Introduction
Method
Participant selection
Item generation
Item reduction
Construct validation and scale development
Data analysis
Results
Characteristics of participants
Item generation | Item reduction | Validation | |
---|---|---|---|
Characteristics | |||
Participants | 19 | 31 | 42 |
Sex (m/f) | 12/7 | 14/17 | 27/15 |
Age in years (mean ± SD) | 6.2 ± 1.6 | 5.5 ± 1.5 | 5.7 ± 1.4 |
Multiple births (n, %) | 9 (47%) | 14 (45%) | 10 (24%) |
Birth weight in grams (mean ± SD) | 950 ± 244 | 951 ± 308 | 1041 ± 221 |
Days gestational age at birth (mean ± SD) | 193.7 ± 11.0 | 192.5 ± 8.2 | 195.0 ± 11.9 |
Type of BPD* | |||
Mild (n, %) | 8 (42%) | 9 (29%) | 10 (24%) |
Moderate (n, %) | 4 (21%) | 13 (42%) | 13 (31%) |
Severe (n, %) | 7 (37%) | 8 (26%) | 17 (41%) |
Unknown (n, %) | 0 (0%) | 1 (3%) | 2 (5%) |
Neonatal complications | |||
Necrotizing enterocolitis | |||
Treated conservatively (n, %) | 0 (0%) | 2 (7%) | 0 (0%) |
Needed surgery (n, %) | 2 (11%) | 0 (0%) | 2 (5%) |
Persistent ductus arteriosus | |||
Treated with medication (n, %) | 8 (42%) | 11 (36%) | 19 (45%) |
Needed surgery (n, %) | 5 (26%) | 7 (23%) | 7 (17%) |
Intraventricular hemorrhage | |||
Grade I–II (n, %) | 1 (5%) | 1 (3%) | 8 (19%)‡ |
Grade III–IV (n, %) | 1 (5%) | 3 (10%) | 0 (0%) |
Infection | |||
Sepsis (n, %) | 14 (74%) | 21 (68%) | 27 (64%) |
Pneumonia (n, %) | 3 (16%) | 8 (26%) | 6 (14%) |
Meningitis (n, %) | 1 (5%) | 2 (7%) | 1 (2%) |
Retinopathy of prematurity | |||
Grade I–II (n, %) | 5 (26%) | 4 (13%) | 7 (17%) |
Grade III–V (n, %) | 1 (5%) | 1 (3%) | 0 (0%) |
Nephrocalcinosis (n, %) | 6 (32%) | 2 (7%)† | 12 (29%) |
Results of item generation and item reduction
Construct validation
Parameter | Number of participants | Value (mean ± SD) | Z-score (mean ± SD) |
---|---|---|---|
Height (m) | 42 | 1.17 ± 0.10 | − 0.72 ± 0.96 |
Weight (kg) | 42 | 20.91 ± 0.96 | − 0.84 ± 1.06 |
Body Mass Index | 42 | 15.01 ± 1.42 | − 0.53 ± 0.88 |
Mean arterial pressure (mmHg) | 42 | 73.36 ± 9.07 | |
FEV1 (l) | 40 | 1.15 ± 0.31 | − 0.88 ± 0.97 |
FVC (l) | 38 | 1.43 ± 0.39 | − 0.11 ± 0.99 |
FEV1/FVC (%) | 38 | 81.86 ± 7.61 | − 1.47 ± 0.93 |
FEV25–75 (l) | 38 | 1.18 ± 0.43 | − 1.48 ± 1.01 |
CBCL-TOT (T-score) | 36 | 51.33 ± 9.48 | |
TRF-TOT (T-score) | 19 | 48.47 ± 7.37 | |
TRF-AF (T-score) | 19 | 48.53 ± 0.43 |
Items of BPD-QoL | BMI | MAP | FEV1 | FVC | CBCL-TOT | TRF-TOT | TRF-AF |
α
|
---|---|---|---|---|---|---|---|---|
Number of participants | 42 | 42 | 40 | 38 | 36 | 19 | 19 | |
Pulmonary symptoms |
0.925 | |||||||
Wheezing | 0.359 | |||||||
Sputum in throat or airways | 0.402 | |||||||
Dyspnea when having a cold | 0.391 | 0.359 | ||||||
Having a cold more often |
0.467
| |||||||
Having a cold that lasts longer |
0.588
| |||||||
Bronchial hyperreactivity | 0.446 | |||||||
School functioning |
0.925 | |||||||
Difficulty progressing in school |
0.621
| 0.385 | ||||||
Needing extra support at school |
0.595
| 0.402 | ||||||
Difficulty concentrating |
0.659
| |||||||
Being easily distracted |
0.624
| |||||||
Requiring a lot of structure daily |
0.466
| |||||||
Difficulty with arithmetic | 0.407 | |||||||
Difficulty with grammar | 0.371 | |||||||
Growth and nutrition |
0.845
| |||||||
Stomach ache due to constipation |
0.590
| |||||||
Difficulty eating a serving of food |
0.381
| |||||||
Taking a long time when eating |
0.395
| |||||||
Often don’t want to eat | ||||||||
Feeling cold easily |
0.419
| |||||||
Vomiting easily |
0.422
| |||||||
Being sensitive to loud noises |
0.419
| |||||||
Exercise and locomotion |
0.850
| |||||||
Problems in physical education/sports |
0.430
|
0.542
| ||||||
Problems practicing swimming |
0.481
|
0.437
| 0.404 | |||||
Easily tripping or falling |
0.413
| 0.397 | ||||||
Problems with cycling |
0.468
|
0.424
| 0.388 | |||||
Problems with coordination or balance |
0.427
|
0.438
| ||||||
Exertional dyspnea |
0.360
|
0.419
| ||||||
Not keeping up in exercise/playing |
0.385
|
0.367
| ||||||
Emotional functioning and health care concerns |
0.778 | |||||||
Consults with the general practitioner | 0.361 | 0.454 | ||||||
Feeling less self-confident | 0.406 | |||||||
Fear of being left alone by parent(s) |
0.369
| |||||||
Being shy |
0.453
| |||||||
Having scars of surgeries, punctures or intravenous lines | 0.452 | |||||||
Frequent need to use medication |
0.511
|
Items of BPD-QoL |
N
| Mean (SD) | Percentage of participants with no burden | Percentage of participants with highest burden |
---|---|---|---|---|
Coughing | 42 | 2.12 (1.50) | 19.0 | 0.0 |
Impaction of mucus in airways | 41 | 1.78 (1.29) | 19.5 | 0.0 |
Sputum in throat or airways | 42 | 1.64 (1.50) | 31.0 | 0.0 |
Dyspnea when having a cold | 42 | 1.86 (1.69) | 33.3 | 0.0 |
Having a cold more often | 42 | 1.90 (1.82) | 35.7 | 0.0 |
Having a cold that lasts longer | 42 | 1.90 (1.82) | 35.7 | 2.4 |
Bronchial hyperreactivity | 41 | 1.93 (1.88) | 36.6 | 2.4 |
Having earpain/otitis | 42 | 1.14 (1.26) | 42.9 | 0.0 |
Difficulty progressing in school | 42 | 1.12 (1.69) | 59.5 | 2.4 |
Needing extra support at school | 42 | 1.21 (1.69) | 57.1 | 2.4 |
Difficulty concentrating | 42 | 2.21 (1.87) | 28.6 | 2.4 |
Being easily distracted | 42 | 2.31 (1.92) | 28.6 | 2.4 |
Requiring a lot of structure daily | 42 | 2.48 (1.76) | 23.8 | 2.4 |
Difficulty with arithmetic | 42 | 0.98 (1.66) | 71.4 | 0.0 |
Difficulty with grammar | 41 | 1.05 (1.70) | 68.3 | 0.0 |
Difficulty eating a serving of food | 42 | 1.74 (1.70) | 35.7 | 2.4 |
Taking a long time when eating | 42 | 1.55 (1.70) | 42.9 | 0.0 |
Often don’t want to eat | 42 | 1.26 (1.55) | 47.6 | 0.0 |
Feeling cold easily | 42 | 1.55 (1.69) | 45.2 | 0.0 |
Being sensitive to loud noises | 42 | 1.57 (1.92) | 47.6 | 4.8 |
Problems in physical education/sports | 42 | 0.81 (1.23) | 61.9 | 0.0 |
Problems practicing swimming | 40 | 1.20 (1.86) | 67.5 | 0.0 |
Easily tripping or falling | 42 | 1.52 (1.53) | 35.7 | 2.4 |
Problems with cycling | 42 | 0.67 (1.05) | 66.7 | 0.0 |
Problems with coordination or balance | 42 | 1.02 (1.14) | 45.2 | 0.0 |
Exertional dyspnea | 42 | 1.26 (1.56) | 50.0 | 0.0 |
Not keeping up in exercise/playing | 42 | 0.95 (1.32) | 57.1 | 0.0 |
Trouble parting from parent(s) | 42 | 1.12 (1.55) | 52.4 | 0.0 |
Withdrawal from social situations | 42 | 1.14 (1.35) | 50.0 | 0.0 |
Consults with the general practitioner | 42 | 0.86 (1.22) | 54.8 | 0.0 |
Feeling less self-confident | 42 | 1.55 (1.57) | 38.1 | 0.0 |
Fear of being left alone by parent(s) | 42 | 1.21 (1.62) | 50.0 | 2.4 |
Being shy | 42 | 1.76 (1.43) | 26.2 | 0.0 |
Having scars of surgeries, punctures or intravenous lines | 42 | 1.50 (1.57) | 40.5 | 0.0 |