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
Number of days of hospitalisation(s) M M M M
Number of visits to emergency department M M M M
Serious childhood illness or injury
(SCII) category
(cardiology, oncology,
neurology, PICU)
X
Diagnosis of SCII X
Date of diagnosis M
Severity of SCII O:SOIS 1
Experience of SCII P:PECI P
P:FaMM P
C:BBSC C
P:PECI P
P:FaMM P
C:BBSC C
P:PECI P
P:FaMM P
C:BBSC C
Family management of SCII P:FaMM P:FaMM P:FaMM
Economic impact of SCII P:SDV P:SDV P:SDV P:SDV
Psychosocial health risk O:PAT-S Fam 2 O:PAT-S Fam 2
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
Number of days
of hospitalisation(s)
M M M M
Number of visits
to emergency department
M M M M
Serious childhood illness
or injury (SCII) category
(cardiology, oncology,
neurology, PICU)
Diagnosis of SCII X
Date of diagnosis M
Experience of SCII P:PECI P
P:FaMM P
P:PECI P
P:FaMM P
P:PECI P
P:FaMM P
Family management of SCII P:FaMM P:FaMM P:FaMM
Economic impact of SCII P:SDV P:SDV P:SDV P:SDV

Featured measurements

BBSC: Benefit and Burden Scale for Children
FaMM: Family Management Measure
PAT-S: Psychosocial Assesment Tool - Staff
PECI: Parent Experience of Child Illness
SDV: Study Devised Variable
SOIS: Severity of Illness Scale

Notes

Cohort:

1 Doctor described

2 Social worker reported

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)