Quality of life of families and siblings of children with cerebral palsy treated at a reference neurorehabilitation center in Brazil

Dias, Bruno Leonardo Scofano; Rodrigues, Maura Calixto Cecherelli de; Duarte, José Luiz Muniz Bandeira

doi:10.1016/j.jped.2024.03.010

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Original article • J. Pediatr. (Rio J.) 100 (5) • 2024 • https://doi.org/10.1016/j.jped.2024.03.010 linkcopy

Quality of life of families and siblings of children with cerebral palsy treated at a reference neurorehabilitation center in Brazil^☆

Authorship SCIMAGO INSTITUTIONS RANKINGS

Objectives To investigate the associations between caregivers’ burden, family quality of life (QoL), and siblings’ QoL in Brazilian families of children with cerebral palsy, and to analyze siblings’ QoL using as a parameter the QoL of typically developed Brazilian children.

Methods It was a cross-sectional study. The 212 families, 212 caregivers and 131 siblings completed the Family Quality of Life Scale, Burden Interview, and KIDSCREEN-27 Child and Adolescent Version and Parents Version questionnaires at a neurorehabilitation center in southeast Brazil. Univariable and multivariable models were used.

Results Family QoL significantly worsened as caregivers’ burden increased (95 % CI -0.66 to -0.38). Caregivers’ burden was significantly lower with increasing family QoL scores (95 % CI -0.52 to -0.30). Self-reported siblings’ QoL was significantly worse than that of their typically developed peers (95 % CI -7.6 to -3.6). Self-reported siblings’ QoL was significantly lower as siblings’ age (95 % CI -2.52 to -0.59) and caregivers’ burden (95 % CI -0.35 to -0.05) increased. Parent-reported siblings’ QoL was significantly lower with increasing caregivers’ burden (95 % CI -0.45 to -0.16) and higher as family QoL increased (95 % CI 0.09 to 0.37).

Conclusions The cross-sectional nature of these data precludes any statement of causality. Family QoL worsened with higher caregivers’ burden levels. Lower caregivers’ burden scores were associated with a higher family QoL. Siblings’ QoL was impaired as compared to typically developed peers, worse among older siblings, and as caregivers’ burden increased and better with higher family QoL levels. Future multicenter studies may validate the generalizability of the present findings.

Keywords
Quality of life; Family; Siblings; Cerebral palsy

Families N (%).	212 (100)
Two legal guardians	166 (78.3)
One legal guardian	46 (21.7)
Low-income	.167 (78.7)
High-income	45 (21.3)
Low educational level	77 (36.3)
High educational level	135 (63.7)
Very dissatisfied with family QoL	1 (0.5)
Dissatisfied with family QoL	2 (0.9)
Moderately satisfied with family QoL	45 (21.2)
Satisfied with family QoL	100 (47.2)
Very satisfied with family QoL	64 (30.2)
Family Quality of Life Scale total score Median (IQR)	96.0 (86.0-107.0)
Caregivers’ burden N (%)	212 (100)
Absent burden	45 (21.2)
Mild to moderate burden	122 (57.5)
Moderate to severe burden	38 (17.9)
Severe burden	7 (3.3)
Burden Interview total score Median (IQR)	30.0 (22.0-38.2)
Patients (N)	212
Age N (%)
2-5 years	93 (43.9)
6-9 years	74 (34.9)
10-12 years	28 (13.2)
13-16 years	17 (8.0)
Age (years) Median (IQR)	6 (4-10)
Sex N (%)
Male	120 (56.6)
Female	92 (43.4)
Functional characteristics N (%)
Low motor impairment	109 (51.4)
High motor impairment	103 (48.6)
Low swallowing impairment	182 (85.9)
High swallowing impairment	30 (14.1)
Intellectual impairment N (%)
Present global developmental delay or intellectual disability	169 (79.7)
Absent global developmental delay or intellectual disability	43 (20.3)
Epilepsy N (%)
Present epilepsy	108 (50.9)
Absent epilepsy	104 (49.1)
Siblings (N)	131
Age N (%)
10-12 years	65 (49.6)
13-15 years	66 (50.4)
Age (years) Median (IQR)	13 (11-14)
Sex N (%)
Male	62 (47.3)
Female	69 (52.7)

		KIDSCREEN-27 Child and Adolescent Version
		Siblings	TDBCA		95 % CI
	N = 131	Mean (SD)	Mean (SD)	P	Inferior	Superior	Effect size
Physical well-being		70.6 (16.3)	77.7 (14.1)	<0.001	- 9.1	- 3.1	- 0.389
Psychological well-being		78.5 (13.9)	85.7 (12.1)	<0.001	- 10.0	- 4.3	- 0.661
Autonomy and relationship with parents		72.3 (14.1)	77.0 (15.8)	0.006	- 5.6	- 1.3	- 0.274
Social support and peers		76.7 (17.9)	81.9 (16.5)	0.04	- 6.9	- 1.9	- 0.207
School environment		78.0 (16.2)	85.5 (14.5)	<0.001	- 10.5	- 3.0	- 0.482
Total score		75.2 (10.9)	81.3 (10.5)	<0.001	- 7.6	- 3.6	- 0.550

Characteristic	FQoLS total scores			BI total scores
Characteristic	CF	95 % CI	P	CF	95 % CI	P
Patients’ age	0.24	−0.22,0.71	0.30	−0.38	−0.80,0.02	0.064
Patients’ sex, male vs female	1.37	−2.19,4.93	0.44	−1.03	−2.14,4.22	0.521
GMFCS, low impairment vs high impairment	−0.25	−4.43,3.91	0.90	0.66	−3.06,4.38	0.727
EDACS, low impairment vs high impairment	3.73	−1.83,9.31	0.18	−0.69	−569,4.30	0.784
GDD/ID, absent vs present	0.371	−4.64,5.38	0.88	3.00	−1.46,7.46	0.186
Epilepsy, absent vs present	−0.82	−4.89,3.24	0.68	1.82	−1.80,5.45	0.323
Family Composition, 2 legal guardians vs 1 legal guardian	−1.79	−6.12,2.54	0.41	1.78	−2.08,5.65	0.363
Family Economic Level, low-income vs high-income	−3.46	−7.92, 0.99	0.12	0.679	−3.32,4.68	0.738
Educational Level, low level vs high level	4.27	0.38,8.16	0.03	2.50	−0.99,6.00	0.159
BI total score	−5.52	−0.66,−0.38	<0.001	-	-	-
FQoLS total score	-	-	-	−0.41	−0.52,−0.30	<0.001

Characteristic	KIDSCREEN-27 CAV total scores			KIDSCREEN-27 PAV total scores
Characteristic	CF	95 % CI	P	CF	95 % CI	P
Siblings’ age	−1.56	−2.52, −0.59	0.002	−0.76	−1.68, 0.15	0.101
Siblings’ sex, male vs female	−3.48	−6.97,6.24	0.05	1.95	−1.37, 5.28	0.248
Patients’ age	−0.30	−0.80, 0.19	0.22	0.05	−0.42, 0.53	0.814
Patients’ sex, male vs female	−2.57	−6.23, 1.08	0.16	−1.35	−4.85, 2.13	0.442
GMFCS, low impairment vs high impairment	0.24	−3.70, 4.20	0.90	−2.13	−5.91, 1.63	0.265
EDACS, low impairment vs high impairment	1.34	−4.81, 7.51	0.66	−1.45	−7.34, 4.42	0.624
GDD/ID, absent vs present	3.14	−1.52, 7.81	0.18	2.38	−2.07, 6.84	0.291
Epilepsy, absent vs present	−0.32	−4.09, 3.44	0.86	3.01	−0.57, 6.61	0.099
Family composition, 2 legal guardians vs 1 legal guardian	−4.89	−9.49, −0.29	0.03	−3.39	−7.78, 0.99	0.129
Family Economic Classification, low-income vs high-income	−0.73	−5.10, 3.63	0.74	−0.30	−4.48, 3.86	0.884
Educational Level, low level vs high level	−0.11	−3.98, 3.75	0.95	−1.85	−5.55, 1.83	0.321
BI total score	−0.20	−0.35, −0.05	0.007	−0.30	−0.45, −0.16	< .001
FQoLS total score	0.14	−0.01, 0.29	0.06	0.23	0.09, 0.37	0.002

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E-mail: jped2@sbp.com.br

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Quality of life of families and siblings of children with cerebral palsy treated at a reference neurorehabilitation center in Brazil☆

Quality of life of families and siblings of children with cerebral palsy treated at a reference neurorehabilitation center in Brazil^☆