Introduction
Methods
Study populations and data collection
General population sample
Respiratory illness sample
Infant and Toddler Quality of Life Questionnaire
Scale | Number of items | Description low score | Description high score |
---|---|---|---|
Physical functioning (PF) | 10 | Child is considerably limited in performing physical activities such as eating, sleeping, grasping, and playing due to health problems | Child performs all types of physical activities such as eating, sleeping, grasping, and playing without limitations due to health problems |
Growth and development (GD) | 10 | Parent is very dissatisfied with development (physical growth, motor, language, cognitive), habits (eating, feeding, sleeping) and overall temperament | Parent is very satisfied with development (physical growth, motor, language, cognitive), habits (eating, feeding, sleeping) and overall temperament |
Bodily pain (BP) | 3 | Child has extremely severe, frequent and limiting bodily pain/discomfort | Child has no pain or limitations due to pain/discomfort |
Temperament and moods (TM) | 18 | Child very often has certain moods and tempera-ments, such as sleeping/eating dimculties, crankiness, fussiness unresponsiveness and lack of playfulness and alertness | Child never has certain moods and temperaments, such as sleeping/eating dimculties, crankiness, fussiness unresponsiveness and lack of playfulness and alertness |
General behavior (BE) | 13 | Parent believes child's behavior is poor and likely to get worse | Parent believes child's behavior is excellent and will continue as such |
Getting along (GA) | 15 | Child very often exhibits behavioral problems, such as not following directions, hitting, biting others, throwing tantrums, and being easily distracted, while positive behavior, such as ability to cooperate, to appear sorry, and to adjust to new situations is seldom shown | Child never exhibits behavioral problems, such as not following directions, hitting, biting others, throwing tantrums, and being easily distracted, while positive behavior, such as ability to cooperate, to appear sorry, and to adjust to new situations is frequently shown |
General health perceptions (GH) | 12 | Parent believes child's health is poor and likely to get worse | Parent believes child's health is excellent and will continue as such |
Parental impact: emotional (PE) | 7 | Parent experiences a great deal of emotional worry/concern as a result of child's physical and/or psychosocial health and/or growth and development | Parent doesn't experience feelings of emotional worry/concern as a result of child's physical and/or psychosocial health and/or growth and development |
Parental impact: time (PT) Family activities (FA) | 7 | Parent experiences a lot of limitations in time avail-able for personal needs due to child's physical and/or psychosocial health and/or growth and development | Parent doesn't experience limitations in time avail-able for personal needs due to child's physical and/or psychosocial health and/or growth and development |
Family activities (FA) | 6 | The child's health and/or growth and development very often limits and interrupts family activities or is a source of family tension | The child's health and/or growth and development never limits and interrupts family activities or is a source of family tension |
Family cohesion (FC) | 1 | Family's ability to get along is rated as ‘poor’ | Family's ability to get along is rated as ‘excellent’ |
Change in health (CH) | 1 | Child's health is much worse now than 1 year ago | Child's health is much better now than 1 year ago |
TNO-AZL Pre-school Children Quality of Life Questionnaire (TAPQOL)
TAPQOL-scales | Population | Sleeping | Appetite | Lung problems | Stomach problems | Skin problems | Motor functioning | Problem behavior | Social functioning | Communicatior | Positive mood | Anxiety | Liveliness |
---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Physical | General population sample | 0.07 | −0.06 | 0.12b
| 0.08 | 0.01 |
0.06
| 0.00 | 0.00 | 0.11 | 0.07 | 0.05 | 0.09 |
functioning | Respiratory illness | −0.00 | 0.03 | 0.09 | 0.11 | 0.03 |
0.11
| 0.12 | 0.35c
| 0.16 | 0.14 | 0.08 | 0.14 |
Growth/ | General population sample | 0.28b
| 0.24c
| 0.15c
| 0.18c
| 0.09 | 0.17c
| 0.26c
| 0.18c
| 0.30c
| 0.15c
| 0.23c
| 0.02 |
development | Respiratory illness | 0.27c
| 0.30c
| 0.15 | 0.20b
| 0.05 | 0.36c
| 0.24c
| 0.22b
| 0.42c
| 0.20c
| 0.23c
| 0.24c
|
Bodily pain | General population sample | 0.47c
| 0.25c
| 0.31c
| 0.31c
| 0.25c
| 0.22c
| 0.20c
| 0.07 | 0.14b
| 0.25c
| 0.13cc
| 0.08 |
Respiratory illness | 0.34c
| 0.25c
| 0.37c
| 0.37c
| 0.14 | 0.06 | 0.28c
| 0.17 | 0.20b
| 0.20b
| 0.24c
| 0.21b
| |
Temperament/ | General population sample | 0.36c
| 0.39c
| 0.19c
| 0.29c
| 0.10c
| 0.18c
|
0.4
| 0.19c
| 0.25c
|
0.3f
|
0.40
a
| 0.16b
|
moods | Respiratory illness | 0.39c
| 0.46c
| 0.33c
| 0.43c
| 0.18b
| 0.27c
|
0.62
c
| 0.48c
| 0.42c
|
0.46
a
|
0.52
c
| 0.39c
|
General behavior | General population sample | 0.15c
| 0.10 | −0.00 | 0.16c
| −0.03 | 0.19c
|
0.53
c
| 0.12b
| 0.17c
| 0.17c
| 0.23c
| 0.08 |
Respiratory illness | 0.21b
| 0.08 | 0.13 | 0.21b
| 0.10 | 0.15 |
0.55
c
| 0.36c
| 0.23b
| 0.37c
| 0.19b
| 0.20b
| |
Getting along | General population sample | 0.28c
| 0.15c
| 0.13b
| 0.17c
| 0.02 | 0.12b
|
0.45
c
|
0.26
c
| 0.24c
| 0.23c
| 0.31c
| 0.19c
|
Respiratory illness | 0.33c
| 0.20b
| 0.32c
| 0.29c
| 0.21c
| 0.14 |
0.63
c
|
0.57
c
| 0.38c
| 0.48c
| 0.43c
| 0.21b
| |
General health | General population sample | 0.35c
| 0.25c
| 0.37c
| 0.22c
| 0.20c
| 0.15b
| 0.20c
| 0.13b
| 0.20c
| 0.18c
| 0.19c
| 0.12b
|
Respiratory illness | 0.37c
| 0.50c
| 0.33c
| 0.38c
| 0.03 | 0.37c
| 0.36c
| 0.21b
| 0.15 | 0.16 | 0.29c
| 0.33c
| |
Parental-emotional | General population sample | 0.40c
| 0.26c
| 0.14c
| 0.27c
| 0.20c
| 0.27c
| 0.35c
| 0.15b
| 0.21c
| 0.31c
| 0.28c
| 0.10b
|
Respiratory illness | 0.32c
| 0.39c
| 0.41c
| 0.43c
| 0.09 | 0.22b
| 0.50c
| 0.51c
| 0.32c
| 0.48c
| 0.43c
| 0.37c
| |
Parental-time | General population sample | 0.37c
| 0.22c
| 0.20c
| 0.25c
| 0.07 | 0.24c
| 0.30c
| 0.19c
| 0.17c
| 0.26c
| 0.23c
| 0.09 |
Respiratory illness | 0.34c
| 0.30c
| 0.34c
| 0.31c
| 0.14 | 0.24b
| 0.49c
| 0.36c
| 0.26c
| 0.40c
| 0.32c
| 0.21b
| |
Family activities | General population sample | 0.27c
| 0.32c
| 0.19c
| 0.23c
| 0.10 | 0.22c
| 0.29c
| 0.10 | 0.21c
| 0.26c
| 0.18c
| 0.15c
|
Respiratory illness | na | na | na | na | na | na | na | na | na | na | na | na | |
Family cohesion | General population sample | 0.03 | 0.14c
| 0.04 | 0.15c
| −0.02 | 0.06 | 0.15c
| 0.02 | 0.03 | 0.08 | 0.14c
| 0.01 |
Respiratory illness | 0.15 | 0.04 | 0.02 | 0.12 | 0.09 | 0.03 | 0.35c
| 0.18 | 0.01 | 0.21b
| 0.24c
| 0.12 | |
Change i. health | General population sample | −0.09 | 0.11b
| 0.11b
| 0.01 | −0.10 | 0.11 | −0.01 | −0.07 | -0.10 | 0.14c
| −0.03 | 0.07 |
Respiratory illness | 0.27c
| 0.08 | 0.39c
| 0.16 | 0.14 | 0.11 | 0.26c
| 0.14 | 0.25c
| 0.18b
| 0.11 | 0.06 |
Other data
Analysis
Feasibility
Reliability
Concurrent validity
Discriminative validity
ITQOL-scales | Number of chronic conditions per child | Number of visits to physician last year | ||||||
---|---|---|---|---|---|---|---|---|
0 n = 240 mean (SD) | ≥ 2 n = 57 mean (SD) | p-value (t test)a | Effect size d
b
| 0 n = 105 mean (SD) | ≥ 4 n = 67 mean (SD) | p-value (t test)a | Effect size d
b
| |
General population sample | ||||||||
Physical functioning | 98 (9) | 95(8) | 0.02 | 0.37c
| 98 (11) | 94 (13) | 0.08 | 0.27c
|
Growth and development | 88 (10) | 84 (12) | 0.04 | 0.31c
| 88 (11) | 83 (12) | 0.01 | 0.43c
|
Bodily pain | 88 (13) | 75 (20) | 0.00 | 0.63d
| 91 (11) | 73 (20) | 0.00 | 0.85e
|
Temperament/moods | 78 (10) | 73 (10) | 0.00 | 0.50d
| 80(9) | 73 (13) | 0.00 | 0.52d
|
General behavior | 73 (12) | 73 (14) | 0.71 | −0.06 | 73 (14) | 71 (12) | 0.32 | 0.18 |
Getting along | 72(9) | 70(8) | 0.25 | 0.20c
| 72 (10) | 70 (9) | 0.26 | 0.21c
|
General health | 84 (11) | 64 (15) | 0.00 | 1.30e
| 86 (11) | 64 (17) | 0.00 | 1.30e
|
Parental-emotional | 93 (10) | 87 (15) | 0.00 | 0.42c
| 95(7) | 88 (14) | 0.00 | 0.53d
|
Parental-time | 94 (10) | 89 (12) | 0.01 | 0.40c
| 95(8) | 87 (15) | 0.00 | 0.52d
|
Family activities | 88 (12) | 80 (17) | 0.00 | 0.49c
| 89(11) | 80 (17) | 0.00 | 0.53d
|
Family cohesion | 76 (19) | 75 (18) | 0.66 | 0.07 | 75 (20) | 75 (16) | 0.81 | −0.04 |
Change in health | 54 (13) | 57 (25) | 0.34 | −0.14 | 53 (14) | 60 (25) | 0.08 | −0.25c
|
0 n = 39 mean (SD) | ≥ 2 n = 49 mean (SD) | p-value (t test)a | Effect size d
b
| ≤ 3 n = 43 mean (SD) | ≥ 8 n = 39 mean (SD) | p-value (t test})a | Effect size d
b
| |
Clinical sample (respiratory illness) | ||||||||
Physical functioning | 89 (18) | 87 (14) | 0.49 | 0.18 | 86 (27) | 85 (18) | 0.81 | 0.07 |
Growth and development | 87 (12) | 77 (15) | 0.00 | 0.63d
| 87 (11) | 78 (15) | 0.00 | 0.64d
|
Bodily pain | 85 (16) | 71 (21) | 0.00 | 0.65d
| 83 (17) | 75 (20) | 0.04 | 0.42c
|
Temperament/moods | 77 (13) | 68 (13) | 0.00 | 0.69d
| 77 (12) | 67 (13) | 0.00 | 0.76d
|
General behavior | 74 (15) | 74 (14) | 0.91 | 0.03 | 76 (13) | 70 (15) | 0.08 | 0.40c
|
Getting along | 75 (10) | 71 (11) | 0.07 | 0.40c
| 75(9) | 68 (10) | 0.01 | 0.64d
|
General health | 63 (19) | 49 (18) | 0.00 | 0.77d
| 67 (15) | 43 (17) | 0.00 | 1.39e
|
Parental-emotional | 91 (11) | 82 (16) | 0.00 | 0.59d
| 90 (12) | 83 (15) | 0.00 | 0.51d
|
Parental-time | 89 (16) | 84 (22) | 0.18 | 0.26c
| 90 (15) | 80 (22) | 0.02 | 0.47c
|
Family activities | na | na | na | na | na | na | na | na |
Family cohesion | 74 (22) | 74 (22) | 0.92 | 0.02 | 74 (25) | 73 (22) | 0.74 | 0.08 |
Change in health | 71 (22) | 63 (23) | 0.11 | 0.35c
| 74 (24) | 66 (25) | 0.18 | 0.31c
|
ITQOL-scales | Subgroup with asthma (of clinical sample) vs. gender/age matched subgroup without asthma (of general population sample) | |||
---|---|---|---|---|
General population subgroup n = 188 mean (SD) | Asthma subgroup n = 94 mean (SD) | p-value (t test)a | Effect size d
b
| |
Subgroup of the clinical sample (with asthma) vs. subgroup of the general population sample (no asthma) | ||||
Physical functioning | 98 (9) | 83 (23) | 0.00 | 0.63d
|
Growth and development | 86 (11) | 82 (14) | 0.01 | 0.32c
|
Bodily pain | 85 (15) | 77 (18) | 0.00 | 0.47c
|
Temperament/moods | 77 (11) | 71 (13) | 0.00 | 0.50d
|
General behavior | 72 (13) | 72 (14) | 0.95 | 0.01 |
Getting along | 71(9) | 71(9) | 0.73 | 0.05 |
General health | 82 (12) | 54 (19) | 0.00 | 1.49e
|
Parental-emotional | 92 (11) | 85 (14) | 0.00 | 0.50d
|
Parental-time | 93 (12) | 83 (19) | 0.00 | 0.54d
|
Family activities | 87 (13) | na | na | na |
Family cohesion | 76 (18) | 73 (20) | 0.20 | 0.16 |
Change in health | 53 (15) | 70 (24) | 0.00 | −0.68d
|
Findings
General population sample
Variable | General population sample | Clinical sample (respiratory disease) | ||||
---|---|---|---|---|---|---|
Mean (SD) or Range | n | % of Participants | Mean (SD) or Range | n | % of Participants | |
Demographic characteristics Parents
| ||||||
Respondent age (years) | ||||||
Mean (SD) | 33.1 (7.0) | 33.9 (7.3) | ||||
Range | 21–46 | 22–46 | ||||
Respondent gender | ||||||
Women | 396 | 96.6 | 121 | 87.7 | ||
Respondent born in the Netherlands | ||||||
Yes | 403 | 98.3 | 120 | 87.0 | ||
Respondent educational level | ||||||
Elementary school | 8 | 2.0 | 4 | 2.9 | ||
Secondary education | 332 | 80.9 | 88 | 63.8 | ||
Higher education/university | 70 | 17.1 | 46 | 33.3 | ||
Respondent employment | ||||||
Employed | 223 | 54.4 | 79 | 57.2 | ||
Homemaker | 148 | 36.1 | 41 | 29.7 | ||
Unemployed/disabled | 39 | 9.5 | 18 | 13.0 | ||
Parents sharing household | ||||||
Yes | 401 | 97.8 | 121 | 87.7 | ||
Demographic characteristics Children
| ||||||
Age (months) | ||||||
Mean (SD) | 24.0 (12.3) | 34.4 (16.4) | ||||
Range | 3-46 | 5–65 | ||||
Gender | ||||||
Girls | 203 | 49.5 | 56 | 40.6 | ||
Born in the Netherlands | ||||||
Yes | 406 | 99.0 | 134 | 97.1 | ||
Respiratory disease characteristics Children
| ||||||
Parent-reported current asthma | ||||||
Yes | 82 | 20.0 | 127 | 92.0 | ||
Wheezing (≥ 1 period or attack during past 4 weeks) | ||||||
Yes | 66 | 16.1 | 49 | 35.5 | ||
Dyspnea (≥ 1 period or attack during past 4 weeks) | ||||||
Yes | 60 | 14.6 | 79 | 57.2 | ||
Use of any asthma medication during past 4 weeks | ||||||
Yes | 58 | 14.1 | 90 | 65.2 | ||
Use of inhalation steroids during past 4 weeks | ||||||
Yes | 25 | 6.1 | 76 | 55.1 | ||
Other chronic conditions Children
| ||||||
Allergies | ||||||
Yes | 26 | 6.3 | 52 | 37.7 | ||
Eczema | ||||||
Yes | 58 | 14.1 | 45 | 32.6 | ||
Problems with hearing | ||||||
Yes | 43 | 10.5 | 31 | 22.5 | ||
Problems with seeing | ||||||
Yes | 7 | 1.7 | 3 | 2.2 | ||
Frequent stomachaches | ||||||
Yes | 16 | 3.9 | 24 | 17.4 | ||
Any other parent-reported chronic condition | ||||||
Yes | 21 | 5.1 | 10 | 7.2 |
Clinical sample
ITQOL score distributions
ITQOL-scales | Population | Mean (SD) | Range | % Mina
| % Maxa
| 25th %tile | 50th %tile | 75th %tile | Cronbach's αc
| Average item-own scale correlationb
| Average item-other scale correlation | % Scaling success6
|
---|---|---|---|---|---|---|---|---|---|---|---|---|
Physical | General population sample | 97.2 (9.8) | 13–100 | 0 | 79 | 100 | 100 | 100 | 0.92 | 0.78 | 0.04 | 100% (100) |
functioning | Respiratory illness | 85.9 (21.6) | 0–100 | 2 | 28 | 85 | 93 | 100 | 0.94 | 0.81 | 0.17 | 100% (90) |
Growth and | General population sample | 86.5 (10.6) | 55–100 | 0 | 16 | 78 | 88 | 95 | 0.84 | 0.56 | 0.19 | 100% (100) |
development | Respiratory illness | 82.6 (13.3) | 50–100 | 0 | 11 | 73 | 85 | 93 | 0.82 | 0.53 | 0.21 | 99% (90) |
Bodily pain | General population sample | 83.8 (16.8) | 8–100 | 0 | 35 | 75 | 83 | 100 | 0.87 | 0.76 | 0.24 | 100% (30) |
Respiratory illness | 78.5 (18.6) | 17–100 | 0 | 23 | 75 | 83 | 92 | 0.84 | 0.71 | 0.24 | 100% (27) | |
Temperament/moods | General population sample | 77.2 (10.5) | 33–99 | 0 | 0 | 71 | 78 | 85 | 0.85 | 0.46 | 0.20 | 96% (180) |
Respiratory illness | 72.0 (12.9) | 38–100 | 0 | 2 | 65 | 74 | 81 | 0.88 | 0.54 | 0.31 | 97% (162) | |
General behavior | General population sample | 72.8 (12.7) | 29–100 | 0 | 1 | 64 | 74 | 82 | 0.82 | 0.48 | 0.18 | 100% (130) |
Respiratory illness | 73.7 (14.0) | 41–100 | 0 | 1 | 64 | 75 | 83 | 0.82 | 0.48 | 0.24 | 93% (117) | |
Getting along | General population sample | 71.4(8.8) | 32–96 | 0 | 0 | 67 | 72 | 77 | 0.73 | 0.36 | 0.17 | 94% (150) |
Respiratory illness | 72.3 (9.8) | 43–93 | 0 | 0 | 65 | 73 | 80 | 0.72 | 0.36 | 0.22 | 79% (135) | |
General health | General population sample | 79.0 (14.5) | 15–100 | 0 | 2 | 72 | 81 | 90 | 0.79 | 0.47 | 0.18 | 100% (120) |
Respiratory illness | 56.2 (19.2) | 15–100 | 0 | 1 | 42 | 55 | 70 | 0.82 | 0.51 | 0.24 | 98% (108) | |
Parental-emotional | General population sample | 92.1 (10.5) | 18–100 | 0 | 35 | 89 | 96 | 100 | 0.76 | 0.52 | 0.22 | 96% (70) |
Respiratory illness | 86.6 (13.8) | 36–100 | 0 | 17 | 82 | 89 | 96 | 0.79 | 0.55 | 0.31 | 100% (63) | |
Parental-time | General population sample | 93.0(11.0) | 29–100 | 0 | 49 | 91 | 95 | 100 | 0.76 | 0.53 | 0.21 | 99% (70) |
Respiratory illness | 86.8 (17.7) | 10–100 | 0 | 41 | 81 | 95 | 100 | 0.83 | 0.62 | 0.28 | 100% (63) | |
Family activities | General population sample | 86.2(13.5) | 25–100 | 0 | 24 | 79 | 88 | 96 | 0.79 | 0.55 | 0.23 | 100% (60) |
Respiratory illness | na | na | na | na | na | na | na | na | na | na | na | |
Family cohesion | General population sample | 75.3 (18.8) | 0–100 | 1 | 21 | 60 | 85 | 85 | na | na | 0.15 | na |
Respiratory illness | 72.9 (21.2) | 0–100 | 1 | 23 | 60 | 60 | 85 | na | na | 0.24 | na | |
Change in healthd
| General population sample | 56.1 (18.4) | 0–100 | 1 | 11 | 50 | 50 | 50 | na | na | 0.03 | na |
Respiratory illness | 70.9 (23.8) | 25–100 | 0 | 31 | 50 | 75 | 100 | na | na | 0.16 | na |
Internal consistency of ITQOL-scales
Test-retest reliability
ITQOL-scales (test-retest) | Population | Test n = 115/114 mean (SD) | Retest n = 115/114 mean (SD) | p-value (Paired-samples t test)a | Effect size (d)b
| Intra class correlation coeflicients |
---|---|---|---|---|---|---|
Physical functioning | General population sample | 97 (11) | 97 (12) | 0.36 | −0.02 | 0.69c
|
Respiratory illness | 87 (20) | 92 (16) | 0.00 | 0.22d
| 0.68c
| |
Growth and development | General population sample | 86 (11) | 84 (11) | 0.01 | −0.20d
| 0.67c
|
Respiratory illness | 82 (14) | 81 (12) | 0.90 | −0.01 | 0.77c
| |
Bodily pain | General population sample | 82 (18) | 84 (17) | 0.35 | 0.10 | 0.42c
|
Respiratory illness | 79 (19) | 78 (18) | 0.50 | −0.08 | 0.35c
| |
Temperament and moods | General population sample | 76 (13) | 78 (12) | 0.21 | 0.11 | 0.58c
|
Respiratory illness | 72 (12) | 74 (12) | 0.09 | 0.14 | 0.68c
| |
General behavior | General population sample | 71 (14) | 72 (13) | 0.21 | 0.09 | 0.82c
|
Respiratory illness | 73 (14) | 72 (16) | 0.44 | −0.05 | 0.78c
| |
Getting along | General population sample | 71 (9) | 72 (9) | 0.19 | 0.11 | 0.74c
|
Respiratory illness | 72 (10) | 72 (11) | 0.87 | 0.03 | 0.80c
| |
General health | General population sample | 79 (14) | 80 (14) | 0.17 | 0.09 | 0.77c
|
Respiratory illness | 56 (19) | 57 (18) | 0.13 | 0.09 | 0.80c
| |
Parental-emotional | General population sample | 92 (11) | 93 (9) | 0.08 | 0.12 | 0.62c
|
Respiratory illness | 87 (13) | 88 (12) | 0.25 | 0.10 | 0.59c
| |
Parental-time | General population sample | 92 (14) | 92 (12) | 0.69 | 0.03 | 0.50c
|
Respiratory illness | 88 (16) | 87 (16) | 0.46 | −0.04 | 0.57c
| |
Family activities | General population sample | 85 (15) | 87 (14) | 0.24 | 0.10 | 0.56c
|
Respiratory illness | na | na | na | na | na | |
Family cohesion | General population sample | 77 (18) | 76 (18) | 0.59 | −0.04 | 0.71c
|
Respiratory illness | 73 (21) | 76 (20) | 0.18 | 0.14 | 0.55c
| |
Change in healthe
| General population sample | 54 (18) | 54 (17) | 0.91 | 0.01 | 0.01 |
Respiratory illness | 70 (24) | 71 (23) | 0.63 | 0.03 | 0.65c
|