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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
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 (1st quartile) Reference Reference Reference Reference Reference
1.50 to 1.81 (2nd quartile) −0.10 −0.08 −0.28 −0.09 −0.28
1.81 to 2.17 (3rd quartile) −0.06 −0.03 −0.26 0.08 −0.10
2.17 to 5.00 (4th quartile) −0.15 −0.09 −0.26 −0.16 −0.23
Hospitali-sation rate 0 to 0.38 (1st quartile) Reference Reference Reference Reference Reference
0.38 to 0.86 (2nd quartile) 0.14 0.07 0.09 −0.01 0.21
0.86 to 2.14 (3rd quartile) −0.07 −0.18 −0.37 −0.22 0.08
2.14 to 13.70 (4th 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
Yes 0.11 0.04 −0.27 0.03 0.02
  1. #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)
  2. *p <0.10 **p <0.05
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Orphanet Journal of Rare Diseases

ISSN: 1750-1172