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.
The objectives of Helping to Optimize Patients' Experiences (HOPE) after Pediatric Critical Illness Cohort Study are: 1. \[Primary\] To characterize physical and cognitive health outcomes of PICU survivors. 2. \[Primary\] To investigate subgroups of critically ill children who have poor medium-term physical and cognitive health outcomes. 3. \[Primary\] To elucidate risk factors for poor physical and cognitive health outcomes in PICU survivors. 4. \[Exploratory\] To investigate the impact of physical and cognitive health of PICU survivors on overall family health. The objectives of Singapore Health outcomes After Critical illness in Kids - Siblings (SHACK-S): Health Outcomes and Experiences of Healthy Siblings in the first 6 months after PICU discharge are: 1. \[Primary\] To describe and compare quality-of-life in healthy siblings at 1, 3 and 6 months after PICU discharge. 2. \[Primary\] To explore the experiences and support needs of healthy siblings 6 months after PICU discharge of a critically ill child. 3. \[Secondary\] To examine the experiences of recovery trajectory of healthy siblings. Thus, HOPE cohort will provide information and insight regarding which groups of PICU patients and associated PICU therapies are associated with the highest risk for poor survivorship. The conduct of this study will also allow us to identify the challenges and find appropriate solutions in performing a cohort study with an emphasis on patient-reported outcomes (e.g., functional status, cognition and quality of life). Concurrently, the SHACK-S cohort will provide insights to understand the impacts of PICU admission on siblings and their recovery.
Study Type
OBSERVATIONAL
Enrollment
404
This is a non-interventional study.
National University Singapore
Singapore, Singapore, Singapore
NOT_YET_RECRUITINGKK Women's and Children's Hospital
Singapore, Singapore, Singapore
RECRUITING[HOPE] Pediatric Evaluation of Disability Inventory (PEDI-CAT) [Physical health outcomes of PICU survivors]
Measures functional domains: Daily Activities, Mobility, Social/Cognitive and Responsibility
Time frame: 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]
Measures 6 domains of functioning: Mental Status, Sensory, Communication, Motor Function, Feeding, Respiratory
Time frame: 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]
Measures of maximum voluntary muscle strength (Only for study participants aged 6 years old and above)
Time frame: 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]
Assessment of aerobic capacity and endurance (Only for study participants aged 6 years old and above)
Time frame: 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]
Measures developmental domains: Physical, Adaptive Behaviour, Social-Emotional, Cognitive and Communiation
Time frame: 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]
Measures developmental domains: Cognitive and Language (Only for study participants aged below 3 years old)
Time frame: 6- and 18-month post-PICU discharge
[HOPE] National Institute of Health Toolbox - Cognition Battery (NIHTB-CB) [Cognitive outcomes of PICU survivors]
Measures cognitive health (Only for study participants aged 3 years old and above)
Time frame: 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]
Screening tool for behavioural and emotional problems (Only for study participants aged 2 years old and above)
Time frame: 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]
Measures generic health-related quality of life in children
Time frame: 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]
Screening tool for behavioural and emotional problems
Time frame: 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]
Measures of social and emotional health and resilience, and screening for behavioural concerns (For siblings ages 4-5 years old)
Time frame: 1-, 3-, and 6-month post-PICU discharge
[SHACK-S] KidCOPE [Experiences and Support Needs of Siblings of Critically Ill Children]
Measure of cogntive and behavioural coping in children and adolescents (For siblings ages 6-18 years old)
Time frame: 1-, 3-, and 6-month post-PICU discharge
[SHACK-S] Semi-structured interview [Experiences and Support Needs of Siblings of Critically Ill Children]
To understand experiences and support needs of siblings of critically ill children
Time frame: 3- and 6-month post-PICU discharge
[HOPE] PedsQL 1.0 Infant Scales [Overall Family Health]
Measure generic health-related quality of life in infants (Only for study participants aged below 2 years old)
Time frame: Baseline, Hospital Discharge (up to 18 months post-PICU discharge), 6-, 12- and 18-month post-PICU discharge
[HOPE] PedsQL 4.0 Short Form 15 (SF15) [Overall Family Health]
Measure generic health-related quality of life in children (Only for study participants aged 2 - 16 years old)
Time frame: Baseline, Hospital Discharge (up to 18 months post-PICU discharge), 6-, 12- and 18-month post-PICU discharge
[HOPE] PedsQL 3.0 Cognitive Functioning Scales [Overall Family Health]
Measures cognitive functioning in paediatric patients (Only for study participants aged 2 - 16 years old)
Time frame: Baseline, Hospital Discharge (up to 18 months post-PICU discharge), 6-, 12- and 18-month post-PICU discharge
[HOPE] PedsQL 2.0 Family Impact Module [Overall Family Health]
Measures the impact of pediatric chronic health conditions on parents and the family
Time frame: Baseline, Hospital Discharge (up to 18 months post-PICU discharge), 6-, 12- and 18-month post-PICU discharge
[HOPE] Patient Health Questionnaire-4 (PHQ-4) [Overall Family Health]
Brief screener for depression and anxiety (in parent)
Time frame: PICU discharge, Hospital Discharge (up to 18 months post-PICU discharge), 6-, 12- and 18-month post-PICU discharge
[HOPE] PTSD Checklist for DSM-5 [Overall Family Health]
Parent self-report measure of DSM-5 symptoms of PTSD
Time frame: 6-, 12- and 18-month post-PICU discharge
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