Health-related quality of life in children and adolescents with cerebral palsy

	All participants - proxy reports			Self-reported participants
	Children(8-12 y)N 43(47.3%)	Adolesc.(13-17 y)N 48(52.7%)	AllN 91	Children(8-12 y)N 26(54.2%)	Adolesc.(13-17 y)N 22(45.8%)	AllN 48
Age (mean)	10 y 6 mo,SD 1.2	14 y,SD 0.9	12 y 4 mo,SD 2.02	10 y 8 mo,SD 1.1	13 y 11mo,SD 0.8	12 y 2 mo,SD 1.9
Gender
male	26 (23.3%)	27 (56.3%)	53 (58.2%)	13 (50.0%)	10 (45.5%)	23 (47.9%)
female	17 (39.5%)	21 (43.8%)	38 (41.8%)	13 (50.0%)	12 (54.5%)	25 (52.1%)
CP classification
spastic	35 (81.4%)uni 14 (33%)	43 (89.6%)uni 11 (23%)	78 (85.7%)uni 25 (27%)	24 (92.3%)uni 13 (50%)	22 (100%)uni 7 (32%)	46 (95.8%)uni 20 (42%)
dyskinetic dystonia	7 (16.3%)	4 (8.3%)	11 (12.1%)	2 (7.6%)	/	2 (4.2%)
dys.choreoathetosis	/	1 (2.1%)	1 (1.1%)	/	/	/
ataxic	1 (2.3%)	/	1 (1.1%)	/	/	/
GMFCS
I	18 (41.9%)	11 (22.9%)	29 (31.9%)	16 (61.5%)	8 (36.4%)	24 (50%)
II	10 (23.2%)	10 (20.8%)	20 (22.0%)	7 (26.9%)	7 (31.8%)	14 (29.2%)
III	3 (7.0%)	8 (16.7%)	11 (12.1%)	1 (3.8%)	4 (18.2%)	5 (10.4%)
IV	7 (16.3%)	8 (16.7%)	15 (16.5%)	2 (7.7%)	3 (13.6%)	5 (10.4%)
V	5 (11.6%)	11 (22.9%)	16 (17.6%)	/	/	/
IQ
> 70	25 (58.1%)	21 (43.8%)	48 (52.7%)	26 (100%)	22 (100%)	48 (100%)
50-70	7 (16.3%)	10 (20.8%)	15 (16.5%)	/	/	/
20-50	7 (16.3%)	11 (22.9%)	18 (19.8%)	/	/	/
< 20	4 (9.3%)	6 (12.5%)	10 (11.0%)	/	/	/
Epilepsy	15 (34.9%)	17 (35.4%)	32 (35.2%)	3 (11.5%)	3 (13.6%)	6 (12.5%)
Speech disorder	19 (44.2%)	22 (45.8%)	41 (45.1%)	7 (26.9%)	6 (27.3%)	13 (27.1%)
Attention disorder	14 (32.6%)	11 (22.9%)	25 (27.5%)	10 (38.5%)	5 (22.7%)	15 (31.3%)
Visual impairment	15 (34.9%)	19 (39.6%)	34 (37.4%)	7 (26.9%)	9 (40.9%)	16 (33.3%)
- severe	2 (4.7%)	2 (4.2%)	4 (4.4%)	1 (3.8%)	/	1 (2.1%)
Hearing impairment	4 (9.3%)	3 (6.3%)	7 (7.7%)	1 (3.8%)	1 (4.5%)	2 (4.2%)
- severe	2 (4.7%)	1 (2.1%)	3 (3.3%)	1 (3.8%)	1 (4.5%)	2 (4.2%)
Reporting pain	7 (16.3%)	14 (29.2%)	21 (23.1%)	2 (7.7%)	5 (22.7%)	7 (14.6%)
Disrupted sleep	8 (18.6%)	12 (25.0%)	20 (22.0%)	2 (7.7%)	1 (4.5%)	3 (6.3%)
Gastrostomy	1 (2.3%)	/	1 (1.1%)	/	/	/
Reduced bone density	4 (9.3%)	5 (10.4%)	9 (10.0%)	/	/	/

DISABKIDS final scores (transformed to a scale of 1-100) by different modules, items and demographic properties.

SELF - REPORTSTransformed scores(0-100; mean, SD)		ALL		CHILDREN		ADOLESCENTS		MALES		FEMALES
SELF - REPORTSTransformed scores(0-100; mean, SD)		valid items	score	valid items	score	valid items	score	valid items	score	valid items	score
DCGM-37-S
	Independence	48	70.4, SD 20.1	26	75.6, SD 15.7	22	64.2, SD 23.1	23	69.4, SD 22.8	25	71.3, SD 17.6
	Physical	48	74.6, SD 18.9	26	80.3, SD 11.9	22	68.0, SD 23.5	23	74.5, SD 21.2	25	76.9, SD 12.9
	Emotion	48	85.3, SD 17.7	26	91.1, SD 9.8	22	78.6, SD 22.4	23	85.2, SD 20.5	25	71.5, SD 34.9
	Exclusion	48	80.2, SD 17.0	26	84.9, SD 10.5	22	74.6, SD 21.3	23	78.3, SD 17.7	25	69.5, SD 16.2
	Inclusion	48	65.7, SD 19.5	26	70.4, SD 16.9	22	60.2, SD 21.3	23	61.6, SD 22.2	25	82.0, SD 16.5
	Medication	14	78.6, SD 26.8	7	83.2, SD 12.4	7	74.0, SD 36.9	9	82.5, SD 22.6	5	85.4, SD 15.3
	General	48	75.6, SD 16.0	26	80.8, SD 10.0	22	69.4, SD 19.5	23	74.2, SD 19.0	25	74.8, SD 17.2
DCSM-CPM-S
	Impact	44	76.1, SD 15.0	23	79.3, SD 10.4	21	72.6, SD 18.4	20	74.5, SD 18.3	24	77.5, SD 11.8
	Communication	44	92.3, SD 20.6	23	98.9, SD 3.6	21	85.1, SD 28.1	20	90.0, SD 25.2	24	94.3, SD 16.1
	Total	44	78.8, SD 14.7	23	82.6, SD 8.7	21	74.7, SD 18.7	20	77.1, SD 18.7	24	80.3, SD 10.6

Implemented interventions and socio-economic data of 91 participants.

	All participants - proxy reports			Self-reported participants
	Children(8-12 y)N 43(47.3%)	Adolesc.(13-17 y)N 48(52.7%)	AllN 91	Children(8-12 y)N 26(54.2%)	Adolesc.(13-17 y)N 22(45.8%)	AllN 48
Interventions:	3.9 per person (min 1, max 11)			/	/	/
Neurodevelopmental th.	91 (100%)			/	/	/
- age at onset	65 (71% ) < 6 months,			/	/	/
- age at onset	77 (85%) <12 months			/	/	/
Physiotherapy	69 (75.8%)			/	/	/
Occupational therapy	48 (52.7%)			/	/	/
Speech-language therapy	31 (43.1%)			/	/	/
Special pedagogy	25 (27.5%)			/	/	/
Hypo therapy	20 (21.9%)			/	/	/
Hydrotherapy	17 (18.7%)			/	/	/
Psychological therapy	11 (12.1%)			/	/	/
Social pedagogy	9 (9.8%)			/	/	/
Complementary methods	7 (7.7%)			/	/	/
Orthopedic therapy	3 (3.3%)			/	/	/
Typhlopedagogy	2 (2.2%)			/	/	/
Surdopedagogy	2 (2.2%)			/	/	/

eISSN:: 1854-2476
Language:: English

Publication timeframe:: 4 times per year
Journal Subjects:: Medicine, Clinical Medicine, Hygiene and Environmental Medicine

Journal RSS Feed

Health-related quality of life in children and adolescents with cerebral palsy

Article Category: Original scientific article

Published Online: Jul 28, 2016

Page range: 1 - 10

Received: Mar 15, 2016

Accepted: May 15, 2016

DOI: https://doi.org/10.1515/sjph-2017-0001

Keywordscerebral palsy, children, adolescents, quality of life, self-reports, proxy-reports

© National Institute of Public Health, Slovenia

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.

Demographic and health-related data of 91 participants.

DISABKIDS final scores (transformed to a scale of 1-100) by different modules, items and demographic properties.

Implemented interventions and socio-economic data of 91 participants.

Keywords
cerebral palsy, children, adolescents, quality of life, self-reports, proxy-reports