Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life

Mori, Yuka; Downs, Jenny; Wong, Kingsley; Anderson, Barbara; Epstein, Amy; Leonard, Helen

doi:10.1186/s13023-016-0563-3

Orphanet Journal of Rare Diseases

Table 5 Multivariate analysis for the BCFQOL Scale and coefficients^#1

From: Impacts of caring for a child with the CDKL5 disorder on parental wellbeing and family quality of life

Measure		Family interaction	Parenting	Emotional wellbeing	Physical/Material wellbeing	Disability-related support
Feeding pattern	Oral intake only	Reference	Reference	Reference	Reference	Reference
	Combination use	−0.12	−0.16	0.13	−0.16	0.13
	Enteral nutrition only	0.07	0.02	-0.06	-0.03	-0.06
Dietary concerns	None	Reference	Reference	Reference	Reference	Reference
	Occasional	−0.15	−0.25	−0.08	−0.25	−0.19
	Frequent or constant	−0.29	−0.29	0.19	−0.19	−0.26
Floor sitting	No assistance	Reference	Reference	Reference	Reference	Reference
	Some assistance	−0.02	0.05	0.42	−0.10	0.17
	Maximal assistance/Unable	0.17	0.16	0.19	0.14	0.20
Taking 10 steps forward	No assistance	Reference	Reference	Reference	Reference	Reference
	Some assistance	0.21	−0.03	0.13	0.02	0.09
	Maximal assistance/Unable	0.18	0.08	0.25	0.09	0.07
Eye contact	No	Reference	Reference	Reference	Reference	Reference
Eye contact	Yes	−0.16	−0.18	−0.19	−0.12	−0.05
Communication	No/Simple method	Reference	Reference	Reference	Reference	Reference
	Complex gestures/vocalisation	−0.12	−0.11	−0.33*	−0.11	−0.15
	Sign/Spoken language	−0.02	−0.02	−0.31	0.03	0.06
Seizure frequency	Absent	Reference	Reference	Reference	Reference	Reference
	Yearly/Monthly	−0.28	−0.06	0.40	−0.15	0.26
	Weekly	−0.12	0.13	0.57*	−0.05	0.26
	1 to 5 times a day	−0.25	−0.06	0.13	−0.06	0.18
	At least 5 times a day	−0.07	0.14	0.53	0.06	0.35
Sleep difficulties	1.00 to 1.50 (1^st quartile)	Reference	Reference	Reference	Reference	Reference
	1.50 to 1.81 (2^nd quartile)	−0.10	−0.08	−0.28	−0.09	−0.28
	1.81 to 2.17 (3^rd quartile)	−0.06	−0.03	−0.26	0.08	−0.10
	2.17 to 5.00 (4^th quartile)	−0.15	−0.09	−0.26	−0.16	−0.23
Hospitali-sation rate	0 to 0.38 (1^st quartile)	Reference	Reference	Reference	Reference	Reference
	0.38 to 0.86 (2^nd quartile)	0.14	0.07	0.09	−0.01	0.21
	0.86 to 2.14 (3^rd quartile)	−0.07	−0.18	−0.37	−0.22	0.08
	2.14 to 13.70 (4^th quartile)	0.10	0.24	0.09	0.03	0.13
Respite care	None	Reference	Reference	Reference	Reference	Reference
	Formal only	−0.29	−0.18	−0.72**	−0.07	−0.01
	Informal only	−0.06	−0.20	−0.47**	−0.23	−0.28
	Both formal and informal	−0.39**	−0.26	−0.36	−0.32**	−0.39**
Financial difficulty	No	Reference	Reference	Reference	Reference	Reference
Financial difficulty	Yes	0.11	0.04	−0.27	0.03	0.02

^#1Adjusted for parent’s age (a continuous variable), parent’s qualification (a binary variable; university degree or lower), parent’s work status, number of siblings, the first child, child’s age (a continuous variable), child’s country of birth (a binary variable; North America or others) and the scores of PCS and MCS (continuous variables)
*p <0.10 **p <0.05

Back to article page

ISSN: 1750-1172

Contact us

Submission enquiries: Access here and click Contact Us
General enquiries: info@biomedcentral.com