Background
Methods
Study design
Data collection
Sample size
Data analysis
Results
Participant baseline characteristics
Monthly reviews
Month 1 | Month 2 | Month 3 | Month 4 | Month 5 | Month 6 | Month 7 | Month 8 | Month 9 | Month 10 | Month 11 | Month 12 | TOTAL | Per 100 child-mths | |
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Number of follow-ups completed | 82 | 84 | 82 | 83 | 80 | 80 | 79 | 78 | 78 | 78 | 75 | 72 | 951 | N/A |
Saw GP | ||||||||||||||
For bronchiectasis | 7 | 7 | 8 | 11 | 10 | 14 | 11 | 13 | 9 | 12 | 8 | 8 | 118 | 12.4 |
For other reason | 4 | 8 | 6 | 7 | 5 | 3 | 6 | 8 | 6 | 2 | 3 | 7 | 65 | 6.8 |
Saw ED | ||||||||||||||
For bronchiectasis | 5 | 3 | 2 | 1 | 1 | 0 | 2 | 1 | 2 | 0 | 1 | 0 | 17 | 1.8 |
For other reason | 3 | 0 | 0 | 1 | 0 | 2 | 1 | 0 | 0 | 0 | 1 | 1 | 9 | 1.0 |
Saw specialist | ||||||||||||||
For bronchiectasis | 11 | 7 | 12 | 14 | 15 | 14 | 9 | 12 | 12 | 14 | 13 | 14 | 147 | 15.5 |
For other reason | 6 | 10 | 9 | 7 | 5 | 10 | 8 | 8 | 7 | 6 | 7 | 6 | 89 | 9.4 |
Had medications for any reason | 51 | 47 | 48 | 53 | 51 | 52 | 48 | 52 | 46 | 48 | 43 | 40 | 579 | 60.9 |
Had antibiotics for any reason | 37 | 34 | 35 | 40 | 37 | 39 | 36 | 42 | 36 | 37 | 35 | 29 | 437 | 46.0 |
Had inhaled corticosteroids for any reason | 9 | 13 | 11 | 15 | 11 | 12 | 12) | 11 | 12 | 9 | 6 | 8 | 129 | 13.6 |
Missed school/ childcare | 21 | 17 | 15 | 20 | 22 | 26 | 18 | 22 | 19 | 21 | 20 | 16 | 237 | 24.9 |
Primary carer missed work | 10 | 9 | 9 | 6 | 5 | 10 | 8 | 10 | 13 | 9 | 11 | 10 | 110 | 11.6a |
Secondary carer missed work | 4 | 4 | 5 | 2 | 2 | 4 | 1 | 2 | 3 | 3 | 2 | 1 | 33 | 3.5a |
Median days missed school/ childcare (IQR) | 3 (2–7) | 3 (2–5) | 4 (2–7) | 3 (2–5.5) | 3 (2–5) | 4 (2.5–7) | 3 (1–5) | 2.5 (1–4) | 4 (1–5) | 3 (2–5.5) | 3 (1–5) | 3.5 (1.5–5.5) | 948 | 12.0/child-year |
Median days primary carer missed work (IQR) | 2.5 (1.5–4) | 2 (1–13) | 3 (1.5–7.5) | 2 (1.25–2) | 2 (2–3) | 3 (1.5–4) | 1 (1–4) | 1.5 (1–2.5) | 2 (1–3) | 3 (1–4) | 2 (1–2.5) | 2.5 (1.5–3) | 278 | 3.5 /child-yeara |
Median days secondary carer missed work (IQR) | 1 (1–1) | 3 (3–3) | 1 (1–1) | 1 (0–2) | 1 (1–1) | 1 (0–1) | 1 (1–1) | 1.5 (1–2) | 4 (1–7) | 2 (1–2) | 1 (1–1) | 2 (2–2) | 37 | 0.5/child-yeara |
Exacerbations
All, n = 264 | Spring, n = 59 | Summer, n = 54 | Autumn, n = 62 | Winter, n = 82 | |
---|---|---|---|---|---|
n (%)
|
n (%)
|
n (%)
|
n (%)
|
n (%)
| |
General practitioner visit | 123 (46.6) | 30 (50.9) | 26 (48.2) | 28 (45.2) | 35 (42.7) |
Had a prescription at home to fill/had antibiotics at home | 77 (29.2) | 15 (25.4) | 16 (29.6) | 16 (25.8) | 28 (34.2) |
Specialist visit | 69 (26.1) | 20 (33.9) | 12 (22.2) | 15 (24.2) | 22 (26.8) |
Physiotherapy | 41 (15.5) | 7 (11.9) | 9 (16.7) | 10 (16.1) | 13 (15.9) |
Telephone advice from respiratory clinic nurse | 32 (12.1) | 4 (6.8) | 3 (5.6) | 12 (19.4) | 12 (14.6) |
Pathology | 30 (11.4) | 4 (6.8) | 9 (16.7) | 9 (14.5) | 8 (9.8) |
Haematology (full blood count) | 15 | 4 | 4 | 5 | 2 |
Biochemistry | 10 | 4 | 3 | 3 | 0 |
Sputum culture | 9 | 1 | 3 | 4 | 1 |
Antibiotic blood levels | 4 | 0 | 3 | 1 | 0 |
Throat swab for virus nucleic acid amplification testing | 3 | 0 | 1 | 2 | 0 |
Nasopharyngeal aspirate for virus nucleic acid amplification testing | 1 | 0 | 0 | 0 | 1 |
Bronchoalveolar lavage | 1 | 0 | 0 | 0 | 1 |
Immunology (radioallergoabsorbent test) | 1 | 0 | 0 | 1 | 0 |
Missing | 4 | 0 | 0 | 0 | 4 |
In-patient hospital admission | 30 (11.4) | 4 (6.8) | 8 (14.8) | 9 (14.5) | 8 (9.8) |
Had ‘hospital in the home’ following inpatient admission | 10 | 0 | 4 | 3 | 2 |
Emergency department presentation | 25 (9.5) | 3 (5.1) | 5 (9.3) | 6 (9.7) | 9 (11.0) |
Medical imaging | 21 (8.0) | 2 (3.4) | 5 (9.3) | 5 (8.1) | 9 (11.0) |
Chest radiograph | 14 | 1 | 4 | 3 | 6 |
Chest computed tomography scan | 2 | 0 | 1 | 0 | 1 |
Other | 7 | 1 | 1 | 2 | 3 |
Missing | 2 | 0 | 0 | 0 | 1 |
Respiratory function testing (spirometry) | 16 (6.1) | 4 (6.8) | 3 (5.6) | 4 (6.5) | 5 (6.1) |
Saw other services (during hospitalisation) | 12 (4.6) | 3 (5.1) | 1 (1.9) | 3 (4.8) | 5 (6.1) |
Social worker | 4 | 1 | 1 | 2 | 0 |
Dietician | 3 | 1 | 0 | 1 | 1 |
Occupational therapist | 1 | 0 | 0 | 0 | 1 |
Cardiologist | 1 | 0 | 0 | 0 | 1 |
Surgical | 1 | 1 | 0 | 0 | 0 |
Consult liaison | 1 | 1 | 0 | 0 | 0 |
Dentist | 1 | 0 | 0 | 0 | 1 |
Missing | 1 | 0 | 0 | 0 | 1 |
Over the counter treatments | 8 (2.9) | 1 (1.7) | 2 (3.7) | 4 (6.5) | 1 (1.2) |
Consultation with community health nurse / respiratory clinic nurse | 7 (2.7) | 1 (1.7) | 1 (1.9) | 3 (3.2) | 3 (3.7) |
Hospital school (during hospitalisation) | 7 (2.7) | 2 (3.4) | 0 (0.0) | 3 (4.8) | 2 (2.4) |
Other procedures | 2 (0.8) | 0 (0.0) | 1 (1.9) | 0 (0.0) | 1 (1.2) |
Bronchoscopy | 1 | 0 | 1 | 0 | 0 |
Scheduled intravenous line maintenance | 1 | 0 | 0 | 0 | 3 |
Telephone advice from other doctor/specialist | 2 (0.8) | 1 (1.7) | 0 (0.0) | 0 (0.0) | 1 (1.2) |
Alternative therapies | 2 (0.8) | 1 (1.7) | 0 (0.0) | 0 (0.0) | 1 (1.2) |
Glutathione nebulised medication | 1 | 1 | 0 | 0 | 0 |
Acupuncture | 1 | 0 | 0 | 0 | 1 |
Chinese medicine | 1 | 0 | 0 | 0 | 1 |
Telephone advice from general nurse | 1 (0.4) | 0 (0.0) | 0 (0.0) | 1 (1.6) | 0 (0.0) |
Clinic visits
Baseline N = 77 | Month 3 N = 40 | Month 6 N = 48 | Month 9 N = 36 | Month 12 N = 35 | Total N = 236 | |
---|---|---|---|---|---|---|
Visit details | ||||||
Consultant Respiratory Physician | 58 | 31 | 40 | 30 | 33 | 192 (81.4) |
Respiratory Fellow (advanced trainee) | 17 | 7 | 5 | 3 | 1 | 33 (14.0) |
Nurse | 2 | 2 | 3 | 3 | 1 | 11 (4.7) |
Additional clinical services utilised | ||||||
Respiratory Function testing | 51 | 25 | 26 | 26 | 26 | 154 (65.3) |
Physiotherapy | 27 | 17 | 16 | 14 | 11 | 85 (36.0) |
Other allied health | 7 | 5 | 4 | 3 | 0 | 19 (8.1) |
Respiratory nurse consultant | 22 | 14 | 12 | 7 | 7 | 62 (26.3) |
Pharmacy - Prescription filled | 23 | 14 | 12 | 11 | 7 | 67 (28.4) |
Pathology | 11 | 7 | 8 | 4 | 5 | 35 (14.8) |
Medical Imaging | 3 | 2 | 1 | 3 | 2 | 11 (4.7) |
Box study or exercise challenge | 0 | 1 | 0 | 2 | 1 | 4 (1.7) |
Other consults | 3 | 7 | 3 | 3 | 2 | 18 (7.6) |
Healthcare carda | ||||||
Yes | 60 | 30 | 37 | 25 | 29 | 181 (76.7) |
No | 15 | 9 | 10 | 9 | 6 | 49 (20.8) |
Missing | 2 | 1 | 1 | 2 | 0 | 6 (2.5) |
Private health insurance | ||||||
Yes | 23 | 13 | 15 | 15 | 9 | 75 (31.8) |
No | 50 | 26 | 31 | 18 | 26 | 151 (64.0) |
Missing | 4 | 1 | 2 | 3 | 0 | 10 (4.2) |
Primary carer required to take leave to attend clinic appointment | ||||||
Sick/care’s leave taken | 10 | 2 | 5 | 6 | 3 | 26 (11.0) |
No leave required | 27 | 14 | 21 | 11 | 15 | 88 (37.3) |
Unpaid leave taken | 7 | 0 | 2 | 4 | 2 | 15 (6.4) |
Not in paid employment | 25 | 11 | 12 | 5 | 8 | 61 (25.9) |
Did not attend | 3 | 0 | 1 | 3 | 2 | 9 (3.8) |
Other | 4 | 4 | 3 | 3 | 3 | 17 (7.2) |
Missing | 1 | 9 | 4 | 4 | 2 | 20 (8.5) |
Secondary carer required to take leave to attend clinic appointment | ||||||
Sick/care’s leave taken | 3 | 1 | 2 | 2 | 2 | 10 (4.2) |
No leave required | 7 | 2 | 1 | 3 | 2 | 15 (6.4) |
Unpaid leave taken | 1 | 1 | 0 | 0 | 0 | 2 (0.9) |
Not in paid employment | 1 | 1 | 0 | 2 | 0 | 4 (1.7) |
Did not attend | 41 | 15 | 16 | 13 | 16 | 101 (42.8) |
Other | 1 | 1 | 0 | 1 | 0 | 3 (1.3) |
Missing/NA | 23 | 19 | 29 | 15 | 15 | 101 (42.8) |
Additional carer required to take leave to attend clinic appointment | ||||||
No leave required | 1 | 0 | 0 | 0 | 0 | 1 (0.4) |
Not in paid employment | 1 | 0 | 0 | 0 | 0 | 1 (0.4) |
Did not attend | 5 | 2 | 3 | 0 | 0 | 10 (4.2) |
Missing/NA | 70 | 38 | 45 | 36 | 35 | 224 (94.9) |
Quality of life and cough severity
Parent Cough-QoL (N = 85) | Child Cough-QoL | ||||
---|---|---|---|---|---|
Number completed | Median (IQR) | Number of eligible children (aged > 7-years) | Number completed | Median (IQR) | |
Baseline | 72 | 6.0 (4.7–6.9) | 49 | 35 | 6.5 (4.9–7.0) |
Month 3 | 41 | 6.5 (5.4–6.9) | 51 | 20 | 6.1 (4.5–6.7) |
Month 6 | 55 | 5.9 (4.3–6.8) | 54 | 25 | 6.4 (4.3–7.0) |
Month 9 | 46 | 5.9 (4.9–7.0) | 57 | 19 | 6.6 (3.3–6.9) |
Month 12 | 47 | 5.9 (4.7–7.0) | 57 | 26 | 6.8 (5.0–7.0) |