Factors Associated With Health-Related Quality of Life Changes in Survivors to Pediatric Intensive Care

Cunha, Francisco; Mota, Teresa; Teixeira‐Pinto, Armando; Carvalho, Leonor; Estrada, João; Marques, Antônio Dean Barbosa; Costa‐Pereira, Altamiro; Almeida-Santos, Luís

doi:10.1097/pcc.0b013e31826012b4

Cited by 22 publications

(18 citation statements)

References 21 publications

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“…HRQOL. HRQOL tools were used to measure various aspects of physical and psychosocial functional outcomes and behavior in pediatric critical care survivors (38,(51)(52)(53)(54)(55)(56)(57). Although HRQOL and functional ability are not identical, they have overlapping constructs and are thus often used interchangeably (61).…”

Section: Types Of Measuresmentioning

confidence: 99%

“…Multidimensional HRQOL tools used in the PICU population include the Health Utilities Indexes (HUI) 1, 2 and 3, the Pediatric Quality of Life Inventory version 4.0 (PedsQL), the Stein-Jessup Functional Status II (Revised), and the Child Health Questionnaire (CHQ) (38,(51)(52)(53)(54)(55)(56)(57). Multidimensional HRQOL tools are more detailed than the RAHC MOF, differentiating between components of physical, mental, social, and emotional health (63,64).…”

Section: Types Of Measuresmentioning

confidence: 99%

See 1 more Smart Citation

Functional Outcomes and Physical Impairments in Pediatric Critical Care Survivors: A Scoping Review*

Ong

Lee

Leow

et al. 2016

Pediatric Critical Care Medicine

124

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Functional impairment may be persistent in pediatric survivors of critical care. Unfortunately, studies varied largely in measurement timing and tools used. The lack of differentiation between impairment in different functional domains limited the generalizability of data. Further studies using a combination of standardized measures at various time points of the disease process can help establish more comprehensive rates of physical impairment.

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Section: Types Of Measuresmentioning

confidence: 99%

Section: Types Of Measuresmentioning

confidence: 99%

Functional Outcomes and Physical Impairments in Pediatric Critical Care Survivors: A Scoping Review*

Ong

Lee

Leow

et al. 2016

Pediatric Critical Care Medicine

124

View full text Add to dashboard Cite

show abstract

“…43,44 Physical domains are particularly affected, especially in sepsis patients. 45,46 Identified risk factors for a reduced quality of life after a critical illness in children include preadmission health-related quality of life, trauma admissions, 47 neurological diagnoses, longer PICU length of stay, worse pediatric cerebral performance category score at baseline, 16 and PTSD symptoms. 48 …”

Section: The Post–intensive Care Syndrome In Childrenmentioning

confidence: 99%

Transforming PICU Culture to Facilitate Early Rehabilitation

Hopkins

Choong

Zebuhr

et al. 2015

J Pediatr Intensive Care

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Children who survive a critical illness are at risk of developing significant, long-lasting morbidities that may include neuromuscular weakness, cognitive impairments, and new mental health disorders. These morbidities, collectively known as post–intensive care syndrome (PICS), may lead to functional impairments, difficulty in school and social settings, and reduced quality of life. Interventions aimed at rehabilitation such as early mobilization, sedation minimization and prevention of ICU-acquired weakness, delirium, and posttraumatic stress disorder may lead to improved clinical outcomes and functional recovery in critically ill children. Acute rehabilitation is challenging to implement in a pediatric intensive care unit (PICU), and a culture change is needed to effect widespread transformation in this setting. Our objectives in this article are to review the evidence on PICS in children and strategies for affecting culture change to facilitate early rehabilitation in the PICU.

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“…[14][15][16][17][18] Physical and cognitive disabilities can result from underlying disease, complications of critical care, and muscle weakness that can impair functional abilities in the long term. 5,[7][8][9][10][19][20][21][22][23][24][25][26][27][28][29][30][31][32][33] Emotional, social, and psychological morbidities, such as changes in behavior, depression, and post-traumatic stress disorder (PTSD), have also been identified in survivors and their families. [33][34][35][36][37][38][39] PICS morbidities lead to impaired quality of life and increased health care costs over time.…”

Section: Introductionmentioning

confidence: 99%

Long-term Sequelae of Pediatric Neurocritical Care: The Parent Perspective

Williams

Eriksson

Piantino

et al. 2018

J Pediatr Intensive Care

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Critical neurologic disease and injury affect thousands of children annually with survivors suffering high rates of chronic morbidities related directly to the illness and to critical care hospitalization. Postintensive care syndrome (PICS) in patients and families encompasses a variety of morbidities including physical, cognitive, emotional, and psychological impairments following critical care. We conducted a focus group study with parents of children surviving pediatric neurocritical care (PNCC) for traumatic brain injury, stroke, meningitis, or encephalitis to determine outcomes important to patients and families, identify barriers to care, and identify potential interventions to improve outcomes. Sixteen parents participated in four groups across Oregon. Three global themes were identified: (1) PNCC is an intense emotional experience for the whole family; (2) PNCC survivorship is a chronic illness; and (3) PNCC has a significant psychological and social impact. Survivors and their families suffer physical, emotional, psychological, cognitive, and social impairments for many years after discharge. Parents in this study highlighted the emotional and psychological distress in survivors and families after PNCC, in contrast to most PNCC research focusing on physical outcomes. Several barriers to care were identified with potential implications on survivor outcomes, including limited pediatric resources in rural settings, perceived lack of awareness of PICS among medical providers, and the substantial financial burden on families. Parents desire improved education surrounding PICS morbidities for families and medical providers, improved communication with primary care providers after discharge, access to educational materials for patients and families, direction to mental health providers, and family support groups to assist them in dealing with morbidities and accessing appropriate resources. Clinicians and researchers should consider the parent perspectives reported here when caring for and evaluating outcomes for children requiring PNCC.

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Factors Associated With Health-Related Quality of Life Changes in Survivors to Pediatric Intensive Care

Cited by 22 publications

References 21 publications

Functional Outcomes and Physical Impairments in Pediatric Critical Care Survivors: A Scoping Review*

Functional Outcomes and Physical Impairments in Pediatric Critical Care Survivors: A Scoping Review*

Transforming PICU Culture to Facilitate Early Rehabilitation

Long-term Sequelae of Pediatric Neurocritical Care: The Parent Perspective

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