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
Social support
(including emotional,
instrumental, informational)
P:PAT2.0
P:SDV
P:PAT2.0
P:SDV
P:PAT2.0
P:SDV
P:PAT2.0
P:SDV
Self-esteem P:AQoL-8D P P:AQoL-8D P P:AQoL-8D P P:AQoL-8D P
Prosocial behaviour P:SDQ
C:SDQ C
P:SDQ
C:SDQ C
P:SDQ
C:SDQ C
Quality of life P:AQoL-8D P P:AQoL-8D P
P:PedsQL-4.0
C:PedsQL-4.0 C
P:TAPQOL
P:AQoL-8D P
P:PedsQL-4.0
C:PedsQL-4.0 C
P:TAPQOL
P:AQoL-8D P
P:PedsQL-4.0
C:PedsQL-4.0 C
P:TAPQOL
Stressful life events P:PAT2.0 Fam P:PAT2.0 Fam P:PAT2.0 Fam P:PAT2.0 Fam
Positive adjustment P:PTGI-SF
Psychosocial health P:AQoL-8D P
P:PAT2.0 P C Si
O:PAT-S Fam 1
P:AQoL-8D P
P:PAT2.0 P C Si
O:PAT-S Fam 1
P:AQoL-8D P
P:PAT2.0 P C Si
P:AQoL-8D P
P:PAT2.0 P C Si
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
Coping skills P:FFMQ-SF P P:FFMQ-SF P P:FFMQ-SF P
Life satisfaction P:WHOQOL-BREF P P:WHOQOL-BREF P P:WHOQOL-BREF P
Social skills P:BASC-2 P:BASC-2 P:BASC-2
Social support
(including emotional,
instrumental, informational)
P:WHOQOL-BREF P P:WHOQOL-BREF P P:WHOQOL-BREF P
Self-esteem P:WHOQOL-BREF P P:WHOQOL-BREF P P:WHOQOL-BREF P
Prosocial behaviour P:BASC-2 P:BASC-2 P:BASC-2
Quality of life P:PedsQL-4.0
P:WHOQOL-BREF
P
P:PedsQL-4.0
P:WHOQOL-BREF
P
P:PedsQL-4.0
P:WHOQOL-BREF
P
Stressful life events P:SDV P P:SDV P Pa P:SDV P Pa P:SDV P Pa
Postive adjustment P:PTGI-SF P P:PTGI-SF P
Psychosocial health P:WHOQOL-BREF P P:WHOQOL-BREF P P:WHOQOL-BREF P

Featured measurements

AQoL: Assessment of Quality of Life (various instruments)
BASC-2: Behavior Assessment System for Children -Second Edition
FFMQ-SF: Five Facet Mindfulness Questionnaire – Short Form
PAT-S: Psychosocial Assesment Tool - Staff
PAT2.0: Psychosocial Assesment Tool - version 2.0
PECI: Parent Experience of Child Illness
PedsQL: Pediatric Quality of Life Inventory (all modules)
PTGI-SF: Posttraumatic Growth Inventory - Short Form
SDQ: Strengths and Difficulties Questionnaire
SDV: Study Devised Variable
TAPQOL: TNO-AZL Preschool Children Quality of Life
WHOQOL-BREF: World Health Organization Quality of Life – Brief (Australian version)

Notes

Age appropriate PedsQL modules were used.

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

Cohort:

1 Social worker reported

The parent-reported SDQ was used with parents of children aged 2+ years 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.

AQoL-8D: Assessment of Quality of Life – 8D

RCT:

The BASC-2 was used with parents of children aged 2 years or over.

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)