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

INTRODUCTION: As 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 physical, cognitive, emotional and social sequelae common to PICU survivors is limited, however, and the trajectory of recovery and risk factors for morbidity remain unknown. METHODS AND ANALYSIS: The Post-Intensive Care Syndrome - paediatrics Longitudinal Cohort Study will evaluate child and family outcomes over 2 years following PICU discharge and identify child and clinical factors associated with impaired outcomes. We will enrol 750 children from 30 US PICUs during their first PICU hospitalisation, including 500 case participants experiencing ≥3 days of intensive care that include critical care therapies (eg, mechanical ventilation, vasoactive infusions) and 250 age-matched, sex-matched and medical complexity-matched control participants experiencing a single night in the PICU with no intensive care therapies. Children, parents and siblings will complete surveys about health-related quality of life, physical function, cognitive status, emotional health and peer and family relationships at multiple time points from baseline recall through 2 years post-PICU discharge. We will compare outcomes and recovery trajectories of case participants to control participants, identify risk factors associated with poor outcomes and determine the emotional and social health consequences of paediatric critical illness on parents and siblings. ETHICS AND DISSEMINATION: This study has received ethical approval from the University of Pennsylvania Institutional Review Board (protocol #843844). Our overall objective is to characterise the ongoing impact of paediatric critical illness to guide development of interventions that optimise outcomes among children surviving critical illness and their families. Findings will be presented at key disciplinary meetings and in peer-reviewed publications at fixed data points. Published manuscripts will be added to our public study website to ensure findings are available to families, clinicians and researchers. TRIALS REGISTRATION NUMBER: NCT04967365.

Post-traumatic stress trajectories of children and their parents over the year following intensive care discharge: A secondary analysis.

BACKGROUND: New research in the field of psychological trauma has emphasized (a) the heterogeneity of psychological reactions after traumatic events and (b) the existence of distinct symptom trajectories. AIMS: In this study, existing data on post-traumatic stress disorder (PTSD) symptoms in 66 parent-child dyads were re-examined in the light of this literature in order to establish whether a similar pattern of symptom trajectories also applies to this population. STUDY DESIGN: A prospective observational cohort study. Participants' PTSD symptoms were assessed 3 and 12 months after discharge from a paediatric intensive care unit (PICU), using a short form of the Davidson Trauma Scale with parents and the Child Revised Impact of Events Scale with children aged 7-17 years. RESULTS: Results confirmed that the majority of children (58%) and parents (46%) exhibited a 'Resilient' PTSD trajectory over the year, in the sense that their scores remained in the non-clinical range at both timepoints. Children displaying a 'Resilient' trajectory were more likely to have a parent who also displayed a 'Resilient' trajectory (p = .018). However, there was also evidence of a 'Recovery' trajectory in a significant minority in this sample and over 1 in 4 children and parents exhibited a 'Chronic' or 'Delayed' symptom trajectory. CONCLUSIONS: Although average PTSD scores reduced over time in this sample and 'Resilient' trajectories were common, a significant proportion of children and parents exhibited 'Chronic' and 'Delayed' symptom trajectories. RELEVANCE TO CLINICAL PRACTICE: These results suggest that, although the majority do well, a significant number of children and family members may develop chronic or delayed symptoms of PTSD in the year following PICU discharge. The monitoring of individual family members' symptoms beyond 3 months post-discharge may help to determine those who might most benefit from further support.

Mental Health Provision in PICU: An Analysis of Referrals to an Embedded Psychologist Over 20 Years at a Single Center.

OBJECTIVES: The main aim of this study was to illustrate the type of mental health provision possible on PICU by describing the nature of referrals of child patients and their parents to an embedded psychologist over a 20-year period, adding to the literature on intervention and service development. DESIGN: Retrospective evaluation of anonymized departmental database. SETTING: Twelve-bed PICU at a teaching hospital in a major urban center. PATIENTS: Five hundred forty-five consecutive referrals for support for parent and/or child by PICU staff between 1998 and 2017. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Referrals increased from seven of 288 (2.4%) in 1998 to 85 of 643 (13.2%) in 2017. The majority were for parent support initially (456/545, 84%). Mean ( sd ) number of contacts was 4.5 (10.2), range 1 to 143, and mode was 1. Patient gender and age typical of the total PICU population, but referrals were more common where children had an oncology or trauma diagnosis ( p < 0.001). Comparisons with other inpatient referrals at the same hospital revealed a higher proportion of requests were made for parent support on PICU (456/545 [84%] vs 789/1,997 [40%]; p < 0.001) and that nurses were more likely to initiate referrals on PICU than on the other wards (437/543 [80%] vs 1,190/1,993 [60%]; p < 0.001). In other respects, the two groups were similar in terms of number of sessions, waiting times, and attendance rates. CONCLUSIONS: Growing appreciation of the psychological impact of a child's admission to PICU has been associated with increasing referral to an embedded psychologist over a 20-year period, at this center. Clinical and service implications are outlined in the context of the latest research on the mitigation of post-intensive care syndrome in this population.

Early mobilisation and rehabilitation in the PICU: a UK survey.

OBJECTIVE: To understand the context and professional perspectives of delivering early rehabilitation and mobilisation (ERM) within UK paediatric intensive care units (PICUs). DESIGN: A web-based survey administered from May 2019 to August 2019. SETTING: UK PICUs. PARTICIPANTS: A total of 124 staff from 26 PICUs participated, including 22 (18%) doctors, 34 (27%) nurses, 28 (23%) physiotherapists, 19 (15%) occupational therapists and 21 (17%) were other professionals. RESULTS: Key components of participants' definitions of ERM included tailored, multidisciplinary rehabilitation packages focused on promoting recovery. Multidisciplinary involvement in initiating ERM was commonly reported. Over half of respondents favoured delivering ERM after achieving physiological stability (n=69, 56%). All age groups were considered for ERM by relevant health professionals. However, responses differed concerning the timing of initiation. Interventions considered for ERM were more likely to be delivered to patients when PICU length of stay exceeded 28 days and among patients with acquired brain injury or severe developmental delay. The most commonly identified barriers were physiological instability (81%), limited staffing (79%), sedation requirement (73%), insufficient resources and equipment (69%), lack of recognition of patient readiness (67%), patient suitability (63%), inadequate training (61%) and inadequate funding (60%). Respondents ranked reduction in PICU length of stay (74%) and improvement in psychological outcomes (73%) as the most important benefits of ERM. CONCLUSION: ERM is gaining familiarity and endorsement in UK PICUs, but significant barriers to implementation due to limited resources and variation in content and delivery of ERM persist. A standardised protocol that sets out defined ERM interventions, along with implementation support to tackle modifiable barriers, is required to ensure the delivery of high-quality ERM.

Screening for Factors Influencing Parental Psychological Vulnerability During a Child's PICU Admission.

OBJECTIVES: To identify the risks of developing post-traumatic stress disorder (PTSD) and/or depression in parents following their child's PICU admission using a brief screening instrument and to examine the associations with these risks. DESIGN: A cross-sectional parental survey. SETTING: A general 13-bed PICU at a large teaching hospital. SUBJECTS: One hundred and seven parents of 75 children admitted to the PICU. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: All parents completed the 10-item Posttraumatic Adjustment Screen (PAS) before discharge. The PAS assesses risk factors known to be associated with poorer psychological outcome, including psychosocial variables pretrauma and peritrauma, and acute stress. Parents' scores on the PAS indicated that 64 (60%) were at risk of developing PTSD and 80 (75%) were at risk of developing depression following their child's admission. Univariate analyses suggested that psychosocial variables, such as preexisting stressors and a history of previous mental health problems, were more strongly associated with PAS risk scores for PTSD and depression than medical or sociodemographic factors. In logistic regression analyses, a history of previous mental health problems was significantly associated with risk of developing PTSD and depression (p < 0.001) explaining 28% and 43% of the variance in these outcomes. CONCLUSIONS: This study suggests that a significant number of parents on PICU are potentially at risk of developing PTSD and/or depression postdischarge and that psychosocial factors, pretrauma and peritrauma, are stronger determinants of this risk, and of acute distress, than other variables. Identification of vulnerable parents during admission, using a measure such as the PAS, could facilitate the targeting of support and monitoring, acutely and postdischarge, at those who might be most likely to benefit.

Post-Traumatic Growth in Parents following Their Child's Death in a Pediatric Intensive Care Unit.

Background: Although bereaved parents suffer greatly, some may experience positive change referred to as post-traumatic growth. Objective: Explore the extent to which parents perceive post-traumatic growth after their child's death in a pediatric intensive care unit (PICU), and associated factors. Design: Longitudinal parent survey conducted 6 and 13 months after a child's death. Surveys included the Post-traumatic Growth Inventory-Short Form (PTGI-SF), a 10-item measure with range of 0-50 where higher scores indicate more post-traumatic growth. Surveys also included the Inventory of Complicated Grief (ICG), the Patient Health Questionnaire-8 (PHQ-8) for depression, the Short Post-Traumatic Stress Disorder Rating Interview (SPRINT), a single item on perceived overall health, and sociodemographics. Setting/Subjects: One hundred fifty-seven parents of 104 children who died in 1 of 8 PICUs affiliated with the U.S. Collaborative Pediatric Critical Care Research Network. Results: Of participating parents, 62.4% were female, 71.6% White, 82.7% married, and 89.2% had at least a high school education. Mean PTGI-SF scores were 27.5 ± 12.52 (range 5-50) at 6 months and 28.6 ± 11.52 (range 2-49) at 13 months (p = 0.181). On multivariate modeling, higher education (compared with those not completing high school) and higher 6-month ICG scores (reflecting more complicated grief symptoms) were associated with lower 13-month PTGI-SF scores (p = 0.005 and 0.033, respectively). Conclusion: Parents bereaved by their child's PICU death perceive a moderate degree of post-traumatic growth in the first 13 months after the death however variability is wide. Education level and complicated grief symptoms may influence parents' perception of post-traumatic growth.

Families' Experiences of Life in the Year after a Child's Critical Illness: Navigating the Road to a "New Normal".

Semistructured interviews were conducted with patients and family members ( n = 18) postdischarge to examine how they managed their recovery in the year following a child's intensive care unit admission. Data were analyzed using the grounded theory. Participants described an ongoing need to develop and adapt their narratives about admission and recovery. Other key themes were as follows: just getting through, recognizing they had changed, striving for normality, and finding positive aspects related to their experiences. It took longer than they expected for families to build a coherent narrative of events postdischarge and to adjust to the "new normal." Implications for health professionals are discussed.

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.

INTRODUCTION: Annually 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 their families may experience problems after they have left the PICU including physical, functional and/or emotional problems. It is unknown which children and families experience such problems, when these occur or what causes them. The aim of this mixed-method longitudinal cohort study is to understand the physical, functional, emotional and social impact of children surviving PICU (aged: 1 month-17 years), their parents and siblings, during the first year after a PICU admission. METHODS AND ANALYSIS: A quantitative study involving 300 child survivors of PICU; 300 parents; and 150-300 siblings will collect data (using self-completion questionnaires) at baseline, PICU discharge, 1, 3, 6 and 12 months post-PICU discharge. Questionnaires will comprise validated and reliable instruments. Demographic data, PICU admission and treatment data, health-related quality of life, functional status, strengths and difficulties behaviour and post-traumatic stress symptoms will be collected from the child. Parent and sibling data will be collected on the impact of paediatric health conditions on the family's functioning capabilities, levels of anxiety and social impact of the child's PICU admission. Data will be analysed using descriptive and inferential statistics. Concurrently, an embedded qualitative study involving semistructured interviews with 24 enrolled families at 3 months and 9 months post-PICU discharge will be undertaken. Framework analysis will be used to analyse the qualitative data. ETHICS AND DISSEMINATION: The study has received ethical approval from the National Health Services Research Ethics Committee (Ref: 19/WM/0290) and full governance clearance. This will be the first UK study to comprehensively investigate physical, functional, emotional and social consequences of PICU survival in the first-year postdischarge.Clinical Trials Registration Number: ISRCTN28072812 [Pre-results].