Time point T1
Within 4 weeks of
diagnosis/ admission/
surgery
T2
4 months after
diagnosis/ admission/
surgery
T3
7 months after
diagnosis/ admission/
surgery
T4
19 months after
diagnosis/ admission/
surgery
Reported by Parent Parent
Child (7 – 18 years)
Parent
Child (7 – 18 years)
Parent
Child (7 – 18 years)
Year 2010 – 2012 2011 – 2012 2011 – 2013 2012 – 2014
Temperament P:STAI-AD P
Emotional functioning P:PAT2.0 P C Si P:PAT2.0 P C Si
P:BITSEA
P:PedsQL-4.0
C:PedsQL-4.0 C
P:TAPQOL 
P:PAT2.0 P C Si
P:BITSEA
P:PedsQL-4.0
C:PedsQL-4.0 C
P:TAPQOL 
P:PAT2.0 P C Si
P:BITSEA
P:PedsQL-4.0
C:PedsQL-4.0 C
P:TAPQOL 
Time point T1 T2 T3 T4
Trial phase Screening
(0-4 weeks
post admission)
Pre-intervention
(4-12 months
post admission)
Post-intervention
(2 months after T2)
6 month follow-up
(6 months after T3)
Year 2014 – 2016 2014 – 2017 2014 – 2017 2014 – 2017
Emotional functioning P:BASC-2
P:BITSEA
P:PedsQL-4.0
P:BASC-2
P:BITSEA
P:PedsQL-4.0
P:BASC-2
P:BITSEA
P:PedsQL-4.0
Beliefs and values P:VQ P P:VQ P P:VQ P

Featured measurements

BASC-2: Behavior Assessment System for Children -Second Edition
BITSEA: Brief Infant Toddler Social Emotional Assessment
PAT2.0: Psychosocial Assesment Tool - version 2.0
PedsQL: Pediatric Quality of Life Inventory (all modules)
STAI-AD: State-Trait Anxiety Inventory for Adults
TAPQOL: TNO-AZL Preschool Children Quality of Life
VQ: Valuing Questionnaire

Notes

Age appropriate PedsQL modules were used.

PedsQL-4.0: Pediatric Quality of Life Inventory – 4.0 Generic Core Scales.

Cohort:

The BITSEA was used with parents of children aged 12 – 24 months only.

For measures of parent-reported child quality of life (PedsQL and TAPQOL), TAPQOL for children aged 0 – 2 years and PedsQL for children aged 2+ years were used.

RCT:

Age appropriate measures of child adjustment (BITSEA or BASC-2) were used.

Legend

A = Administration report abstraction
C = Index child report (reporting on others)
L = Linkage (to other databases)
M = Medical records data abstraction
O = Observation/direct assessment
N = Nurse report
P = Parent/primary caregiver report
Pe = Peer report
S = Self report
T = Teacher report
X = Undefined
X BF = Pertaining to biological father
X BM = Pertaining to biological mother
C = Pertaining to index child
X F = Pertaining to father
X Fam = Pertaining to family
X G = Pertaining to grandparent(s)
X M = Pertaining to mother
X P = Pertaining to parent(s)
X Pa = Pertaining to partner
X Pe = Pertaining to peers
X Pr = Pertaining to primary caregiver
X Si = Pertaining to sibling(s)