Background
Method
Participants and study design
Measures
Cerebral palsy quality of life – teens (CPQoL-Teens)
Bengali version Kidscreen-27
Bengali version strengths and difficulties questionnaire (SDQ)
Bangladesh cerebral palsy register (BCPR)
Cross-cultural translation and adaptation of CPQoL-teens
Statistical analysis
Results
Participant characteristics
Feasibility
Instrument dimension | Items | Adolescent with CP | ||||
---|---|---|---|---|---|---|
n
| Missing scores n(%) | Floor effect n(%) | Ceiling effect n(%) | Cronbach’s α | ||
Self-report | ||||||
General wellbeing and participation | 21 |
64
| 0(0.0) | 0(0.0) | 0(0.0) | 0.92 |
Communication and physical health | 16 |
64
| 0(0.0) | 0(0.0) | 0(0.0) | 0.85 |
School wellbeing | 8 |
64
| 31(48.4) | 0(0.0) | 3(4.7) | 0.89 |
Social wellbeing | 7 |
64
| 0(0.0) | 0(0.0) | 2(3.1) | 0.77 |
Feelings about functioning | 5 |
64
| 0(0.0) | 1(1.6) | 2(3.1) | 0.87 |
Proxy-report | ||||||
General wellbeing and participation | 21 |
154
| 0(0.0) | 0(0.0) | 0(0.0) | 0.94 |
Communication and physical health | 16 |
154
| 0(0.0) | 2(1.3) | 0(0.0) | 0.88 |
School wellbeing | 8 |
154
| 115(74.7) | 0(0.0) | 1(0.7) | 0.91 |
Social wellbeing | 7 |
154
| 0(0.0) | 2(1.3) | 1(0.7) | 0.82 |
Access to services | 9 |
154
| 0(0.0) | 1(0.7) | 2(1.3) | 0.88 |
Family health | 4 |
154
| 0(0.0) | 5(3.3) | 2(1.3) | 0.79 |
Feelings about functioning | 5 |
154
| 0(0.0) | 21(13.6) | 2(1.3) | 0.88 |
Sensitivity
Internal consistency
Validity
Content validity
Factor 1 | Factor 2 | Factor 3 | Factor 4 | Factor 5 | |
---|---|---|---|---|---|
General wellbeing and participation | |||||
1. their ability to participate in leisure and recreational activities? |
0.77
| ||||
2. their ability to participate in the community? |
0.77
| ||||
3. their ability to participate in social events outside of school? |
0.76
| ||||
4. having a go and trying new things? |
0.74
| −0.31 | |||
5. succeeding in things they want to be good at? |
0.72
| ||||
6. their positive attitude? |
0.71
| ||||
7. their ability to participate in sporting activities? |
0.70
| ||||
8. doing things they want to do? |
0.69
| ||||
9. their ability to get around in their neighbourhood? |
0.69
| ||||
10. themselves? |
0.69
| ||||
11. they way their are accepted by other teenagers outside of school? |
0.68
| ||||
12. their ability to get from place to place? |
0.66
| 0.31 | |||
13. hanging out with friends? |
0.65
| ||||
14. they way they get along with other teenagers outside of school (not school friends)? |
0.64
| ||||
15. their opportunities in life? |
0.64
| ||||
16. their future? |
0.58
| ||||
17. quality of life? |
0.56
| 0.43 | 0.33 | ||
18. life as a whole? | 0.52 |
0.52
| 0.31 | ||
19. the way they get around? |
0.52
| 0.32 | |||
20. life in general? |
0.48
| 0.45 | 0.33 | ||
21. hanging out on their own? |
0.48
| 0.38 | |||
Communication and physical health | |||||
22. their ability to communicate with people they know well? |
0.75
| ||||
23. being able to do things by themselves without relying on others? |
0.72
| ||||
24. the way other people communicate with them? |
0.72
| ||||
25. the way they get along with adults? |
0.67
| −0.34 | |||
26. what they have achieved in their life? |
0.66
| ||||
27. their physical health? |
0.62
| 0.33 | |||
28. the way they are accepted by adults? |
0.62
| ||||
29. their plans for the future? |
0.59
| ||||
30. changes happening to their body to do with puberty? |
0.58
| ||||
31. their overall health? |
0.57
| 0.34 | |||
32. the way they are accepted by people in general? |
0.56
| 0.34 | |||
33. their ability to communicate with people they do not know well? |
0.56
| ||||
34. how they sleep? |
0.47
| ||||
35. what may happen to them later in life? |
0.44
| ||||
36. the way their communicate with people using technology (SMS, internet)? |
0.41
| ||||
37. their ability to keep up academically? |
0.59
| ||||
School wellbeing | |||||
38. the way they are treated the same as everyone as at school? |
0.84
| ||||
39. their ability to keep up physically? |
0.77
| ||||
40. their ability to participate at school? |
0.77
| ||||
41. the way they get along with their teachers at school? |
0.75
| ||||
42. the way they get along with other teenagers at school? |
0.74
| ||||
43. the way they are included by other students at school? |
0.74
| ||||
44. the way they are accepted by other students at school? |
0.72
| ||||
45. the way they are accepted by staff and teachers at school? |
0.66
| ||||
Social wellbeing | |||||
46. the way they get along with you (parents)? |
0.70
| ||||
47. the way they get along with people generally? |
0.62
| ||||
48. how happy they are? |
0.57
| 0.34 | 0.30 | ||
49. going out on trips with the family? |
0.57
| 0.38 | |||
50. the way they get along with their brothers and sisters? |
0.55
| ||||
51. the support they get from their family? |
0.43
| −0.34 | 0.31 | ||
52. the way they are accepted by their family? |
0.42
| 0.33 | |||
Access to services | |||||
53. your teenagers access to treatment? | 0.53 | 0.31 |
−0.55
| ||
54. your teenagers access to community services and facilities? |
0.49
| 0.34 | −0.34 | ||
55. your teenagers access to speech therapy? | 0.45 |
−0.69
| |||
56. ability to get advice from a paediatrician? | 0.45 | 0.35 |
−0.63
| ||
57. your teenagers access to specialised medical or surgical care? | 0.43 | 0.41 |
−0.65
| ||
58. your teenagers access to physiotherapy? | 0.43 | 0.34 |
−0.69
| ||
59. your teenagers access to occupational therapy? | 0.42 | 0.34 |
−0.69
| ||
60. your teenagers access to extra help with learning at school? |
0.70
| ||||
61. How much pain does your teenager have? |
0.26
| ||||
Family health | |||||
62. How happy are you? | 0.41 |
0.45
| |||
63. Your family’s financial situation? |
0.41
| 0.32 | |||
64. Your work situation? | 0.31 | −0.36 |
0.57
| ||
65. Your physical health? | −0.31 |
0.54
| |||
Feelings about functioning | |||||
66. their ability to dress him/herself? |
0.63
| ||||
67. their ability to eat or drink independently? |
0.60
| ||||
68. the way they use their arms and hands? |
0.59
| ||||
69. their ability to use the toilet by themself? |
0.58
| 0.33 | |||
70. the way they use their legs? | 0.44 |
0.46
| −0.31 | ||
Eigenvalue |
20.47
|
7.06
|
4.52
|
3.53
|
2.74
|
Percent variance |
29.25%
|
10.08%
|
6.46%
|
5.05%
|
3.91%
|
Concurrent validity
CPQoL-Teens | Kidscreen-27 | |||||
---|---|---|---|---|---|---|
Total score | Physical wellbeing | Psych wellbeing | Autonomy parents | Peers social | School wellbeing | |
Self-report | ||||||
General wellbeing and participation | .495** | .556** | .532** | .390** | .346** | .460** |
Communication and physical health | .505** | .553** | .459** | .465** | .370** | .659** |
School wellbeinga | .693** | .663** | .458** | .545** | .490** | .563** |
Social wellbeing | .257* | .374** | .378** | .367** | .171 | .377* |
Feelings about functioning | .485** | .537** | .598** | .313* | .540** | .319 |
Proxy-report | ||||||
General wellbeing and participation | .648** | .555** | .568** | .474** | .544** | .352* |
Communication and physical health | .603** | .476** | .513** | .439** | .555** | .425** |
School wellbeingb | .225 | .365* | .062 | .043 | .216 | .327* |
Social wellbeing | .479** | .389** | .477** | .366** | .357** | .054 |
Feelings about functioning | .529** | .598** | .447** | .295** | .467** | .391* |
Access to services | .226** | .171* | .137 | .099 | .173* | .106 |
Family health | .269** | .257** | .391** | .120 | .243** | .082 |
Construct validity
Instrument dimension | SDQ ‘unlikely’ to ‘possible’ mean difference (95% CI) | SDQ ‘unlikely’ to ‘probable’ mean difference (95% CI) | SDQ ‘possible’ to ‘probable’ mean difference (95% CI) | Effect size (ES) |
---|---|---|---|---|
General wellbeing and participation | 11.3 (−2.1 to 24.7) | 9.1 (−1.9 to 20.2) | 2.2 (−8.3 to 12.6) | 0.03 |
Communication and physical health | 13.4* (2.2 to 24.5) | 9.7* (0.6 to 18.9) | 3.6 (−5.0 to 12.3) | 0.06 |
School wellbeing a | 8.8 (−16.2 to 33.7) | 1.1 (− 16.0 to 18.3) | 7.6 (−14.8 to 30.0) | 0.02 |
Social wellbeing | 11.7 (−0.7 to 24.1) | 8.1 (−2.2 to 18.3) | 3.7 (−6.0 to 13.3) | 0.03 |
Access to services | 2.1 (−13.8 to 18.1) | 4.5 (−8.7 to 17.6) | 6.6 (−5.8 to 19.0) | 0.01 |
Family health | 8.6 (−6.1 to 23.2) | 9.2 (−2.9 to 21.3) | 0.6 (−10.8 to 12.0) | 0.02 |
Feelings about functioning | 17.8* (0.7 to 35.0) | 7.6 (−6.6 to 21.7) | 10.3 (−3.1 to 23.6) | 0.04 |
Concordance between self- and proxy-report
Instrument Dimension | ICC (95% CI) | Mean difference (95% CI) | p-value |
---|---|---|---|
General wellbeing and participation | 0.8 (0.7 to 0.9) | 6.5 (3.3 to 9.6) |
< 0.0001
b
|
Communication and physical health | 0.8 (0.6 to 0.9) | 6.7 (3.6 to 9.7) |
< 0.0001
b
|
School wellbeing a | 0.9 (0.7 to 0.9) | 7.7 (4.2 to 11.3) |
< 0.0001
b
|
Social wellbeing | 0.5 (0.2 to 0.7) | 7.0 (3.1 to 10.9) |
0.001
c
|
Feelings about functioning | 0.7 (0.4 to 0.8) | 6.3 (0.2 to 12.4) |
0.021
c
|