Table 2.

Data collection measures, versions and report format according to age and study participant (child paediatric intensive care unit (PICU) survivor, parent/legal guardian or sibling)

Measure/version (reported by)		1–12 months	13–23 months	2–4 years	5–7 years	8–10 years	11–12 years	13–17 years
Section 1: child PICU survivor
		PICU survivor participant age
1. Pediatric Quality of Life Inventory (PedsQL) Infant Scales Version 4.0—Acute
Infants 1–12 months	(Parent reported)	X
Infants 13–24 months	(Parent reported)		X
2. PedsQL Generic Core Scales Version 4.0—Acute
Toddlers	(Parent reported)			X
Young child	(Child or parent reported)				X
Child	(Child or parent reported)					X	X
Teen	(Child or parent reported)							X
3. PedsQL Multidimensional Fatigue Scale Version 3.0—Acute
Toddlers	(Parent reported)			X
Young child	(Child or parent reported)				X
Child	(Child or parent reported)					X	X
Teen	(Child or parent reported)							X
4. PedsQL Pediatric Pain Questionnaire
Young child	(Child or parent reported)				X
Child	(Child or parent Reported)					X	X
Teen	(Child or parent reported)							X
5. Functional Status Scale	(Parent reported)	X	X	X	X	X	X	X
6. Paediatric Cerebral Performance Category and Paediatric Overall Performance Category	(Parent reported)	X	X	X	X	X	X	X
7. Strengths and Difficulties Questionnaire (SDQ)
2–4 years old	(Parent reported)			X
4–17 years old	(Parent reported)				X	X
11–17 years old	(Child reported)						X	X
8. Child Impact of Events Scale	(Child reported)					X	X	X
9. Children’s Hope Scale (CHS)	(Child reported)					X	X	X
Section 2: parent/legal guardian
						Parent/legal guardian
1. PedsQL Family Impact Module Version 2.0—Acute				(Parent reported)		X
2. State-Trait Anxiety Inventory (Y-6 item)				(Parent reported)		X
3. Patient Health Questionnaire-4				(Parent reported)		X
4. PTSD Checklist (PCL)−5				(Parent reported)		X
Section 3: sibling
Sibling participant age
1. PedsQL Generic Core Scales Version 4.0—Acute
Child				(Child reported)		X	X
Teen				(Child reported)				X
2. SDQ
4–17 years old				(Parent reported)		X
11–17 years old				(Child reported)		X	X
3. Multidimensional Assessment of Caring Activities (YC18)				(Child reported)		X	X	X
4. Positive and Negative Outcomes of Caring (YC20)				(Child reported)		X	X	X
5. CHS				(Child reported)		X	X	X

PTSD, post-traumatic stress disorder.