Pediatric Chronic Critical Illness: A Protocol for a Scoping Review

Due to improvements in the delivery of intensive care, survival of even the most critically ill of children has increased, leading to a growing proportion of children with chronic and/or complex medical conditions in the pediatric intensive care unit (PICU). Some of these children are at significant risk of recurrent critical illness and persistent long-term morbidity, and become ‘superusers’ of PICU resources. These children are increasingly recognized as a unique high-risk population in the PICU referred to as children with chronic critical illness (CCI). To date, this population has been understudied, in part due to pediatric CCI being a novel concept without an accepted definition to consistently identify these children. This scoping review is the first step in the development of a consensus case definition for pediatric CCI. This comprehensive literature review will seek to first evaluate existing or suggested definitions of pediatric CCI, and in their absence, identify key terms and constructs to inform the development of a working definition of pediatric CCI for future research.

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Pediatric Chronic Critical Illness: Protocol for a Scoping Review

JMIR Research Protocols ◽

10.2196/30582 ◽

2021 ◽

Vol 10 (10) ◽

pp. e30582

Author(s):

David Zorko ◽

James Dayre McNally ◽

Bram Rochwerg ◽

Neethi Pinto ◽

Rachel Couban ◽

...

Keyword(s):

Intensive Care ◽

Critical Illness ◽

Scoping Review ◽

Clinical Characteristics ◽

Case Definition ◽

Critically Ill Children ◽

Data Abstraction ◽

Chronic Critical Illness ◽

Scoping Reviews ◽

Citation Screening

Background Improvements in the delivery of intensive care have increased survival among even the most critically ill children, thereby leading to a growing number of children with chronic complex medical conditions in the pediatric intensive care unit (PICU). Some of these children are at a significant risk of recurrent and prolonged critical illness, with higher morbidity and mortality, making them a unique population described as having chronic critical illness (CCI). To date, pediatric CCI has been understudied and lacks an accepted consensus case definition. Objective This study aims to describe the protocol and methodology used to perform a scoping review that will describe how pediatric CCI has been defined in the literature, including the concept of prolonged PICU admission and the methodologies used to develop any existing definitions. It also aims to describe patient characteristics and outcomes evaluated in the included studies. Methods We will search four electronic databases for studies that evaluated children admitted to any PICU identified with CCI. We will also search for studies describing prolonged PICU admission, as this concept is related to pediatric CCI. Furthermore, we will develop a hybrid crowdsourcing and machine learning (ML) methodology to complete citation screening. Screening and data abstraction will be performed by 2 reviewers independently and in duplicate. Data abstraction will include the details of population definitions, demographic and clinical characteristics of children with CCI, and evaluated outcomes. Results The database search, crowd reviewer recruitment, and ML algorithm development began in March 2021. Citation screening and data abstraction were completed in April 2021. Final data verification is ongoing, with analysis and results anticipated to be completed by fall 2021. Conclusions This scoping review will describe the existing or suggested definitions of pediatric CCI and important demographic and clinical characteristics of patients to whom these definitions have been applied. This review’s results will help inform the development of a consensus case definition for pediatric CCI and set a priority agenda for future research. We will use and demonstrate the validity of crowdsourcing and ML methodologies for improving the efficiency of large scoping reviews. International Registered Report Identifier (IRRID) DERR1-10.2196/30582

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Pediatric Chronic Critical Illness: Protocol for a Scoping Review (Preprint)

10.2196/preprints.30582 ◽

2021 ◽

Author(s):

David Zorko ◽

James Dayre McNally ◽

Bram Rochwerg ◽

Neethi Pinto ◽

Rachel Couban ◽

...

Keyword(s):

Intensive Care ◽

Critical Illness ◽

Scoping Review ◽

Clinical Characteristics ◽

Case Definition ◽

Critically Ill Children ◽

Data Abstraction ◽

Chronic Critical Illness ◽

Scoping Reviews ◽

Citation Screening

BACKGROUND Improvements in the delivery of intensive care have increased survival among even the most critically ill children, thereby leading to a growing number of children with chronic complex medical conditions in the pediatric intensive care unit (PICU). Some of these children are at a significant risk of recurrent and prolonged critical illness, with higher morbidity and mortality, making them a unique population described as having chronic critical illness (CCI). To date, pediatric CCI has been understudied and lacks an accepted consensus case definition. OBJECTIVE This study aims to describe the protocol and methodology used to perform a scoping review that will describe how pediatric CCI has been defined in the literature, including the concept of prolonged PICU admission and the methodologies used to develop any existing definitions. It also aims to describe patient characteristics and outcomes evaluated in the included studies. METHODS We will search four electronic databases for studies that evaluated children admitted to any PICU identified with CCI. We will also search for studies describing prolonged PICU admission, as this concept is related to pediatric CCI. Furthermore, we will develop a hybrid crowdsourcing and machine learning (ML) methodology to complete citation screening. Screening and data abstraction will be performed by 2 reviewers independently and in duplicate. Data abstraction will include the details of population definitions, demographic and clinical characteristics of children with CCI, and evaluated outcomes. RESULTS The database search, crowd reviewer recruitment, and ML algorithm development began in March 2021. Citation screening and data abstraction were completed in April 2021. Final data verification is ongoing, with analysis and results anticipated to be completed by fall 2021. CONCLUSIONS This scoping review will describe the existing or suggested definitions of pediatric CCI and important demographic and clinical characteristics of patients to whom these definitions have been applied. This review’s results will help inform the development of a consensus case definition for pediatric CCI and set a priority agenda for future research. We will use and demonstrate the validity of crowdsourcing and ML methodologies for improving the efficiency of large scoping reviews. CLINICALTRIAL INTERNATIONAL REGISTERED REPORT DERR1-10.2196/30582

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Pediatric Chronic Critical Illness, Prolonged ICU Admissions, and Clinician Distress

Journal of Pediatric Intensive Care ◽

10.1055/s-0041-1724098 ◽

2021 ◽

Author(s):

Alison H. Miles ◽

Cynda H. Rushton ◽

Brian M. Wise ◽

Aka Moore ◽

Renee D. Boss

Keyword(s):

Intensive Care Unit ◽

Content Analysis ◽

Intensive Care ◽

Critical Illness ◽

Pediatric Intensive Care Unit ◽

Pediatric Intensive Care ◽

Goals Of Care ◽

Chronic Critical Illness ◽

Conventional Content Analysis ◽

Clinical Interactions

AbstractTo gain an in-depth understanding of the experience of pediatric intensive care unit (PICU) clinicians caring for children with chronic critical illness (CCI), we conducted, audiotaped, and transcribed in-person interviews with PICU clinicians. We used purposive sampling to identify five PICU patients who died following long admissions, whose care generated substantial staff distress. We recruited four to six interdisciplinary clinicians per patient who had frequent clinical interactions with the patient/family for interviews. Conventional content analysis was applied to the transcripts resulting in the emergence of five themes: nonbeneficial treatment; who is driving care? Elusive goals of care, compromised personhood, and suffering. Interventions directed at increasing consensus, clarifying goals of care, developing systems allowing children with CCI to be cared for outside of the ICU, and improving communication may help to ameliorate this distress.

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The Characteristics of Post-Intensive Care Syndrome to Inform Occupational Therapy Practice During the Post-Intensive Care Period: A Systematic Scoping Review.

10.21203/rs.3.rs-1150667/v1 ◽

2021 ◽

Author(s):

Zoe Heiniger ◽

Susan Brandis

Keyword(s):

Intensive Care ◽

Critical Illness ◽

Scoping Review ◽

Occupational Therapists ◽

Future Research ◽

First Year ◽

Intensive Care Treatment ◽

Eligibility Criteria ◽

Post Intensive Care Syndrome ◽

Care Period

Abstract Background: As the demand for intensive care treatment increases, so too does the number of people surviving critical illness. Since 2010, the term “post-intensive care syndrome” has been used to describe the constellation of new or worsening physical, cognitive, and psychological impairments that persist after intensive care discharge. This review aimed determine the characteristics of PICS present during the first year following discharge from the ICU to inform occupational therapists working with this population during the post-intensive care period. Methods: A systematic scoping review has been conducted according to the PRISMA-ScR Checklist. Seven key databases were searched from inception to 2020. A single reviewer screened available literature against eligibility criteria then cross-checked by a second reviewer. Data were abstracted from relevant publications and results were narratively synthesised through application of a biopsychosocial model.Results: Twenty-five studies were identified for inclusion. Characteristics were categorised as biological, psychological, or social and contextual. Overarching outcomes were also considered. Results demonstrated that characteristics were complex and interwoven between domains. Results were grouped into four key themes: 1) An increased worldwide demand for intensive care, 2) ADL performance, 3) HRQOL, and 4) Consideration of social and contextual characteristics. No studies were found to detail the role of occupational therapists working with post-intensive care survivors.Conclusions: The complex and interwoven nature of post-intensive care syndrome highlights the need to consider a holistic rehabilitation approach. Considering the COVID-19 pandemic, occupational therapists have the potential to play an increased role during the post-intensive care period to reduce the global healthcare burden and improve patient outcomes. Future research is needed to determine the best model of care to support occupational therapists working with survivors of critical illness.Trial Registration: NA

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P0469 / #762: CHRONIC CRITICAL ILLNESS IN PEDIATRIC INTENSIVE CARE IN SWITZERLAND (OCTOPUS): CHILDREN’ CARE CHARACTERISTICS AND NURSING WORKLOAD

Pediatric Critical Care Medicine ◽

10.1097/01.pcc.0000740212.65397.7f ◽

2021 ◽

Vol 22 (Supplement 1 3S) ◽

pp. 238-238

Author(s):

C. Grandjean ◽

M.-H. Perez ◽

M.-C. Fazan ◽

L. Rio ◽

A.-L. Lauria ◽

...

Keyword(s):

Intensive Care ◽

Critical Illness ◽

Pediatric Intensive Care ◽

Nursing Workload ◽

Chronic Critical Illness

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A Snapshot of Chronic Critical Illness in Pediatric Intensive Care Units

Journal of Pediatric Intensive Care ◽

10.1055/s-0041-1736334 ◽

2021 ◽

Author(s):

Miriam C. Shapiro ◽

Renee D. Boss ◽

Pamela K. Donohue ◽

Elliott M. Weiss ◽

Vanessa Madrigal ◽

...

Keyword(s):

Intensive Care ◽

Critical Illness ◽

Intensive Care Units ◽

Medical Technology ◽

Pediatric Intensive Care ◽

The United States ◽

Pediatric Intensive Care Units ◽

Prolonged Stay ◽

Chronic Critical Illness ◽

Medical Complexity

AbstractChildren with chronic critical illness (CCI) represent the sickest subgroup of children with medical complexity. In this article, we applied a proposed definition of pediatric CCI to assess point prevalence in medical, cardiovascular, and combined pediatric intensive care units (PICUs), screening all patients admitted to six academic medical centers in the United States on May 17, 2017, for pediatric CCI (PCCI) eligibility. We gathered descriptive data to understand medical complexity and resource needs of children with PCCI in PICUs including data regarding hospitalization characteristics, previous admissions, medical technology, and chronic multiorgan dysfunction. Descriptive statistics were used to characterize the study population and hospital data. The study cohort was divided between PICU-prolonged (stay > 14 days) and PICU-exposed (any time in PICU); comparative analyses were conducted. On the study day, 185 children met inclusion criteria, 66 (36%) PICU-prolonged and 119 (64%) PICU-exposed. Nearly all had home medical technology and most (n = 152; 82%) required mechanical ventilation in the PICU. The PICU-exposed cohort mirrored the PICU-prolonged with a few exceptions as follows: they were older, had fewer procedures and surgeries, and had more recurrent hospitalizations. Most (n = 44; 66%) of the PICU-prolonged cohort had never been discharged home. Children with PCCI were a sizable proportion of the unit census on the study day. We found that children with PCCI are a prevalent population in PICUs. Dividing the cohorts between PICU-prolonged and PICU-exposed helps to better understand the care needs of the PCCI population. Identifying and studying PCCI, including variables relevant to PICU-prolonged and PICU-exposed, could inform changes to PICU care models and training programs to better enable PICUs to meet their unique needs.

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P0500 / #2092: CHRONIC CRITICAL ILLNESS IN PEDIATRIC INTENSIVE CARE (OCTOPUS STUDY): PICU RESOURCE USE AND NURSING WORKLOAD

Pediatric Critical Care Medicine ◽

10.1097/01.pcc.0000740336.63027.f7 ◽

2021 ◽

Vol 22 (Supplement 1 3S) ◽

pp. 252-252

Author(s):

C. Grandjean ◽

M.-H. Perez ◽

M.-C. Fazan ◽

L. Rio ◽

D. Trachsel ◽

...

Keyword(s):

Intensive Care ◽

Critical Illness ◽

Resource Use ◽

Pediatric Intensive Care ◽

Nursing Workload ◽

Chronic Critical Illness

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Characteristics of a child's critical illness and parents' reactions: preliminary report of a pilot study

American Journal of Critical Care ◽

10.4037/ajcc1992.1.3.80 ◽

1992 ◽

Vol 1 (3) ◽

pp. 80-84 ◽

Cited By ~ 21

Author(s):

JM Youngblut ◽

SY Shiao

Keyword(s):

Intensive Care Unit ◽

Intensive Care ◽

Critical Illness ◽

Pediatric Intensive Care Unit ◽

Severity Of Illness ◽

Pediatric Intensive Care ◽

Small Sample ◽

Future Research ◽

Convenience Sample ◽

Risk Of Mortality

OBJECTIVE: To explore the relationships between parents' reactions to the pediatric intensive care unit admission of a child and characteristics of the child's illness. METHOD: A convenience sample, consisting of 16 mothers and 13 fathers of 16 children aged 5 years and younger, was used. The Pediatric Risk of Mortality scale was used to measure severity of illness. Parental reactions were measured at about 24 hours after the child's admission with the Parental Stressor Scale: PICU and the Parental Concerns Scale. RESULTS: Mothers' concerns and stressors were not related to the child's Pediatric Risk of Mortality score. However, fathers reported greater concern about the child's experience and about parenting as the child's Pediatric Risk of Mortality score increased. CONCLUSIONS: Parents' reactions to their child's critical illness and admission to the pediatric intensive care unit were not related to characteristics of the child's condition in this small sample. Future research needs are suggested.

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Attending to Methodological Challenges in Qualitative Research to Foster Participation of Individuals with Chronic Critical Illness and Communication Impairments

Global Qualitative Nursing Research ◽

10.1177/23333936211000044 ◽

2021 ◽

Vol 8 ◽

pp. 233339362110000

Author(s):

Fuchsia Howard ◽

Sarah Crowe ◽

Scott Beck ◽

Gregory Haljan

Keyword(s):

Qualitative Research ◽

Critical Illness ◽

Therapeutic Relationship ◽

Prolonged Mechanical Ventilation ◽

Future Research ◽

Interpretive Description ◽

Study Participation ◽

Chronic Critical Illness ◽

Conducting Research ◽

Communication Impairments

Individuals with chronic critical illness experience multiple complex physiological disturbances including ongoing respiratory failure, requiring prolonged mechanical ventilation, and thus communication impairments. In conducting a qualitative interpretive description study, we sought to ensure that individuals with chronic critical illness themselves were included as participants. Our commitment to recruiting these individuals to the study and ensuring their data meaningfully informed the analysis and findings required us to reconsider and challenge some of the traditional notions of high-quality qualitative research and develop appropriate practical strategies. These strategies included: (1) centering participant abilities and preferences, (2) adopting a flexible approach to conducting interviews, (3) engaging in a therapeutic relationship, and (4) valuing “thin” data. In this article, we extend existing literature describing the complexities of conducting research with individuals with communication impairments and strategies to consider in the hopes of informing future research with other populations historically excluded from study participation.

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