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
Age/DOB P:SDV P C
Education (level completed, current study status) P:SDV P  P:SDV P  P:SDV P  P:SDV P
Employment status/occupation P:SDV  P:SDV  P:SDV  P:SDV
Income/financial situation P:SDV P  P:SDV P  P:SDV P  P:SDV P
Ethnicity P:PAT2.0 P C  P:PAT2.0 P C  P:PAT2.0 P C  P:PAT2.0 P C
Country of birth P:SDV P C
Living arrangements P:PAT2.0 P:PAT2.0 P:PAT2.0 P:PAT2.0
Marital/relationship status P:SDV P P:SDV P P:SDV P P:SDV P
Sex P:SDV P C
Government concession cards/allowances P:PAT2.0 P:PAT2.0 P:PAT2.0 P:PAT2.0
Private health insurance status P:PAT2.0 P:PAT2.0 P:PAT2.0 P:PAT2.0
Relationship to child P:PAT2.0 P:PAT2.0 P:PAT2.0 P:PAT2.0
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
Age/DOB P:SDV P C
Education (level completed,
current study status)
P:SDV P Pa
Employment
status/occupation
P:SDV P Pa P:SDV P Pa P:SDV P Pa P:SDV P Pa
Income/financial
situation
P:SDV P Pa P:WHOQOL-BREF P P:WHOQOL-BREF P P:WHOQOL-BREF P
Ethnicity P:SDV P
Country of birth P:SDV P
Language(s)
spoken at home
P:SDV
Living arrangements P:SDV Fam
House moves P:SDV P Pa P:SDV P Pa P:SDV P Pa
Marital/relationship status P:SDV P P:SDV P P:SDV P P:SDV P
Sex P:SDV P C

Featured measurements

PAT2.0: Psychosocial Assesment Tool - version 2.0
SDV: Study Devised Variable
WHOQOL-BREF: World Health Organization Quality of Life – Brief (Australian version)

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)