post-PICU Discharge Research Articles

Patient follow-up after discharge from the paediatric intensive care unit: A scoping review.

Most children admitted to a paediatric intensive care unit (PICU) now survive because of improvements in care. Many studies have identified the psychological, functional, cognitive and social impact of PICU admission on a child and their family. However, expert recommendations on follow-up are lacking. To identify the strategies of clinical follow-up after PICU discharge performed from 2001 to 2021. This scoping review was undertaken between January and April 2021 using three databases: PubMed, EMBASE and CINAHL. The search strategy consisted of a combination of keywords, including PICU, post-PICU discharge and follow-up in articles published between 2001 and 2021. The results are reported according to PRISMA-ScR guidelines. Six-hundred and fifty-two articles were identified and 68 were analysed. Median age was 4.5 years and the two main reasons for PICU admission were cardiorespiratory failure and sepsis. Median length of PICU stay was 8 days. Most follow-up was carried out by research units (88%), while 6% of studies reported follow-up by a multidisciplinary PICU team. The most common follow-up schedule included an assessment at PICU discharge, and then at 3, 6 and 12 months. Follow-up for >1 year was reported in 20% of studies. One third of studies focused on follow-up quality of life and neurological outcomes. Parental emotional impact was assessed in 7% of studies. Follow-up after PICU discharge was highly heterogeneous regarding timing, health care professionals involved and assessment methods. There is an urgent need for standardization and coordination of PICU follow-up because of the increasing number of patients impacted by a PICU stay. Although most patients admitted to a paediatric intensive care unit (PICU) now survive; they may develop paediatric post-intensive care syndrome (PICS-P). To our knowledge, there are currently no clinical guidelines regarding follow-up after PICU discharge. This review summarizes current approaches to follow-up after PICU discharge, including how it is carried out, who is involved and what the main aims of assessment are.

Associations of Patient and Parent Characteristics With Parental Decision Regret in the PICU: A Secondary Analysis of the 2015-2017 Navigate Randomized Comparative Trial.

To identify self-reported meaningful decisions made by parents in the PICU and to determine patient and parent characteristics associated with the development of parental decision regret, a measurable, self-reported outcome associated with psychologic morbidity. Secondary analysis of the Navigate randomized comparative trial (NCT02333396). Two tertiary, academic PICUs. Spanish- or English-speaking parents of PICU patients aged less than 18 years who were expected to remain in the PICU for greater than 24 hours from time of enrollment or who had a risk of mortality greater than 4% based on Pediatric Index of Mortality 2 score. None. Between April 2015 and March 2017, 233 parents of 209 patients completed a survey 3-5 weeks post-PICU discharge which included the Decision Regret Scale (DRS), a 5-item, 5-point Likert scale tool scored from 0 (no regret) to 100 (maximum regret). Two hundred nine patient/parent dyads were analyzed. The decisions parents reported as most important were categorized as: procedure, respiratory support, medical management, parent-staff interactions and communication, symptom management, fluid/electrolytes/nutrition, and no decision. Fifty-one percent of parents had some decision regret (DRS > 0) with 19% scoring in the moderate-severe range (DRS 26-100). The mean DRS score was 12.7 ( sd 18.1). Multivariable analysis showed that parental Hispanic ethnicity was associated with greater odds ratio (OR 3.12 [95% CI, 1.36-7.13]; p = 0.007) of mild regret. Being parents of a patient with an increased PICU length of stay (LOS) or underlying respiratory disease was associated with greater odds of moderate-severe regret (OR 1.03 [95% CI, 1.009-1.049]; p = 0.004 and OR 2.91 [95% CI, 1.22-6.94]; p = 0.02, respectively). Decision regret was experienced by half of PICU parents in the 2015-2017 Navigate study. The characteristics associated with decision regret (parental ethnicity, PICU LOS, and respiratory disease) are easily identifiable. Further study is needed to understand what contributes to regret in this population and what interventions could provide support and minimize the development of regret.

Mortality and associated factors among children admitted to an intensive care unit in muhimbili national hospital, from the time of admission to three months after discharge: a prospective cohort study

BackgroundMortality of children admitted to Intensive Care Units (ICU) is higher in low-to-middle-income countries (LMICs) as compared to high-income countries (HICs). There is paucity of information on outcomes following discharge from ICU, especially from sub-Saharan Africa region. This study was conducted to determine mortality and its associated factors among children admitted to Pediatric ICU (PICU) at Muhimbili National Hospital, from admission to three months after discharge.MethodologyThis was a hospital-based prospective cohort study conducted between July 2021 and May 2022, among children admitted to PICU who were followed up for 3-month after discharge. Structured questionnaires were used to collect data from their medical charts. Telephone interviews were made after discharge. Medical records and verbal autopsy were used to determine the cause of death after discharge. Cox regression analysis was performed to assess the association between variables. A p-value of < 0.05 was considered statistically significant. Survival after PICU discharge was estimated by Kaplan - Meier curve.ResultsOf 323 children recruited, 177(54.8%) were male, with a median age of 17 months (1-168). The leading cause of PICU admission was severe sepsis 90/323(27.9%). A total of 161/323 children died, yielding an overall mortality of 49.8%. Of 173 children discharged from PICU, 33(19.1%) died. The leading cause of death among children who died in the general ward or as readmission into PICU was sepsis 4/17(23.5%). Respiratory diseases 4/16(25.0%) were the commonest cause of death among those who died after hospital discharge. Independent predictors of overall mortality included single organ dysfunction with hazard ratio(HR):5.97, 95% confidence interval (CI)(3.05–12.26)] and multiple organ dysfunction [HR:2.77,95%CI(1.03–2.21)]. Chronic illness[HR:8.13,95%CI(2.45–27.02)], thrombocytosis [HR:3.39,95%CI(1.32–8.73)], single[HR:3.57,95%CI(1.42–9.03)] and multiple organ dysfunction[HR:3.11,95%CI(1.01–9.61)] independently predicted post-PICU discharge mortality.ConclusionOverall mortality and post- PICU discharge mortality were high and more likely to affect children with organ dysfunction, chronic illness, and thrombocytosis. The leading causes of mortality post- PICU discharge were sepsis and respiratory diseases. There is a need for a focused follow up plan of children post- PICU discharge, further research on the long term survival and strategies to improve it.

Post-Intensive Care Sequelae in Pediatrics-Results of an Early Rehabilitation Implementation Study.

To compare post-PICU discharge functioning, health-related quality of life (HRQL), and parental stress before and after the implementation of an early rehabilitation bundle. Prospective cohort substudy within an early rehabilitation implementation program, conducted at the PICUs at McMaster Children's Hospital and London Health Sciences, London, Ontario, Canada. A bundle consisting of: 1) analgesia-first sedation; 2) delirium monitoring and prevention; and 3) early mobilization. Patients with an anticipated 48-hour PICU length of stay were approached for consent to participate. Critically ill children with an anticipated 48-hour PICU length of stay were approached for consent to participate. Patient-/proxy-reported outcome measures were assessed at baseline, PICU discharge, and 1 and 3 months post-PICU discharge using: 1) Pediatric Evaluation of Disability Inventory Computer Adaptive Test to assess physical, social, cognitive, and responsibility/caregiver domains of functioning; 2) KIDSCREEN to assess HRQL; and 3) the Pediatric Inventory for Parents to assess caregiver stress. A total of 117 participants were enrolled. Patient demographic characteristics were similar in the pre- and post-intervention groups. Following bundle implementation, 30 of 47 respondents (63.8%) experienced functional decline and 18 of 45 (40%) experienced low HRQL at PICU discharge. Eighteen of 36 (50%) at 1 month and 14 of 38 (36.8%) at 3 months experienced either persistent functional decline and/or low HRQL; 2.8% and 2.6% at 1- and 3-month follow-up, respectively, experienced both persistent functional decline and low HRQL. There were no significant differences in the rates of persistent functional decline, low HRQL, or caregiver stress scores post-bundle compared with pre-rehabilitation bundle implementation. We were unable to adequately determine the efficacy of a rehabilitation bundle on patient-centered outcomes as this substudy was not powered for these outcomes. Our results did reveal that persistent low functioning is common in PICU survivors, more common than low HRQL, while experiencing both functional decline and low HRQL was uncommon.

Design and rationale of the Post-Intensive Care Syndrome – paediatrics (PICS-p) Longitudinal Cohort Study

IntroductionAs paediatric intensive care unit (PICU) mortality declines, there is growing recognition of the morbidity experienced by children surviving critical illness and their families. A comprehensive understanding of the adverse...

Perceived potentially inappropriate treatment in the PICU: frequency, contributing factors and the distress it triggers.

Potentially inappropriate treatment in critically ill adults is associated with healthcare provider distress and burnout. Knowledge regarding perceived potentially inappropriate treatment amongst pediatric healthcare providers is limited. Determine the frequency and factors associated with potentially inappropriate treatment in critically ill children as perceived by providers, and describe the factors that providers report contribute to the distress they experience when providing treatment perceived as potentially inappropriate. Prospective observational mixed-methods study in a single tertiary level PICU conducted between March 2 and September 14, 2018. Patients 0-17 years inclusive with: (1) ≥1 organ system dysfunction (2) moderate to severe mental and physical disabilities, or (3) baseline dependence on medical technology were enrolled if they remained admitted to the PICU for ≥48 h, and were not medically fit for transfer/discharge. The frequency of perceived potentially inappropriate treatment was stratified into three groups based on degree of consensus (1, 2 or 3 providers) regarding the appropriateness of ongoing active treatment per enrolled patient. Distress was self-reported using a 100-point scale. Of 374 patients admitted during the study, 133 satisfied the inclusion-exclusion criteria. Eighteen patients (unanimous - 3 patients, 2 providers - 7 patients; single provider - 8 patients) were perceived as receiving potentially inappropriate treatment; unanimous consensus was associated with 100% mortality on 3-month follow up post PICU discharge. Fifty-three percent of providers experienced distress secondary to providing treatment perceived as potentially inappropriate. Qualitative thematic analysis revealed five themes regarding factors associated with provider distress: (1) suffering including a sense of causing harm, (2) conflict, (3) quality of life, (4) resource utilization, and (5) uncertainty. While treatment perceived as potentially inappropriate was infrequent, provider distress was commonly observed. By identifying specific factor(s) contributing to perceived potentially inappropriate treatment and any associated provider distress, organizations can design, implement and assess targeted interventions.

Challenges of Families of Patients Hospitalized in the PICU: A Preplanned Secondary Analysis From the Navigate Dataset.

To describe challenges experienced by parents of children hospitalized in the PICU during PICU admission as reported by family navigators. A preplanned secondary analysis of open-response data coded via inductive qualitative approach from the Navigate randomized controlled trial (RCT) dataset (ID NCT02333396). Two university-affiliated PICUs in the Midwestern United States as part of an RCT. Two hundred twenty-four parents of 190 PICU patients. In 2015-2017, trained family navigators assessed and addressed parent needs, offered weekly family meetings, and provided post-PICU discharge parent check-ins as part of a study investigating the effectiveness of a communication support intervention ("PICU Supports"). We analyzed qualitative data recorded by family navigators weekly across 338 encounters. Navigators described families' "biggest challenge," "communication challenges," and ways the team could better support the family. We used an inductive qualitative coding approach and a modified member-checking exercise. The most common difficulties included home life , hospitalization , and diagnosis distress (45.2%, 29.0%, and 17.2% of families, respectively). Navigators often identified that parents had co-occurring challenges. Communication was identified as a "biggest challenge" for 8% of families. Communication challenges included lack of information, team communication , and communication quality (7.0%, 4.8%, and 4.8% of families, respectively). Suggestions for improving care included better medical communication, listening, rapport, and resources. This study describes families' experiences and challenges assessed throughout the PICU stay. Family navigators reported families frequently experience stressors both internal and external to the hospital environment, and communication challenges between families and providers may be additional sources of distress. Further research should develop and assess interventions aimed at improving provider-family communication and reducing stressors outside the hospitalization itself, such as home life difficulties.

Patient and Family Experience With Discharge Directly Home From the Pediatric ICU.

Children are increasingly discharged directly from the PICU. Transitions have been recognized as a period of increased patient and caregiver stress and risk of adverse events. No study has evaluated patient and caregiver outcomes after direct discharge from the PICU. This study aimed to explore the family's experiences with discharge directly home (DDH) from the PICU. This exploratory mixed-methods study was conducted in the PICU of the Institution is Sainte-Justine Hospital from February to July 2021. We included families of children expected to be DDH within 12 hours. Semistructured interviews were conducted at discharge, followed by telephone interviews 7 and 28 days post-PICU discharge. We measured comfort on a 5-point Likert scale and screened for anxiety using the Generalized Anxiety Disorder-7 tool. Families of 25 patients were interviewed. Thematic analysis of the interviews revealed several themes, such as feeling stress and anxiety, feeling confident, anticipating home care, and needing support. These findings complemented the quantitative findings; the median comfort score was 4 (comfortable) (interquartile range 4-5) and 8 (interquartile range 4-12) for the Generalized Anxiety Disorder-7 on the day of discharge, with 16 reporting clinically significant anxiety. In the 28-day study period, 2 patients were readmitted and 6 had visited the emergency department. Despite feelings of anxiety, many families felt comfortable with DDH from the PICU. Increasing our understanding of the patient and family experiences of discharge from the PICU will help to better support these patients and their families during transition.

Parental Perception and Measured Functional Status Following Pediatric Critical Illness: A Secondary Analysis of the Survivor Outcomes Study.

We evaluated the concordance between parent/guardian perception of child long-term function and objectively scored long-term functional status using the Functional Status Scale (FSS) among PICU survivors. Secondary analysis of prospective cohort study. Urban, tertiary, academic PICU. PICU patients less than 18 years old were admitted between June and August 2012. None. We conducted telephone interviews of parents/guardians of PICU survivors ( n = 77) 6 months post-PICU discharge. We asked parents/guardians to characterize their child's functional status, and we determined FSS scores using scripted interview questions. Concordance between parent/guardian perceptions and FSS scores was assessed, revealing that parent/guardian perceptions of their child's functional status aligned poorly with FSS scores at 6 months (kappa coefficient 0.16). These findings shed light on a critical disconnect between parent/guardian perspective and our current tools to measure a child's functional status following critical illness. In an era of decreased PICU mortality and increased long-term morbidity, the discordance between parent/guardian perception and available scoring tools in the assessment of long-term functional status highlights a key opportunity to improve communication and anchor expectations for long-term outcomes among PICU survivors.

Long-term Pain Symptomatology in PICU Survivors Aged 8-18 Years.

Children discharged from the PICU often experience long-term physical, psychological, social and cognitive challenges, described as postintensive care syndrome. This study fills a critical gap by describing the long-term pain symptoms many children experience using child self-report. Participants in this cross-sectional study were children aged 8 to 18 years (and 1 parent, n = 64 dyads) who were 8 to 24 months post-PICU discharge. Participants completed measures assessing pain, psychosocial function, and treatment utilization. Health information relevant to the PICU admission was obtained from the electronic medical record. Children were an average age of 14.3 years and 50% female. Average pain intensity in the past month was 3.65 (0-10 numeric rating scale), with 36% of children reporting pain ≥2 to 3 days a week. Youth with higher intensity (≥4) and more frequent pain (≥2-3 days a week) had greater pain catastrophizing, pain-related fear, anxiety, and sleep disturbance than those with less frequent and intense pain. Higher pain frequency was also associated with greater pain-related disability and depressive symptoms. Pain was not associated with any PICU-related variables abstracted from the electronic medical record. Parents reported children frequently accessed pain treatment services postdischarge; however, 37.5% reported the coronavirus disease 2019 pandemic impacted access to recommended services. A significant portion of children experience pain post-PICU discharge. For many of these children, pain is frequent and is associated with impairments in psychosocial function. Future prospective research studies can be used to identify risk factors of poor pain outcomes so children can receive targeted interventions.

Implementation of nursing-led follow-up service for patients newly discharged from paediatric intensive care units: quality improvement initiative

BackgroundHuman resource shortages are a global challenge in the healthcare system and create barriers in providing timely follow-up visits for paediatric patients discharged recently from the intensive care unit (ICU)....

Effectiveness–implementation hybrid-2 randomised trial of a collaborative Shared Care Model for Detecting Neurodevelopmental Impairments after Critical Illness in Young Children (DAISY): pilot study protocol

IntroductionIn Australia, while paediatric intensive care unit (PICU) mortality has dropped to 2.2%, one in three survivors experience long-term neurodevelopmental impairment, limiting their life-course opportunities. Unlike other high-risk paediatric populations,...

Early Neuromuscular Blockade in Moderate-to-Severe Pediatric Acute Respiratory Distress Syndrome.

The use of neuromuscular blocking agents (NMBAs) in pediatric acute respiratory distress syndrome (PARDS) is common but unsupported by efficacy data. We sought to compare the outcomes between patients with moderate-to-severe PARDS receiving continuous NMBA during the first 48 hours of endotracheal intubation (early NMBA) and those without. Secondary analysis of data from the Randomized Evaluation of Sedation Titration for Respiratory Failure (RESTORE) clinical trial, a pediatric multicenter cluster randomized trial of sedation. Thirty-one PICUs in the United States. Children 2 weeks to 17 years receiving invasive mechanical ventilation (MV) for moderate-to-severe PARDS (i.e., oxygenation index ≥ 8 and bilateral infiltrates on chest radiograph on days 0-1 of endotracheal intubation). NMBA for the entire duration of days 1 and 2 after intubation. Among 1,182 RESTORE patients with moderate-to-severe PARDS, 196 (17%) received early NMBA for a median of 50.0% ventilator days (interquartile range, 33.3-60.7%). The propensity score model predicting the probability of receiving early NMBA included high-frequency oscillatory ventilation on days 0-2 (odds ratio [OR], 7.61; 95% CI, 4.75-12.21) and severe PARDS on days 0-1 (OR, 2.16; 95% CI, 1.50-3.12). After adjusting for risk category, early use of NMBA was associated with a longer duration of MV (hazard ratio, 0.57; 95% CI, 0.48-0.68; p < 0.0001), but not with mortality (OR, 1.62; 95% CI, 0.92-2.85; p = 0.096) compared with no early use of NMBA. Other outcomes including cognitive, functional, and physical impairment at 6 months post-PICU discharge were similar. Outcomes did not differ when comparing high versus low NMBA usage sites or when patients were stratified by baseline Pao2/Fio2 less than 150. Early NMBA use was associated with a longer duration of MV. This propensity score analysis underscores the need for a randomized controlled trial in pediatrics.

Editor’s Choice Articles for December

For December 2021 I draw your attention to three articles as my Editor’s Choices: long-term mental health disorder diagnoses after mechanical ventilation for severe respiratory disease (1); left heart decompression on veno-arterial extracorporeal membrane oxygenation (VA-ECMO) for dilated cardiomyopathy and myocarditis (2); and socioeconomic disadvantage and distance to pediatric critical care services in the United States (3). All three research reports have accompanying articles (4−7), and all items will be openly available for the next few months. WHAT IS THE RELATIONSHIP BETWEEN INVASIVE MECHANICAL VENTILATION FOR SEVERE RESPIRATORY DISEASE AND LONG-TERM “MENTAL DISORDER” DIAGNOSES? Geneslaw AS, Lu Y, Miles CH, et al: Long-Term Increase in Mental Disorder Diagnoses After Invasive Mechanical Ventilation for Severe Childhood Respiratory Disease: A Propensity Matched Observational Cohort Study (1). A propensity matching study to learn so much from: the dataset, Texas Medicaid (1999 to 2012); the outcome measure, long-term mental disorder diagnoses; and the comparisons, 1,351 invasively ventilated children matched to 6,755 general inpatients and 7,780 children in the PICU matched to 38,900 general inpatients. For the answer, please read the authors’ transparent analysis of this complex material and their important observations. We all need to understand these data, research this field, and not allow any distortion of fact. Here, we are first helped by an insightful editorial on causal inference from observational data (4). Second, we have an accompanying article in the “PCCM Notes, Methods, and Statistics” section about learning from an association analysis using propensity scores (5). For many reasons, all three of these items are a benchmark for such work in PCCM. WHAT ABOUT LEFT HEART DECOMPRESSION ON VA-ECMO? Choudhury TA, Ofori-Amanfo G, Choi J, et al: Left Heart Decompression on Veno-Arterial Extracorporeal Membrane Oxygenation in Children With Dilated Cardiomyopathy and Myocarditis: An Extracorporeal Life Support Organization Registry Review (2). This database study used the Extracorporeal Life Support Organization (ELSO) registry (2000 to 2016) to review two cohorts of patients supported with VA-ECMO: 532 with myocarditis and 906 with dilated cardiomyopathy. In all, 274 patients had left heart decompression and the authors present an analysis of associated outcomes. There is no editorial with this article. Instead, I am pleased to announce that the accompanying material is the first item in a new section called “PCCM Concise Clinical Physiology Review”. The purpose of this material is to provide an update on some aspect of clinical physiology that applies to pediatric critical illness. This month, Puri and Adachi not only discuss the new ELSO report in the context of other studies, but also treat us to an update of left heart physiology and simulated left ventricle pressure-volume loops on VA-ECMO and cardiopulmonary bypass (6). WHAT IS THE RELATIONSHIP BETWEEN POVERTY AND DISTANCE TO PEDIATRIC CRITICAL CARE SERVICES ACROSS THE UNITED STATES? Brown LE, Franca UL, McManus ML: Socioeconomic Disadvantage and Distance to Pediatric Critical Care (3). My third highlighted article is an epidemiological study using the 2016 American Community Survey that examines access to 319 PICUs within 170 metropolitan statistical areas across the continental United States. Our editorialists provide helpful discussion of the findings and challenge us with their discourse as they argue that unequal access to pediatric critical care services constitutes injustice (7). “PCCM CONNECTIONS” FOR READERS Perhaps you will consider December 2021 as the time to review what is new on the topic of overall health outcomes following pediatric critical illness, which is certainly pertinent given the discussion above about mechanical ventilation and long-term mental disorder diagnoses (1,4,5). Regular readers of PCCM will be able to cross reference to another article in the December 2021 issue, a scoping review of post-PICU discharge methods and instruments used to measure overall health (8). Also consider our other research articles looking at early- to long-term functional outcome and/or quality-of-life of PICU patients reported in the January (9,10), May (11), and October (12) issues of PCCM. Please use all eight articles as a means of quick topic review on how and what others have used in assessing PICU patient outcomes.

Overall Health Following Pediatric Critical Illness: A Scoping Review of Instruments and Methodology.

Families identify overall health as a key outcome after pediatric critical illness. We conducted a planned secondary analysis of a scoping review to determine the methods, populations, and instruments used to evaluate overall health outcomes for both children and their families after critical illness. Planned Secondary Analysis of a Scoping Review. We searched PubMed, EMBASE, PsycINFO, Cumulative Index of Nursing and Allied Health Literature, and the Cochrane Controlled Trials Registry databases from 1970 to 2017 to identify studies which measured postdischarge overall health of children who survived critical illness and their families. Articles reporting overall health outcomes after pediatric critical illness. None. Among the 407 articles which measured outcomes following pediatric critical illness, 161 (40%) measured overall health. The overall health domain was most commonly measured in traumatic brain injury (44%) and the general PICU populations (16%). In total, there were 39 unique measures used to evaluate overall health. Across all subjects, seven measures accounted for 89% of instruments, with the Glasgow Outcome Scale (47%) and the Pediatric Overall Performance Category (17%) being most commonly used. Excluding studies targeting survivors of traumatic brain injury, Pediatric Overall Performance Category, Glasgow Outcome Scale, and the General Health Questionnaire were the most commonly used instruments. Patients were followed for a median 10.5 months (interquartile range, 4.5-21 mo). Overall health was commonly assessed post-PICU discharge, especially in the traumatic brain injury population, using a heterogenous array of measures. Evaluation and consensus are imperative to identify the most appropriate method to measure overall health with the goal of improving care efficacy and facilitating recovery across populations of critically ill children.

Protocol for a multicentre longitudinal mixed-methods study: feeding and survivorship outcomes in previously healthy young paediatric Intensive care survivors (the PIES Study)

IntroductionAn admission to paediatric intensive care unit (PICU) is associated with multiple physical and environmental stressors, often involving many negative and painful oral experiences. Evidence from children with complex medical...

Caregiver dissatisfaction with their child\u2019s participation in home activities after pediatric critical illness

BackgroundPediatric critical care is often accompanied by a variety of functional impairments. Preliminary evidence suggests children’s participation in home activities has a slow trajectory post-pediatric intensive care unit (PICU) discharge, however, additional and more granular knowledge on specific problematic activities is needed to inform patient-centric rehabilitative care. The objectives of this study are to identify common home activities in which caregivers’ report dissatisfaction and to determine predictors of caregivers’ dissatisfaction with their child’s participation in home activities post-PICU discharge.MethodsSecondary analyses of data from a prospective cohort study, the Wee-Cover study, using a subsample of caregivers (N = 170) of children 1–17 years, admitted to a PICU ≥48 h with data on our primary outcome measure from at least one time point. Data were gathered at enrollment and at 3 and 6 months post-PICU discharge. Caregivers reported on their dissatisfaction with their child’s participation in home activities via the Participation and Environment Measure. Common activities were identified by plotting caregiver dissatisfaction for each activity pre-and post-PICU, reporting activities in which ≥50% of caregivers reported dissatisfaction with post-PICU, and assessing for significantly different dissatisfaction levels between time-points for each activity. Predictors of caregiver dissatisfaction were assessed using Poisson generalized estimated equation models.ResultsThere was variability in reported dissatisfaction across all activities; ≥50% of caregivers reported dissatisfaction with five activities, including getting clean, personal care management, and mealtime for younger children and household chores and homework for school-aged children and youth. Four activities had significantly higher caregiver dissatisfaction post-PICU: sleep (children < 5 years), homework, indoor play and games, and computer/video games (children ≥5 years). Home environmental support and the interaction of having participation-focused strategies with receiving PICU-based rehabilitation services were negatively associated with caregiver dissatisfaction. Increased caregiver stress and functional performance were associated with increased dissatisfaction.ConclusionsIndividualized PICU-based rehabilitation services to determine family priorities and develop participation-focused strategies, specifically those increasing environmental supports within the home, may ease the family’s transition home post-PICU.Trial registrationClinicalTrials.gov Identifier NCT02148081 05/28/2014.

Evidence-Based Review and Discussion Points

Evidence-Based Review and Discussion Points

A Randomized Comparative Trial to Evaluate a PICU Navigator-Based Parent Support Intervention.

Communication breakdowns in PICUs contribute to inadequate parent support and poor post-PICU parent outcomes. No interventions supporting communication have demonstrated improvements in parental satisfaction or psychologic morbidity. We compared parent-reported outcomes from parents receiving a navigator-based parent support intervention (PICU Supports) with those from parents receiving an informational brochure. Patient-level, randomized trial. Two university-based, tertiary-care children's hospital PICUs. Parents of patients requiring more than 24 hours in the PICU. PICU Supports included adding a trained navigator to the patient's healthcare team. Trained navigators met with parents and team members to assess and address communication, decision-making, emotional, informational, and discharge or end-of-life care needs; offered weekly family meetings; and did a post-PICU discharge parent check-in. The comparator arm received an informational brochure providing information about PICU procedures, terms, and healthcare providers. The primary outcome was percentage of "excellent" responses to the Pediatric Family Satisfaction in the ICU 24 decision-making domain obtained 3-5 weeks following PICU discharge. Secondary outcomes included parental psychologic and physical morbidity and perceptions of team communication. We enrolled 382 families: 190 received PICU Supports, and 192 received the brochure. Fifty-seven percent (216/382) completed the 3-5 weeks post-PICU discharge survey. The mean percentage of excellent responses to the Pediatric Family Satisfaction in the ICU 24 decision-making items was 60.4% for PICU Supports versus 56.1% for the brochure (estimate, 3.57; SE, 4.53; 95% CI, -5.77 to 12.90; p = 0.44). Differences in secondary outcomes were not statistically significant. Most parents (91.1%; 113/124) described PICU Supports as "extremely" or "somewhat" helpful. Parents who received PICU Supports rated the intervention positively. Differences in decision-making satisfaction scores between those receiving PICU Supports and a brochure were not statistically significant. Interventions like PICU Supports should be evaluated in larger studies employing enhanced recruitment and retention of subjects.

Study protocol for a multicentre longitudinal mixed methods study to explore the Outcomes of ChildrEn and fAmilies in the first year after paediatric Intensive Care: the OCEANIC study

IntroductionAnnually in the UK, 20 000 children become very ill or injured and need specialist care within a paediatric intensive care unit (PICU). Most children survive. However, some children and...