Background
Methods
Participants and Settings
Instrument
PedsQL™ Family Impact Module
PedsQL™ Family Information Form
Cross-cultural adaptation
Data collection
Statistical analysis
Results
Sample Characteristics, Response Rate and Feasibility
Demographic Characteristics | Parents of Asthma children (N = 136) | Parents of Heart Disease Children (N = 264) | ||
---|---|---|---|---|
N
|
%
|
N
|
%
| |
Characteristics of Parents
| ||||
Relationship to Patient
| ||||
Father | 18 | 13.24 | 97 | 36.74 |
Mother | 105 | 77.21 | 156 | 59.09 |
Grandfather | 0 | 0.00 | 5 | 1.89 |
Grandmother | 12 | 8.82 | 3 | 1.14 |
Others | 1 | 0.74 | 3 | 1.14 |
Level of Family Income
| ||||
High | 1 | 0.74 | 0 | 0.00 |
Intermediate high | 17 | 12.50 | 8 | 3.03 |
Intermediate mid | 92 | 67.65 | 104 | 39.39 |
Intermediate low | 22 | 16.18 | 84 | 31.82 |
Low | 4 | 2.94 | 68 | 25.76 |
Method of Payment for the Child's Medical Care
| ||||
Free medical service | 14 | 10.29 | 6 | 2.27 |
Medical insurance | 43 | 31.62 | 52 | 19.70 |
Rural cooperative medical service | 3 | 2.21 | 89 | 33.71 |
Self-paying | 75 | 55.15 | 114 | 43.18 |
Others | 1 | 0.74 | 3 | 1.14 |
Characteristics of Children
| ||||
Ages (years)
| ||||
2~4 | 59 | 43.38 | 116 | 43.94 |
5~7 | 42 | 30.88 | 61 | 23.11 |
8~2 | 31 | 22.79 | 43 | 16.29 |
13~18 | 4 | 2.94 | 44 | 16.67 |
Gender
| ||||
Male | 93 | 68.38 | 150 | 56.82 |
Female | 43 | 31.62 | 114 | 43.18 |
Groups
| ||||
Inpatient | 1 | 0.74 | 207 | 78.41 |
Outpatient | 135 | 99.26 | 57 | 21.59 |
Disease Duration (years)
| ||||
<2 | 51 | 37.50 | 74 | 28.03 |
2~ | 54 | 39.71 | 82 | 31.06 |
≥4 | 31 | 22.79 | 108 | 40.91 |
Disease Status
| ||||
Mild | 91 | 66.91 | 156 | 59.09 |
Moderate | 35 | 25.74 | 66 | 25.00 |
Severe | 6 | 4.41 | 42 | 15.91 |
Not reported | 4 | 2.94 | 0 | 0.00 |
Cross-cultural adaptation
Modes of administration
Subscale response descriptives
Parents of Asthma children | Parents of Heart Disease Children |
Z
|
p
| |||||
---|---|---|---|---|---|---|---|---|
Scale
|
N
|
Median (Q
L
,Q
U
)
|
%Floor/%Ceiling
|
N
|
Median (Q
L
,Q
U
)
|
%Floor/%Ceiling
| ||
Total Score
| 136 | 79.17 (65.28, 89.58) | 2.66/50.76 | 264 | 71.88 (57.12, 86.81) | 3.45/37.71 | -2.757 | 0.006 |
Parent HRQOL Summary Score
| 136 | 78.13 (64.06, 92.50) | 1.95/48.79 | 264 | 73.75 (57.81, 88.75) | 2.44/38.66 | -1.661 | 0.097 |
Physical Functioning | 136 | 75.00 (58.33, 94.79) | 2.08/44.49 | 264 | 75.00 (58.33, 91.67) | 2.02/38.26 | -0.626 | 0.531 |
Emotional Functioning | 136 | 80.00 (60.00, 95.00) | 1.62/48.53 | 264 | 75.00 (55.00, 90.00) | 2.80/37.88 | -2.409 | 0.016 |
Social Functioning | 136 | 81.25 (62.50, 100.00) | 3.86/55.14 | 264 | 75.00 (56.25, 93.75) | 4.37/39.77 | -2.594 | 0.009 |
Cognitive Functioning | 136 | 80.00 (60.00, 100.00) | 0.59/49.12 | 264 | 75.00 (60.00, 95.00) | 1.06/39.02 | -0.926 | 0.355 |
Communication | 136 | 100.00 (75.00, 100.00) | 0.26/69.36 | 264 | 75.00 (58.33, 100.00) | 2.78/41.29 | -5.897 | <0.001 |
Worry | 136 | 70.00 (46.25, 83.75) | 8.09/39.85 | 264 | 60.00 (45.00, 78.75) | 9.32/25.68 | -2.767 | 0.006 |
Family Functioning Summary Score
| 136 | 82.81 (71.88, 93.75) | 1.93/55.51 | 264 | 75.00 (59.38, 93.75) | 2.56/41.52 | -2.536 | 0.011 |
Daily Activities | 136 | 66.67 (50.00, 83.33) | 4.41/39.71 | 264 | 66.67 (50.00, 91.67) | 3.28/31.94 | -0.466 | 0.641 |
Family Relationships | 136 | 95.00 (75.00, 100.00) | 0.44/65.00 | 264 | 80.00 (65.00, 100.00) | 2.12/47.27 | -3.498 | <0.001 |
Internal consistency reliability
Scale | Total | Parents of Asthma children | Parents of Heart Disease Children |
---|---|---|---|
Total Score
| 0.97 | 0.96 | 0.97 |
Parent HRQOL Summary Score
| 0.95 | 0.94 | 0.96 |
Physical Functioning | 0.89 | 0.88 | 0.89 |
Emotional Functioning | 0.89 | 0.90 | 0.89 |
Social Functioning | 0.83 | 0.76 | 0.85 |
Cognitive Functioning | 0.90 | 0.87 | 0.92 |
Communication | 0.83 | 0.80 | 0.82 |
Worry | 0.84 | 0.79 | 0.87 |
Family Functioning Summary Score
| 0.89 | 0.86 | 0.90 |
Daily Activities | 0.80 | 0.63 | 0.87 |
Family Relationships | 0.93 | 0.92 | 0.93 |
Item-subscale correlations
Scale | Physical Functioning | Emotional Functioning | Social Functioning | Cognitive Functioning | Communication | Worry | Daily Activities | Family Relationships |
---|---|---|---|---|---|---|---|---|
Physical Functioning
| ||||||||
...feel tired during the day |
0.811
| 0.436 | 0.595 | 0.363 | 0.293 | 0.417 | 0.371 | 0.259 |
0.840
|
0.626
|
0.680
|
0.590
|
0.572
|
0.526
|
0.535
|
0.431
| |
...feel tired when I wake up in the morning |
0.856
| 0.511 | 0.594 | 0.536 | 0.382 | 0.470 | 0.424 | 0.420 |
0.842
|
0.573
|
0.620
|
0.583
|
0.485
|
0.487
|
0.546
|
0.365
| |
...feel too tired to do the things I like to do |
0.817
| 0.578 | 0.639 | 0.506 | 0.427 | 0.429 | 0.389 | 0.424 |
0.872
|
0.681
|
0.686
|
0.639
|
0.616
|
0.538
|
0.600
|
0.496
| |
...get headaches |
0.730
| 0.584 | 0.473 | 0.452 | 0.494 | 0.455 | 0.433 | 0.475 |
0.825
|
0.643
|
0.650
|
0.601
|
0.542
|
0.460
|
0.473
|
0.419
| |
...feel physically weak |
0.834
| 0.570 | 0.579 | 0.546 | 0.478 | 0.480 | 0.421 | 0.438 |
0.847
|
0.648
|
0.648
|
0.598
|
0.544
|
0.488
|
0.549
|
0.494
| |
...feel sick to my stomach |
0.610
| 0.506 | 0.433 | 0.456 | 0.513 | 0.295 | 0.388 | 0.465 |
0.602
|
0.523
|
0.467
|
0.535
|
0.482
|
0.419
|
0.490
|
0.497
| |
Emotional Functioning
| ||||||||
...feel anxious | 0.626 |
0.828
| 0.528 | 0.573 | 0.474 | 0.509 | 0.484 | 0.476 |
0.670
|
0.792
|
0.634
|
0.581
|
0.570
|
0.476
|
0.522
|
0.449
| |
...feel sad | 0.565 |
0.880
| 0.560 | 0.526 | 0.607 | 0.536 | 0.420 | 0.557 |
0.624
|
0.869
|
0.582
|
0.554
|
0.603
|
0.540
|
0.528
|
0.464
| |
...feel angry | 0.466 |
0.819
| 0.523 | 0.517 | 0.529 | 0.455 | 0.393 | 0.490 |
0.524
|
0.743
|
0.459
|
0.498
|
0.455
|
0.406
|
0.408
|
0.368
| |
...feel frustrated | 0.550 |
0.811
| 0.532 | 0.524 | 0.564 | 0.555 | 0.391 | 0.450 |
0.646
|
0.886
|
0.648
|
0.671
|
0.658
|
0.585
|
0.573
|
0.475
| |
...feel helpless or hopeless | 0.528 |
0.823
| 0.574 | 0.554 | 0.610 | 0.587 | 0.448 | 0.554 |
0.679
|
0.842
|
0.713
|
0.691
|
0.671
|
0.559
|
0.596
|
0.521
| |
Social Functioning
| ||||||||
...feel isolated from others | 0.533 | 0.598 |
0.636
| 0.548 | 0.684 | 0.515 | 0.447 | 0.528 |
0.624
|
0.708
|
0.740
|
0.659
|
0.669
|
0.464
|
0.568
|
0.545
| |
...trouble getting support from others | 0.552 | 0.595 |
0.753
| 0.547 | 0.619 | 0.460 | 0.475 | 0.510 |
0.635
|
0.574
|
0.788
|
0.586
|
0.542
|
0.376
|
0.520
|
0.431
| |
...hard to find time for social activities | 0.517 | 0.404 |
0.832
| 0.444 | 0.311 | 0.407 | 0.492 | 0.266 |
0.627
|
0.548
|
0.880
|
0.612
|
0.525
|
0.449
|
0.594
|
0.380
| |
...enough energy for social activities | 0.605 | 0.537 |
0.826
| 0.466 | 0.526 | 0.535 | 0.469 | 0.421 |
0.712
|
0.647
|
0.894
|
0.667
|
0.608
|
0.520
|
0.651
|
0.508
| |
Cognitive Functioning
| ||||||||
...hard to keep my attention on things | 0.625 | 0.575 | 0.610 |
0.753
| 0.472 | 0.513 | 0.443 | 0.407 |
0.703
|
0.637
|
0.728
|
0.851
|
0.599
|
0.529
|
0.613
|
0.499
| |
...hard to remember what people tell me | 0.390 | 0.489 | 0.431 |
0.819
| 0.352 | 0.280 | 0.254 | 0.202 |
0.609
|
0.616
|
0.607
|
0.884
|
0.563
|
0.459
|
0.542
|
0.548
| |
...hard to remember what I just heard | 0.391 | 0.445 | 0.421 |
0.817
| 0.409 | 0.288 | 0.312 | 0.274 |
0.627
|
0.620
|
0.654
|
0.897
|
0.601
|
0.447
|
0.589
|
0.471
| |
...hard to think quickly | 0.542 | 0.529 | 0.520 |
0.829
| 0.385 | 0.388 | 0.372 | 0.365 |
0.619
|
0.648
|
0.656
|
0.875
|
0.653
|
0.511
|
0.623
|
0.557
| |
...trouble remembering what I was just thinking | 0.511 | 0.564 | 0.492 |
0.815
| 0.471 | 0.416 | 0.326 | 0.376 |
0.604
|
0.598
|
0.601
|
0.850
|
0.594
|
0.456
|
0.586
|
0.501
| |
Communication
| ||||||||
...others do not understand my family's situation | 0.462 | 0.566 | 0.529 | 0.504 |
0.890
| 0.485 | 0.455 | 0.566 |
0.615
|
0.639
|
0.665
|
0.691
|
0.863
|
0.564
|
0.589
|
0.604
| |
...hard to talk about my child's health with others | 0.442 | 0.534 | 0.495 | 0.413 |
0.828
| 0.530 | 0.457 | 0.574 |
0.553
|
0.604
|
0.559
|
0.531
|
0.867
|
0.528
|
0.494
|
0.488
| |
...hard to tell doctors and nurses how I feel | 0.371 | 0.497 | 0.484 | 0.480 |
0.725
| 0.507 | 0.337 | 0.535 |
0.572
|
0.597
|
0.565
|
0.598
|
0.848
|
0.534
|
0.550
|
0.590
| |
Worry
| ||||||||
...my child's medical treatments are working | 0.484 | 0.464 | 0.493 | 0.392 | 0.421 |
0.817
| 0.406 | 0.345 |
0.524
|
0.529
|
0.452
|
0.497
|
0.500
|
0.842
|
0.437
|
0.305
| |
...side effects of my child's medical treatments | 0.349 | 0.415 | 0.391 | 0.282 | 0.321 |
0.782
| 0.376 | 0.318 |
0.506
|
0.491
|
0.429
|
0.463
|
0.469
|
0.863
|
0.501
|
0.335
| |
...how others will react to my child's condition | 0.346 | 0.512 | 0.393 | 0.312 | 0.568 |
0.652
| 0.471 | 0.507 |
0.462
|
0.495
|
0.427
|
0.424
|
0.574
|
0.790
|
0.506
|
0.352
| |
...my child's illness affects other family members | 0.419 | 0.489 | 0.462 | 0.423 | 0.581 |
0.601
| 0.434 | 0.479 |
0.524
|
0.509
|
0.503
|
0.527
|
0.545
|
0.717
|
0.593
|
0.437
| |
...my child's future | 0.383 | 0.436 | 0.425 | 0.375 | 0.461 |
0.785
| 0.443 | 0.379 |
0.431
|
0.486
|
0.408
|
0.394
|
0.464
|
0.787
|
0.516
|
0.318
| |
Daily Activities
| ||||||||
...Family activities taking more time and effort | 0.309 | 0.295 | 0.375 | 0.222 | 0.336 | 0.401 |
0.727
| 0.313 |
0.539
|
0.533
|
0.596
|
0.573
|
0.545
|
0.642
|
0.864
|
0.437
| |
...Difficulty finding time to finish household tasks | 0.390 | 0.418 | 0.426 | 0.303 | 0.425 | 0.450 |
0.777
| 0.356 |
0.584
|
0.568
|
0.644
|
0.605
|
0.566
|
0.517
|
0.914
|
0.508
| |
...Feeling too tired to finish household tasks | 0.502 | 0.521 | 0.586 | 0.472 | 0.451 | 0.509 |
0.782
| 0.428 |
0.629
|
0.600
|
0.648
|
0.640
|
0.561
|
0.505
|
0.901
|
0.529
| |
Family Relationships
| ||||||||
...Lack of communication between family members | 0.480 | 0.560 | 0.471 | 0.381 | 0.612 | 0.502 | 0.468 |
0.867
|
0.506
|
0.509
|
0.487
|
0.539
|
0.545
|
0.373
|
0.533
|
0.872
| |
...Conflicts between family members | 0.409 | 0.553 | 0.402 | 0.347 | 0.604 | 0.413 | 0.351 |
0.885
|
0.432
|
0.422
|
0.451
|
0.477
|
0.504
|
0.374
|
0.443
|
0.881
| |
...Difficulty making decisions together as a family | 0.483 | 0.518 | 0.453 | 0.361 | 0.605 | 0.472 | 0.421 |
0.837
|
0.484
|
0.507
|
0.517
|
0.565
|
0.592
|
0.413
|
0.526
|
0.892
| |
...Difficulty solving family problems together | 0.512 | 0.577 | 0.479 | 0.443 | 0.622 | 0.499 | 0.440 |
0.828
|
0.489
|
0.489
|
0.475
|
0.547
|
0.592
|
0.377
|
0.528
|
0.893
| |
...Stress or tension between family members | 0.437 | 0.442 | 0.466 | 0.329 | 0.530 | 0.453 | 0.395 |
0.816
|
0.464
|
0.491
|
0.463
|
0.490
|
0.589
|
0.402
|
0.444
|
0.867
|
Construct validity
Scale | Inpatient Sample | Outpatient Sample |
Z
|
p
| ||
---|---|---|---|---|---|---|
N
|
Median (Q
L
,Q
U
)
|
N
|
Median (Q
L
,Q
U
)
| |||
Total Score
| 207 | 68.75 (54.86, 86.11) | 57 | 76.39 (65.28, 91.32) | -2.880 | 0.004 |
Parent HRQOL Summary Score
| 207 | 71.25 (55.00, 88.75) | 57 | 78.75 (67.50, 93.13) | -2.549 | 0.011 |
Physical Functioning | 207 | 70.83 (54.17, 91.67) | 57 | 75.00 (66.67, 91.67) | -2.355 | 0.019 |
Emotional Functioning | 207 | 70.00 (55.00, 90.00) | 57 | 75.00 (65.00, 95.00) | -2.023 | 0.043 |
Social Functioning | 207 | 75.00 (50.00, 87.50) | 57 | 75.00 (62.50, 100.00) | -2.183 | 0.029 |
Cognitive Functioning | 207 | 75.00 (55.00, 95.00) | 57 | 80.00 (75.00, 100.00) | -2.455 | 0.014 |
Communication | 207 | 75.00 (58.33, 100.00) | 57 | 83.33 (70.83, 100.00) | -2.542 | 0.011 |
Worry | 207 | 55.00 (40.00, 75.00) | 57 | 70.00 (52.50, 85.00) | -2.744 | 0.006 |
Family Functioning Summary Score
| 207 | 71.88 (56.25, 93.75) | 57 | 84.38 (68.75, 95.31) | -2.723 | 0.006 |
Daily Activities | 207 | 66.67 (50.00, 83.33) | 57 | 75.00 (58.33, 95.83) | -1.800 | 0.072 |
Family Relationships | 207 | 75.00 (60.00, 100.00) | 57 | 95.00 (75.00, 100.00) | -2.924 | 0.003 |
Samples | χ² | df | χ²/df | RMSEA (95%CI) | CFI | NNFI | AGFI |
---|---|---|---|---|---|---|---|
Parents of Asthma children
| 1181.59 | 566 | 2.09 | 0.086 (0.079~0.094) | 0.96 | 0.95 | 0.63 |
Parents of Heart Disease Children
| 1532.33 | 566 | 2.71 | 0.083 (0.078~0.088) | 0.97 | 0.97 | 0.70 |