical team includes ______", with unlimited free text responses. Responses were synthesized into individual statements, then panelists sorted them by idea similarity and rated them by perceived importance. Statement analysis using GCM software through GroupWisdom generated nonoverlapping clusters representing domains of high-quality care. RESULTS: Participants submitted 265 prompt responses representing 313 unique ideas, resulting in 78 final statements for sorting and rating. The resultant cluster map best representing the data contained 8 domains: (1) Family-Centered Care and Shared Decision Making, (2) Humanizing the Patient, (3) Clinician Supports and Resources, (4) Multidisciplinary Coordination of Care, (5) Family Well-Being, (6) Anticipatory Guidance and Care Planning, (7) Communication, and (8) Continuity of Care. CONCLUSIONS: GCM empowered a panel of healthcare professionals and parents to explicitly describe and conceptualize high-quality care for patients and families experiencing prolonged PICU stays. This information will aid the effort to address shortcomings of transitory PICU care models.

Continuity Strategies for Long-Stay PICU Patients: Consensus Statements From the Lucile Packard Foundation PICU Continuity Panel.

OBJECTIVES: To develop consensus statements on continuity strategies using primary intensivists, primary nurses, and recurring multidisciplinary team meetings for long-stay patients (LSPs) in PICUs. PARTICIPANTS: The multidisciplinary Lucile Packard Foundation PICU Continuity Panel comprising parents of children who had prolonged PICU stays and experts in several specialties/professions that care for children with medical complexity in and out of PICUs. DESIGN/METHODS: We used modified RAND Delphi methodology, with a comprehensive literature review, Delphi surveys, and a conference, to reach consensus. The literature review resulted in a synthesized bibliography, which was provided to panelists. We used an iterative process to generate draft statements following panelists' completion of four online surveys with open-ended questions on implementing and sustaining continuity strategies. Panelists were anonymous when they voted on revised draft statements. Agreement of 80% constituted consensus. At a 3-day virtual conference, we discussed, revised, and re-voted on statements not reaching or barely reaching consensus. We used Grading of Recommendations Assessment, Development, and Evaluation to assess the quality of the evidence and rate the statements' strength. The Panel also generated outcome, process, and balancing metrics to evaluate continuity strategies. RESULTS: The Panel endorsed 17 consensus statements in five focus areas of continuity strategies (Eligibility Criteria, Initiation, Standard Responsibilities, Resources Needed to Implement, Resources Needed to Sustain). The quality of evidence of the statements was low to very low, highlighting the limited evidence and the importance of panelists' experiences/expertise. The strength of the statements was conditional. An extensive list of potential evaluation metrics was generated. CONCLUSIONS: These expert/parent-developed consensus statements provide PICUs with novel summaries on how to operationalize, implement, and sustain continuity strategies for LSP, a rapidly growing, vulnerable, resource-intensive population in PICUs.

The Child With Severe Chronic Illness in the ICU: A Concise Review.

OBJECTIVES: Children with severe chronic illness are a prevalent, impactful, vulnerable group in PICUs, whose needs are insufficiently met by transitory care models and a narrow focus on acute care needs. Thus, we sought to provide a concise synthetic review of published literature relevant to them and a compilation of strategies to address their distinctive needs. DATA SOURCES: English language articles were identified in MEDLINE using a variety of phrases related to children with chronic conditions, prolonged admissions, resource utilization, mortality, morbidity, continuity of care, palliative care, and other critical care topics. Bibliographies were also reviewed. STUDY SELECTION: Original articles, review articles, and commentaries were considered. DATA EXTRACTION: Data from relevant articles were reviewed, summarized, and integrated into a narrative synthetic review. DATA SYNTHESIS: Children with serious chronic conditions are a heterogeneous group who are growing in numbers and complexity, partly due to successes of critical care. Because of their prevalence, prolonged stays, readmissions, and other resource use, they disproportionately impact PICUs. Often more than other patients, critical illness can substantially negatively affect these children and their families, physically and psychosocially. Critical care approaches narrowly focused on acute care and transitory/rotating care models exacerbate these problems and contribute to ineffective communication and information sharing, impaired relationships, subpar and untimely decision-making, patient/family dissatisfaction, and moral distress in providers. Strategies to mitigate these effects and address these patients' distinctive needs include improving continuity and communication, primary and secondary palliative care, and involvement of families. However, there are limited outcome data for most of these strategies and little consensus on which outcomes should be measured. CONCLUSIONS: The future of pediatric critical care medicine is intertwined with that of children with serious chronic illness. More concerted efforts are needed to address their distinctive needs and study the effectiveness of strategies to do so.

A Single-Centered Randomized Controlled Trial of Primary Pediatric Intensivists and Nurses.

Background: For long-stay patients (LSP) in pediatric intensive care units (PICU), frequently rotating providers can lead to ineffective information sharing and retention, varying goals and timelines, and delayed decisions, likely contributing to prolonged admissions. Primary intensivists (one physician serves as a consistent resource for the patient/family and PICU providers) and primary nurses (a small team of PICU nurses provide consistent bedside care) seek to augment usual transitory PICU care, by enhancing continuity and, potentially, decreasing length of stay (LOS). Methods: A single-centered, partially blinded randomized controlled trial of primary intensivists and nurses versus usual care. PICU patients admitted for or expected to be admitted for >10 days and who had ≥1 complex chronic condition were eligible. A block randomization with 1:1 allocation was used. The primary outcome was PICU LOS. Multiple secondary outcomes were explored. Results: Two hundred LSPs were randomized-half to receive primaries and half to usual care. The two groups were not significantly different in their baseline and admission characteristics. LSPs randomized to receive primaries had a shorter, but non-significant, mean LOS than those randomized to usual care (32.5 vs. 37.1 days, respectively, p = .19). Compared to LSPs in the usual care group, LSPs in the primary group had fewer unplanned intubations. Among LSPs that died, DNR orders were more prevalent in the primary group. Other secondary outcome and balance metrics were not significantly different between the two groups. Conclusion: Primary intensivists and nurses may be an effective strategy to counteract transitory PICU care and serve the distinctive needs of LSPs. However, additional studies are needed to determine the ways and to what extent they may accomplish this.

Long-Term Increases in Mental Disorder Diagnoses After Invasive Mechanical Ventilation for Severe Childhood Respiratory Disease: A Propensity Matched Observational Cohort Study.

OBJECTIVES: To evaluate neurodevelopmental and mental disorders after PICU hospitalization in children requiring invasive mechanical ventilation for severe respiratory illness. DESIGN: Retrospective longitudinal observational cohort. SETTING: Texas Medicaid Analytic eXtract data from 1999 to 2012. PATIENTS: Texas Medicaid-enrolled children greater than or equal to 28 days old to less than 18 years old hospitalized for a primary respiratory illness, without major chronic conditions predictive of abnormal neurodevelopment. INTERVENTIONS: We examined rates of International Classification of Diseases, 9th revision-coded mental disorder diagnoses and psychotropic medication use following discharge among children requiring invasive mechanical ventilation for severe respiratory illness, compared with general hospital patients propensity score matched on sociodemographic and clinical characteristics prior to admission. Children admitted to the PICU for respiratory illness not necessitating invasive mechanical ventilation were also compared with matched general hospital patients as a negative control exposure. MEASUREMENTS AND MAIN RESULTS: Of 115,335 eligible children, 1,351 required invasive mechanical ventilation and were matched to 6,755 general hospital patients. Compared with general hospital patients, children requiring invasive mechanical ventilation had increased mental disorder diagnoses (hazard ratio, 1.43 [95% CI, 1.26-1.64]; p < 0.0001) and psychotropic medication use (hazard ratio, 1.67 [1.34-2.08]; p < 0.0001) following discharge. Seven-thousand seven-hundred eighty children admitted to the PICU without invasive mechanical ventilation were matched to 38,900 general hospital patients and had increased mental disorder diagnoses (hazard ratio, 1.08 [1.02-1.15]; p = 0.01) and psychotropic medication use (hazard ratio, 1.11 [1.00-1.22]; p = 0.049). CONCLUSIONS: Children without major comorbidity requiring invasive mechanical ventilation for severe respiratory illness had a 43% higher incidence of subsequent mental disorder diagnoses and a 67% higher incidence of psychotropic medication use. Both increases were substantially higher than in PICU patients with respiratory illness not necessitating invasive mechanical ventilation. Invasive mechanical ventilation is a life-saving therapy, and its application is interwoven with underlying health, illness severity, and PICU management decisions. Further research is required to determine which factors related to invasive mechanical ventilation and severe respiratory illness are associated with abnormal neurodevelopment. Given the increased risk in these children, identification of strategies for prevention, neurodevelopmental surveillance, and intervention after discharge may be warranted.

The impact of eligibility for primary attendings and nurses on PICU length of stay.

PURPOSE: To examine whether primary attendings and/or nurses impact pediatric intensive care unit (PICU) length of stay (LOS) in long-stay patients (LSP). MATERIALS AND METHODS: Retrospective observational cross-sectional study from 2012 to 2016 of 29,170 LSP (LOS ≥ 10 days) admitted to 64 PICUs that participated in the Virtual Pediatric Systems, LLC. Generalized linear mixed models were used to examine the association between being eligible for primary practices and LOS. Secondary outcomes of proportions of limitations and withdrawal of aggressive, life-sustaining interventions were also explored. RESULTS: After controlling for several factors, being eligible for primary nurses and for primary attendings and nurses were associated with significantly lower mean LOS (8.9% and 9.7% lower, respectively), compared to not being eligible for any primary practice. Being eligible for primary attendings was associated with significantly higher mean LOS (9.6% higher). When the primary attendings were used for larger proportions of LSP, the practice was associated with significantly lower mean LOS. Limitations and withdrawal of aggressive interventions were more common in LSPs cared for in PICUs that utilized primary attendings. CONCLUSIONS: The findings of lower LOS in LSP who were eligible for primary practices should induce more rigorous research on the impact of these primary practices.

Development and validation of a novel informational booklet for pediatric long-term ventilation decision support.

OBJECTIVES: To provide accessible, uniform, comprehensive, and balanced information to families deciding whether to initiate long-term ventilation (LTV) for their child, we sought to develop and validate a novel informational resource. METHODS: The Ottawa Decision Support Framework was followed. Previous interviews with 44 lay and 15 professional stakeholders and published literature provided content for a booklet. Iterative versions were cognitive tested with six parents facing decisions and five pediatric intensivists. Ten parents facing decisions evaluated the booklet using the Preparation for Decision Making Scale and reported their decisional conflict, which was juxtaposed to the conflict of 21 parents who did not read it, using the Decisional Conflict Scale. Twelve home ventilation program directors evaluated the booklet's clinical sensibility and sensitivity, using a self-designed six-item questionnaire. Data presented using summary statistics. RESULTS: The illustrated booklet (6th-grade reading level) has nine topical sections on chronic respiratory failure and invasive and noninvasive LTV, including the option to forgo LTV. Ten parents who read the booklet rated it as helping "Quite a bit" or more on all items of the Preparation for Decision Making Scale and had seemingly less decisional conflict than 21 parents who did not. Twelve directors rated it highly for clinical sensibility and sensitivity. CONCLUSIONS: The LTV booklet was rigorously developed and favorably evaluated. It offers a resource to improve patient/family knowledge, supplement shared decision-making, and reduce decisional conflict around LTV decisions. Future studies should validate it in other settings and further study its effectiveness.

Liberation and mortality outcomes in pediatric long-term ventilation: A qualitative systematic review.

OBJECTIVE: To provide a systematic review of liberation from positive pressure ventilation and mortality of children with chronic respiratory failure who used long-term invasive and noninvasive ventilation (LTV). METHODS: Papers published from 1980 to 2018 were identified using Pubmed MEDLINE, Ovid MEDLINE, Embase, and Cochrane databases. Search results were limited to English-language papers with (a) patients less than 22 years at initiation, (b) patients who used invasive ventilation (IV) via tracheostomy or noninvasive ventilation (NIV), and (c) data on mortality or liberation from LTV. Data were presented using descriptive statistics; changes in outcomes over time were explored using linear regression. Follow-up variability, cohort heterogeneity, and insufficient data precluded combining data to estimate incidences or rates. RESULTS: One hundred and thirty papers with 12 704 patients were included. The median number of patients was 37 (interquartile range [IQR] 17-74, range 6-3802). Twenty-five percent of patients were initiated on IV; 75% on NIV. The maximum follow-up ranged from 0.5 to 31.8 years (median 8.8 years). The median proportion of patients liberated in these papers was 3% (IQR 0%-21%). The median proportion of mortality was 18% (IQR 8%-27%). Proportions of liberation and mortality did not significantly change over time. Progression of underlying disease (44%), respiratory illness (19%), and LTV accident (11%) were the most common causes of death. CONCLUSIONS: These papers collectively show most patients survive for many years using LTV; in many subgroups, death is a more common outcome than liberation. However, the limitations of these papers preclude robust prognostication.

Decisions for Long-Term Ventilation for Children. Perspectives of Family Members.

Rationale: The decision whether to initiate or forgo long-term ventilation for children can be difficult and impactful. However, little has been published on the informational and decisional needs of families facing this decision.Objectives: To assess what families with children with chronic respiratory failure and life-limiting conditions need and want for informed decision-making.Methods: English- and Spanish-speaking parents who were facing (contemporaneous decision makers) or had previously faced (former decision makers) a decision regarding invasive or noninvasive long-term ventilation for their children were recruited using convenience sampling. Patients who were older and cognitively capable also were invited to participate. We performed semistructured interviews using an open-ended interview guide developed de novo to assess parents' decisional needs and experiences. Qualitative data analysis used a thematic approach based on framework analysis, and thematic saturation was a goal.Results: A sample of 44 parents and 2 patients from 43 families was interviewed. All contemporaneous decision makers (n = 28) favored or believed that they would choose long-term ventilation. Fifteen of 16 former decision makers chose long-term ventilation. Thematic saturation was achieved from the perspective of parents who favored or chose long-term ventilation. Four domains were identified: parents' emotional and psychological experiences with decision-making, parents' informational needs, parents' communication and decision support needs, and parents' views on the option not to initiate long-term ventilation. For most parents, making a decision regarding long-term ventilation was stressful, even though they articulated goals and values that could/did guide their decision-making. In general, parents wanted comprehensive information, including what life would be like at home for the child and the family. They wanted their medical providers to be honest, tactful, patient, and supportive. Parents reported that they felt being presented with the option not to initiate was acceptable.Conclusions: In this study, we identified specific informational and decision-making needs regarding long-term ventilation that parents facing decisions feel are important. These data suggest that providers should present families with comprehensive, balanced information on the impact of long-term ventilation and, when the child has a profoundly serious and life-limiting condition, explore the option not to initiate long-term ventilation.

A multi-institutional analysis of children on long-term non-invasive respiratory support and their outcomes.

OBJECTIVES: To characterize a multi-institutional cohort of children with chronic respiratory failure that use long-term, non-invasive respiratory support, perform a time-to-event analysis of transitions to transtracheal ventilation and identify factors associated with earlier transition to transtracheal ventilation. STUDY DESIGN: A retrospective cohort study of patients less than 21 years of age with diagnoses associated with chronic respiratory failure and discharged on non-invasive respiratory support was performed using data from the Pediatric Health Information System (PHIS) between 2007 and 2015. Demographic and clinical characteristics, as well as times from index discharge on non-invasive support to transtracheal ventilation were presented. A competing risk regression model was fitted to estimate factors associated with earlier transition to transtracheal ventilation. RESULTS: A total of 3802 patients were identified. Their median age at index discharge was 10.4 years (interquartile range [IQR] 4.1-14.9). Of these patients, 337 (8.9%) transitioned to transtracheal ventilation and transitioned at a median of 11.5 months (IQR 4.6-26) post-index discharge, or a median age of 9.3 years (IQR 4.2-14.5). Competing risk modeling demonstrated that patients who were older or whose discharge occurred later in the study period had lower hazards of earlier transition to transtracheal ventilation, whereas patients with anoxia/encephalopathy and quadriplegia had higher hazards of earlier transitioning. CONCLUSIONS: Most patients on long-term, non-invasive respiratory support who progress to transtracheal ventilation transition do so within a few years of support initiation. Various characteristics were associated with earlier risk of transitioning to transtracheal ventilation. This information may enhance anticipatory guidance for this population.

Survey of financial burden of families in the U.S. with children using home mechanical ventilation.

AIM: To describe and quantify the out-of-pocket expenses, employment loss, and other financial impact related to caring for a child using home mechanical ventilation (HMV). METHOD: We conducted a cross-sectional survey of U.S. families with children who used HMV. Eligible participants were invited to complete a questionnaire addressing household and child characteristics, out-of-pocket expenses, employment loss/reduction, and financial stress. Participants were recruited with the help of three national patient registries. RESULTS: Two hundred twenty-six participants from 32 states (152 with children who used invasive ventilation and 74 with children who used noninvasive ventilation) completed the questionnaire. Participants' median reported yearly household income was $90 000 (IQR 70 000-150 000). The median amount paid in out-of-pocket expenses in the previous 3 months to care for their child using HMV totaled $3899 (IQR $2900-4550). Reported levels of financial stress decreased as income increased; 37-60% of participants, depending on income quintile, reported moderate financial stress with "some" of that stress due to their out-of-pocket expenses. A substantial majority reported one or more household members stopped or reduced work and took unpaid weeks off of work to care for their child. CONCLUSION: The financial impact of caring for a child using HMV is considerable for some families. Providers need to understand these financial burdens and should inform families of them to help families anticipate and plan for them.

Repeated Critical Illness and Unplanned Readmissions Within 1 Year to PICUs.

OBJECTIVES: To determine the occurrence rate of unplanned readmissions to PICUs within 1 year and examine risk factors associated with repeated readmission. DESIGN: Retrospective cohort analysis. SETTING: Seventy-six North American PICUs that participated in the Virtual Pediatric Systems, LLC (VPS, LLC, Los Angeles, CA). PATIENTS: Ninety-three thousand three hundred seventy-nine PICU patients discharged between 2009 and 2010. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Index admissions and unplanned readmissions were characterized and their outcomes compared. Time-to-event analyses were performed to examine factors associated with readmission within 1 year. Eleven percent (10,233) of patients had 15,625 unplanned readmissions within 1 year to the same PICU; 3.4% had two or more readmissions. Readmissions had significantly higher PICU mortality and longer PICU length of stay, compared with index admissions (4.0% vs 2.5% and 2.5 vs 1.6 d; all p < 0.001). Median time to readmission was 30 days for all readmissions, 3.5 days for readmissions during the same hospitalization, and 66 days for different hospitalizations. Having more complex chronic conditions was associated with earlier readmission (adjusted hazard ratio, 2.9 for one complex chronic condition; hazard ratio, 4.8 for two complex chronic conditions; hazard ratio, 9.6 for three or more complex chronic conditions; all p < 0.001 compared no complex chronic condition). Most specific complex chronic condition conferred a greater risk of readmission, and some had considerably higher risk than others. CONCLUSIONS: Unplanned readmissions occurred in a sizable minority of PICU patients. Patients with complex chronic conditions and particular conditions were at much higher risk for readmission.

Pediatric intermediate care and pediatric intensive care units: PICU metrics and an analysis of patients that use both.

PURPOSE: To examine how intermediate care units (IMCUs) are used in relation to pediatric intensive care units (PICUs), characterize PICU patients that utilize IMCUs, and estimate the impact of IMCUs on PICU metrics. MATERIALS & METHODS: Retrospective study of PICU patients discharged from 108 hospitals from 2009 to 2011. Patients admitted from or discharged to IMCUs were characterized. We explored the relationships between having an IMCU and several PICU metrics: physical length-of-stay (LOS), medical LOS, discharge wait time, admission severity of illness, unplanned PICU admissions from wards, and early PICU readmissions. RESULTS: Thirty-three percent of sites had an IMCU. After adjusting for known confounders, there was no association between having an IMCU and PICU LOS, mean severity of illness of PICU patients admitted from general wards, or proportion of PICU readmissions or unplanned ward admissions. At sites with an IMCU, patients waited 3.1h longer for transfer from the PICU once medically cleared (p<0.001). CONCLUSIONS: There was no association between having an IMCU and most measures of PICU efficiency. At hospitals with an IMCU, patients spent more time in the PICU once they were cleared for discharge. Other ways that IMCUs might affect PICU efficiency or particular patient populations should be investigated.

Decisions around Long-term Ventilation for Children. Perspectives of Directors of Pediatric Home Ventilation Programs.

RATIONALE: The decision of whether to initiate or forgo long-term ventilation (LTV) for children with life-limiting conditions can be complex and impactful. Providers are responsible for helping families to understand the consequences of their options and guiding them through shared decision-making, but little has been published on how to do this. OBJECTIVES: To assess how directors of pediatric home ventilation programs facilitate shared decision-making with families facing decisions of whether to initiate or forgo LTV for their children with life-limiting conditions. In addition, to assess directors' perspectives on these families' decisional needs. METHODS: Purposeful recruiting of directors/codirectors of pediatric home ventilation programs at children's hospitals was used. We performed semistructured interviews using an open-ended interview guide developed de novo to assess their approach to informed, shared decision-making around LTV and their perspectives on these decisions. Qualitative data analysis was conducted using a thematic approach based on framework analysis in which thematic saturation was achieved. RESULTS: A sample of 15 experienced physician directors across North America was interviewed. All (15/15) inform families of the potential benefits and burdens/risks of LTV for the child and of the option to forgo LTV. All stress to families the physical, emotional, and social impact of caring for a child using LTV on the family; 12 directors also highlight the financial impact. All recommend that decision-making around LTV should be interdisciplinary, initiated early, and not rushed; nine described their approach as guided by the family's goals for the child and their family. All recommend that providers be transparent, candid, active listeners, and supportive. All directors believe that the family's decision should be respected, but vary in the extent to which they recommend an option to families. They described barriers to decision-making that stem from families, providers, and other sources. CONCLUSIONS: As providers who follow children using LTV, directors of pediatric home ventilation programs have perspectives regarding the decisional needs of these families and how to meet them that can help inform and shape the practices of other providers who assist families facing this decision.