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
Parent-child bonding  P:PAT2.0 1 P:PAT2.0 1 P:PAT2.0 1 P:PAT2.0 1
Peer relations/problems  P:PAT2.0 C Si P:PAT2.0 C Si
P:PedsQL-4.0
C:PedsQL-4.0 C
P:SDQ
C:SDQ C
P:TAPQOL
P:PAT2.0 C Si
P:PedsQL-4.0
C:PedsQL-4.0 C
P:SDQ
C:SDQ C
P:TAPQOL
P:PAT2.0 C Si
P:PedsQL-4.0
C:PedsQL-4.0 C
P:SDQ
C:SDQ C
P:TAPQOL
General relations P:AQoL-8D P  P:AQoL-8D P  P:AQoL-8D P P:AQoL-8D P
Family functioning  P:FES 2  P:FaMM  P:FaMM   P:FaMM
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
Intimate/romantic relations P:WHOQOL-BREF P P:WHOQOL-BREF P P:WHOQOL-BREF P
Sexual relations P:WHOQOL-BREF P P:WHOQOL-BREF P P:WHOQOL-BREF P
Peer relations/problems P:PedsQL-4.0 P:PedsQL-4.0 P:PedsQL-4.0
General relations P:BASC-2
P:WHOQOL-BREF
P
P:BASC-2
P:WHOQOL-BREF
P
P:BASC-2
P:WHOQOL-BREF
P
Family functioning P:FaMM P:FaMM P:FaMM

Featured measurements

AQoL: Assessment of Quality of Life (various instruments)
BASC-2: Behavior Assessment System for Children -Second Edition
FaMM: Family Management Measure
FES: Family Environment Scale
PAT2.0: Psychosocial Assesment Tool - version 2.0
PedsQL: Pediatric Quality of Life Inventory (all modules)
SDQ: Strengths and Difficulties Questionnaire
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 In consultation with the original authors, the Psychosocial Assessment Tool was extended to include four novel items examining infant risk factors (sleeping, feeding, crying and bonding difficulties), for use with parents of infants diagnosed with congenital heart disease

2 The 3rd edition of the Family Environment Scale was used

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)