AREST CF: Respiratory health

Group CF 0 – 2 years and preschool (3 – 6 years) Non-CF Bronchoscopy/ BAL Non-CF lung function preschool
Wave W1 W2 W3 W4 W5 W6 W7 W8 W9 W10 N/A Screening Visit 1 Visit 2 Visit 3 Visit 4 (optional)
Age 2 – 4 months 1 year 2 years 3 years 3.5 years 4 years 4.5 years 5 years 5.5 years 6 years 0 – 6 years 3 – 6 years 3 – 6 years Visit 1 + 6 months Visit 1 + 12 months Visit 3 + 12 months
Year 2006 – ongoing 2006 – ongoing 2006 – ongoing 2006 – ongoing 2006 – ongoing 2006 – ongoing 2006 – ongoing 2006 – ongoing 2006 – ongoing 2006 – ongoing 2010 – ongoing 2014 – ongoing 2014 – ongoing 2014 – ongoing 2014 – ongoing 2014 – ongoing
Respiratory function test 1 O:RVRTC
O:MBW
O:PLETH
O:TV		 O:RVRTC
O:MBW
O:PLETH
O:TV		 O:RVRTC
O:MBW
O:PLETH
O:TV		 O:FOT
O:MBW		 O:FOT
O:MBW		 O:FOT
O:MBW		 O:FOT
O:MBW		 O:FOT
O:MBW
O:SPIRO		 O:FOT
O:MBW
O:SPIRO		 O:FOT
O:MBW
O:SPIRO		 O:FOT
O:SBW
O:MBW
O:SPIRO 2		 O:FOT
O:SBW
O:MBW
O:SPIRO 2		 O:FOT
O:SBW
O:MBW
O:SPIRO 2		 O:FOT
O:SBW
O:MBW
O:SPIRO 2
Respiratory tract infection(s) P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ
Asthma P:SDV P:RSQ P:RSQ P:RSQ P:RSQ
Wheezing P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:SDV P:RSQ P:RSQ P:RSQ P:RSQ
Hay fever P:SDV P:RSQ P:RSQ P:RSQ P:RSQ
Coughing P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:SDV P:RSQ P:RSQ P:RSQ P:RSQ
Sputum P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ
Bronchoalveolar lavage (BAL) X X X X X X X X X X X
Reason for BAL M M M M M M M M M M M
BAL specimen collection X X X X X X X X X X X
Bronchial brushing specimen
collection (optional)		 X X X X X X X X X X X
CT (chest) O (subset, 2006 – 2010) O O (subset, 2006 – 2010) O O (subset, 2006 – 2010) O O (subset, 2006 – 2010)
Electronic Impedance
Tomography (EIT) (optional) 3 4		 O O O
Hospitalisation(s) for respiratory
reasons (e.g. bronciolitis,
pneumonia, lower or
upper respiratory tract infection)		 P:CF RSQ
M		 P:CF RSQ
M		 P:CF RSQ
M		 P:CF RSQ
M		 P:CF RSQ
M		 P:CF RSQ
M		 P:CF RSQ
M		 P:CF RSQ
M		 P:CF RSQ
M		 P:CF RSQ
M		 P:SDV
Medications (respiratory-related
(including inhaled agents),
anti-fungals, anti-reflux,
other prescriptions)		 P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:CF RSQ P:SDV P:RSQ P:RSQ P:RSQ P:RSQ
Visit Screening/ enrolment Visit 1A Baseline Visit 1B Visit 2 Visit 3 Visit 4 Visit 5A Visit 5B Phone interviews (weekly)
Age (3 m ± 1m) (4 m ± 1m) Within 2 weeks of visit 1A (6 m ± 1m) (8 m ± 1m) (10 m ± 1m) (12 m ± 1m) Within 2 weeks of visit 5A Weekly
Year 2013 – 2016 2013 – 2016 2013 – 2016 2013 – 2017 2013 – 2017 2013 – 2017 2014 – 2017 2014 – 2017 2013 – 2017
Respiratory function test O:RVRTC 1
O:MBW 1
O:PLETH 1
O:TV 1		 O:RVRTC 1
O:MBW 1
O:PLETH 1
O:TV 1
Bronchoalveolar lavage
(BAL) specimen collection		 X 1 X 1
CT (chest) O 1
Hospitalisation(s) for respiratory reasons
(e.g. bronciolitis, pneumonia, lower or upper
respiratory tract infection)		 M M M M M M M
Group CF school age (7 – 9 years) Non-CF lung function school age
Wave W1 W2 W3 W4 W5 Screening Visit 1 Visit 2 Visit 3
Age 7 years 7.5 years 8 years 8.5 years 9 years 7 – 9 years 7 – 9 years Visit 1 + 6 months Visit 1 + 12 months
Year 2013 – ongoing 2013 – ongoing 2013 – ongoing 2013 – ongoing 2013 – ongoing 2016 – ongoing 2016 – ongoing 2016 – ongoing 2016 – ongoing
Respiratory function test 1 O:SPIRO
O:FOT 2
O:SBW 2
O:MBW 2		 O:SPIRO
O:FOT 2
O:SBW 2
O:MBW 2		 O:SPIRO
O:FOT 2
O:SBW 2
O:MBW 2		 O:SPIRO
O:FOT 2
O:SBW 2
O:MBW 2		 O:SPIRO
O:FOT 2
O:SBW 2
O:MBW 2		 O:SPIRO 2
O:FOT 2
O:SBW 2
O:MBW 2		 O:SPIRO 2
O:FOT 2
O:SBW 2
O:MBW 2		 O:SPIRO 2
O:FOT 2
O:SBW 2
O:MBW 2
Respiratory tract infection(s) P:CF RSQ P:CF RSQ P:CF RSQ
Asthma P:RSQ P:RSQ P:RSQ
Wheezing P:CF RSQ P:CF RSQ P:CF RSQ P:RSQ P:RSQ P:RSQ
Hay fever P:RSQ P:RSQ P:RSQ
Coughing P:CF RSQ P:CF RSQ P:CF RSQ P:RSQ P:RSQ P:RSQ
Sputum P:CF RSQ P:CF RSQ P:CF RSQ
CT (chest) O O O
Induced sputum collection X X X
Hospitalisation(s) for respiratory reasons
(e.g. bronciolitis, pneumonia,
lower or upper respiratory tract infection)		 P:CF RSQ
M		 P:CF RSQ
M		 P:CF RSQ
M
Medications
(respiratory-related
(including inhaled agents),
anti-fungals, anti-reflux,
other prescriptions)		 P:CF RSQ P:CF RSQ P:CF RSQ P:RSQ P:RSQ P:RSQ

Featured measurements

CF RSQ: CF Respiratory Symptom Questionnaire
FOT: Forced Oscillation Technique
ISAAC: International Study of Asthma and Allergy in Children adaptation
MBW: Multiple Breath Washout
PLETH: Plethysmography
RSQ: Respiratory Symptom Questionnaire
RVRTC: Raised Volume Rapid abdominal Thoraco-Compression
SBW: Single Breath Washout
SDV: Study Devised Variable
SPIRO: Spirometry
TV: Tidal Volume

Notes

0 – 6 years

The CF RSQ was developed by the AREST CF team and collects information about the child’s health (cough, sputum, respiratory tract infection, admissions, exercise and medications) in the preceding three months.

The RSQ was developed by the AREST CF team for non-CF participants and includes questions adapted from ISAAC.

1 If Pseudomonas aeruginosa is detected via sputum or BAL samples in a preschool (3 – 6 years) CF cohort participant, respiratory function tests (SBW and MBW) are performed

2 Spirometry only performed in children aged 5 and 6 years

3 EIT measured during infant MBW

4 EIT measurements were started in 2017

0 – 1 year sub-study

1 As per the Detecting Early Lung Disease (0 – 6 years) schedule

7 – 9 years

The CF RSQ was developed by the AREST CF team and collects information about the child’s health (cough, sputum, respiratory tract infection, admissions, exercise and medications) in the preceding three months.

The RSQ was developed by the AREST CF team for non-CF participants and includes questions adapted from ISAAC.

1 If Pseudomonas aeruginosa is detected in a school age (7 – 9 years) CF cohort participant, respiratory function tests (SBW and MBW) are performed pre and post eradication.

2 Optional assessments.

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
X 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)