Tabla I. Estadísticos descriptivos de cada valoración y dimensión del módulo neuromuscular de la escala Pediatric Quality of Life Inventory para niños de 5-7 años y sus padres. |
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Niños |
Padres |
||||||
Valoración |
Media ± DE |
IC 95% |
Mediana |
Media ± DE |
IC 95% |
Mediana |
|
Sobre enfermedad neuromuscular |
Primera |
69,83 ± 13,62 |
64,44-75,21 |
68 |
70,38 ± 17,68 |
64,4-76,36 |
72,06 |
Segunda |
66,34 ± 14,04 |
60,78-71,89 |
71 |
69,12 ± 17,57 |
63,17-75,06 |
73,53 |
|
Comunicación |
Primera |
– |
– |
– |
63,43 ± 31,26 |
52,85-74,00 |
66,67 |
Segunda |
– |
– |
– |
62,96 ± 30,04 |
52,80-73,13 |
70,84 |
|
Sobre nuestros recursos familiares |
Primera |
– |
– |
– |
70,28 ± 20,32 |
63,40-77,15 |
75 |
Segunda |
– |
– |
– |
69,44 ± 20,63 |
62,47-76,42 |
72,50 |
|
Puntuación total |
Primera |
– |
– |
– |
65,97 ± 15,68 |
60,67-71,28 |
68 |
Segunda |
– |
– |
– |
65,00 ± 15,17 |
59,87-70,13 |
68,50 |
|
DE: desviación estándar; IC 95%: intervalo de confianza al 95%. |
Tabla II. Consistencia interna y fiabilidad intraobservador del módulo neuromuscular de la escala Pediatric Quality of Life Inventory para niños de 5-7 años y sus padres |
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Niños |
Padres |
|||||
α de Cronbach a |
ICC |
ICC IC 95% |
α de Cronbach a |
ICC |
ICC IC 95% |
|
Sobre enfermedad neuromuscular |
0,887 |
0,796 |
0,602-0,902 |
0,953 |
0,91 |
0,832-0,960 |
Comunicación |
– |
– |
– |
0,934 |
0,876 |
0,770-0,945 |
Sobre nuestros recursos familiares |
– |
– |
– |
0,905 |
0,827 |
0,687-0,918 |
Puntuación total |
– |
– |
– |
0,957 |
0,918 |
0,846-0,959 |
IC 95%: intervalo de confianza al 95%; ICC: coeficiente de concordancia intraobservador. a Coeficiente a de Cronbach para la consistencia interna. |
Figura. Gráficos de Bland y Altman de la fiabilidad del módulo neuromuscular de la escala Pediatric Quality of Life Inventory para niños de 5-7 años y sus padres.
Tabla III. Estructura factorial, distribución de los ítems y su porcentaje de aportación en las dimensiones configuradas en análisis factorial exploratorio. |
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Padres |
Niños |
||||||||||||
Ítem |
Dim. 1 |
Dim. 2 |
Dim. 3 |
Dim. 4 |
Dim. 5 |
Ítem |
Dim. 1 |
Dim. 2 |
Dim. 3 |
Dim. 4 |
|||
SEN |
Ítem 1 |
61,61 |
37,54 |
–1,81 |
–8,56 |
–5,11 |
SEN |
Ítem 1 |
62,76 |
10,8 |
–34,52 |
–17,84 |
|
SEN |
Ítem 6 |
60,7 |
–16,95 |
–25,8 |
9,88 |
–40,6 |
SEN |
Ítem 9 |
72,67 |
12,46 |
1,19 |
4,54 |
|
SEN |
Ítem 8 |
84,89 |
–18 |
1,53 |
–8,95 |
4,25 |
SEN |
Ítem 10 |
72,79 |
31,44 |
13,4 |
–6,01 |
|
SEN |
Ítem 9 |
65,87 |
–11,13 |
–27,4 |
–34,92 |
–21,15 |
SEN |
Ítem 11 |
53,31 |
6,69 |
–25,02 |
–16,15 |
|
SEN |
Ítem 10 |
62,3 |
–13,56 |
1,63 |
–15,54 |
–21,67 |
SEN |
Ítem 12 |
59,4 |
–10,02 |
–28,83 |
–18,78 |
|
SEN |
Ítem 11 |
83,07 |
–34,58 |
5,54 |
–2,52 |
–15,74 |
SEN |
Ítem 17 |
53 |
–2,92 |
20,72 |
–19,22 |
|
SEN |
Ítem 12 |
59,41 |
41,81 |
10,37 |
–7,52 |
34,31 |
SEN |
Ítem 6 |
25,85 |
55,79 |
–39,25 |
–37,35 |
|
SEN |
Ítem 15 |
75,42 |
10 |
–36,19 |
4,07 |
9,31 |
SEN |
Ítem 8 |
27,64 |
–68,14 |
–24,01 |
38,46 |
|
SEN |
Ítem 16 |
69,22 |
–5,12 |
–20,43 |
–45,61 |
1,14 |
SEN |
Ítem 14 |
–20,24 |
47,36 |
–14,69 |
–1,85 |
|
SEN |
Ítem 17 |
67,32 |
–19 |
–20,11 |
–18,1 |
–19,04 |
SEN |
Ítem 16 |
37,81 |
–58,1 |
–7,81 |
17,15 |
|
SNRF |
Ítem 21 |
77,24 |
9,45 |
8,76 |
21,17 |
9,04 |
SEN |
Ítem 2 |
39,63 |
–6,71 |
54,32 |
–31,72 |
|
SNRF |
Ítem 22 |
67,85 |
–35,98 |
30,71 |
–1,77 |
29,33 |
SEN |
Ítem 3 |
–6,81 |
9,99 |
71,67 |
–7,1 |
|
C |
Ítem 18 |
38,51 |
77,19 |
25,98 |
10,8 |
–13,07 |
SEN |
Ítem 15 |
34,71 |
–4,32 |
65 |
–17,37 |
|
C |
Ítem 19 |
33,87 |
82,8 |
10,99 |
7,96 |
–1,3 |
SEN |
Ítem 5 |
0,41 |
44,63 |
10,81 |
57,35 |
|
C |
Ítem 20 |
23,39 |
66,01 |
25,16 |
–10,68 |
5,73 |
SEN |
Ítem 7 |
33,89 |
31,89 |
29,5 |
63,75 |
|
SNRF |
Ítem 23 |
22,14 |
–33,25 |
63,05 |
6,21 |
26,37 |
SEN |
Ítem 4 |
45,21 |
–34,83 |
2,7 |
42,33 |
|
SNRF |
Ítem 24 |
50,66 |
–16,32 |
65,63 |
33,25 |
12,97 |
SEN |
Ítem 13 |
21,7 |
49,68 |
–14,65 |
53,16 |
|
SNRF |
Ítem 25 |
37,66 |
–15,77 |
58,43 |
–11,98 |
–36,37 |
|||||||
SEN |
Ítem 4 |
23,61 |
37,65 |
–39,43 |
55,09 |
25,16 |
|||||||
SEN |
Ítem 14 |
–1,21 |
5,09 |
–9,56 |
69,85 |
–43,75 |
|||||||
SEN |
Ítem 13 |
44,39 |
–4,68 |
–32,85 |
–22,41 |
63,94 |
|||||||
SEN |
Ítem 2 |
51,51 |
57,39 |
0,82 |
6,3 |
–17,12 |
|||||||
SEN |
Ítem 3 |
–18,59 |
–6,21 |
2,07 |
20,95 |
30,1 |
|||||||
SEN |
Ítem 5 |
54,45 |
–31,21 |
–30,34 |
60,35 |
14,21 |
|||||||
SEN |
Ítem 7 |
47,61 |
–50,62 |
1,16 |
40,24 |
–0,67 |
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C: comunicación; SEN: sobre enfermedades neuromusculares; SNRF: sobre nuestros recursos familiares. |
Spanish translation and validation of the Neuromuscular Module of the Pediatric Quality of Life Inventory (PedsQL): evaluation of the quality of life perceived by 5-7 years old children with neuromuscular disorders and by their parents Introduction. The recent advances in the therapies for some neuromuscular disorders imply a better prognosis. As a consequence, health-related quality of life has emerged as a core outcome. It is particularly important to know both the self-perceived health-related quality of life by children, as soon as possible, as well as the parental perception. Therefore, it is essential to have valid and specific scales for proper assessment. Aim. To assess the validity and reliability of the Spanish version of Pediatric Quality of Life Inventory (PedsQL) Neuromuscular Module for self-perceived and parent perceived quality of life of children aged 5-7 with neuromuscular disorders. Subjects and methods. Cross-cultural validity of the Spanish version was carried out with the permission of the Mapi-Research-Trust. Subsequently, a test-retest was administered to 27 children aged 5-7 and 37 parents in order to evaluate internal consistency, intra-observer reliability and construct validity. Results. The Cronbach alpha coefficient showed good internal consistency for children and was rated as excellent by parents. Furthermore, the intra-observer correlation indicated an excellent reliability for both. Construct validity analysis suggested that a new scale structure with more dimensions might be more adequate. Moreover, said structure will also explain a greater percentage of variability. Conclusion. The Spanish version of PedsQL Neuromuscular Module for the self-perceived and parent-perceived quality of life of children aged 5-7 showed good internal consistency and reliability. Key words. Health-related quality of life. Neuromuscular disorders. Pediatric physiotherapy. PedsQL. Validity and reliability. |