Improvement in pediatric intensive care unit (PICU) supportive care has led to improvement in clinical outcomes and decreased mortality in pediatric critical illness. However, PICU survivors are at risk of long-term health sequalae. Given the increased recognition of physical, cognitive, and psychological sequelae in PICU survivors, the concept of post-intensive care syndrome-pediatrics (PICS-p) has been proposed. Besides the PICU patient/survivor, the PICS-p framework also highlights the impacts of a child's critical illness has on the family. The impact of a PICU admission extends beyond the patient and parents, potentially affecting healthy siblings who are navigating their own developmental challenges. Healthy siblings may face emotional distress, increased responsibilities, and disruptions in their daily routines, all of which can contribute to long-term negative outcomes if unaddressed. Thus, this study consists of two cohorts to understand the long-term physical, cognitive, and psychological outcomes in PICU survivors and their families, and the short-term impacts on siblings of critically ill children.
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[HOPE] Pediatric Evaluation of Disability Inventory (PEDI-CAT) [Physical health outcomes of PICU survivors]
Timeframe: Baseline, Hospital Discharge (up to 18 months post-PICU discharge), 6-, 12- and 18-month post-PICU discharge
[HOPE] Functional Status Scale (FSS) [Physical health outcomes of PICU survivors]
Timeframe: Baseline, Hospital Discharge (up to 18 months post-PICU discharge), 6-, 12- and 18-month post-PICU discharge
[HOPE] Hand-grip strength test [Physical health outcomes of PICU survivors]
Timeframe: Hospital Discharge (up to 18 months post-PICU discharge), 6-, 12- and 18-month post-PICU discharge
[HOPE] 6-minute walk test [Physical health outcomes of PICU survivors]
Timeframe: Hospital Discharge (up to 18 months post-PICU discharge), 6-, 12- and 18-month post-PICU discharge
[HOPE] Developmental Profile-4 (DP-4) [Cognitive outcomes of PICU survivors]
Timeframe: Baseline, 6-, 12- and 18-month post-PICU discharge
[HOPE] Bayley Scales of Infant and Toddler Development - 4th edition (Bayley-4) [Cognitive outcomes of PICU survivors]
Timeframe: 6- and 18-month post-PICU discharge
[HOPE] National Institute of Health Toolbox - Cognition Battery (NIHTB-CB) [Cognitive outcomes of PICU survivors]
Timeframe: Hospital Discharge (up to 18 months post-PICU discharge), 6-, 12- and 18-month post-PICU discharge
[HOPE] Strengths and Difficulty Questionnaire (SDQ) [Cognitive outcomes of PICU survivors]
Timeframe: Baseline, 6-, 12- and 18-month post-PICU discharge
[SHACK-S] PedsQL 4.0 Short Form 15 (SF5) [Quality of Life in Siblings of Critically Ill Children]
Timeframe: PICU discharge, 1-, 3-, and 6-month post-PICU discharge
[SHACK-S] Strengths and Difficulties Questionnaire (SDQ) [Experiences and Support Needs of Siblings of Critically Ill Children]
Timeframe: 1-, 3-, and 6-month post-PICU discharge
[SHACK-S] Devereux Early Childhood Assessment for Preschoolers, Second Edition (DECA-P2) [Experiences and Support Needs of Siblings of Critically Ill Children]
Timeframe: 1-, 3-, and 6-month post-PICU discharge
[SHACK-S] KidCOPE [Experiences and Support Needs of Siblings of Critically Ill Children]
Timeframe: 1-, 3-, and 6-month post-PICU discharge
[SHACK-S] Semi-structured interview [Experiences and Support Needs of Siblings of Critically Ill Children]
Timeframe: 3- and 6-month post-PICU discharge