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Table 2 Univariate analysis for PCS and MCS of the SF-12v2 (n = 158)

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

Measure Number of observations PCS MCS
Mean (SD) 53.7 (8.6) Co-efficient Mean (SD) 41.9 (11.6) Co-efficient
Parent’s age 152     
 Under 30 years 12 53.5 (5.9) Reference 35.9 (15.7) Reference
 30 to 40 years 80 54.7 (8.7) 1.23 41.9 (11.3) 5.97
 40 years or over 60 52.9 (8.7) −0.59 43.3 (11.3) 7.37**
Parent’s qualification 147     
 11 or 12 years of school 27 53.2 (7.9) Reference 41.8 (13.2) Reference
 TAFE/Technical certificate 29 53.6 (9.3) 0.40 41.2 (9.0) −0.57
 University degree 91 54.4 (8.4) 1.14 42.0 (12.1) −0.23
Maternal work status 147     
 Full-time homemaker 64 55.1 (8.1) Reference 42.7 (11.3) Reference
 Part-time employment 37 50.4 (9.4) −4.69** 42.4 (11.9) −0.32
 Full-time employment 46 55.7 (7.5) 0.57 40.8 (11.2) −1.86
Number of siblings 156     
 0 36 54.3 (8.1) Reference 37.4 (13.8) Reference
 1 64 54.4 (7.5) 0.07 41.9 (11.3) 4.47*
 2 or more 56 52.9 (9.9) −1.41 45.0 (9.6) 7.56**
Child order 156     
 The first child 72 54.4 (7.9) Reference 40.2 (11.7) Reference
 Laterborn 84 53.3 (9.1) −1.02 43.5 (11.4) 3.24*
Child’s age 158     
 Under 1.5 years 24 53.3 (10.0) Reference 39.8 (13.2) Reference
 1.5 to 7 years 69 54.6 (7.6) 1.31 42.4 (12.4) 2.63
 7 to 13 years 40 52.7 (9.8) −0.63 43.7 (9.7) 3.94
 13 years or over 25 53.0 (8.0) −0.29 39.2 (10.7) −0.55
Child’s gender 158     
 Female 136 53.9 (8.3) Reference 41.8 (11.6) Reference
 Male 22 52.3 (10.4) −1.60 41.9 (12.1) 0.10
Child’s country of birth 158     
 North America 90 56.9 (5.9) Reference 41.5 (12.1) Reference
 The United Kingdom 12 54.2 (10.9) −2.63 41.1 (8.4) −0.40
 Australia and New Zealand 14 45.9 (7.4) −10.98** 43.6 (12.5) 2.07
 Western Europe 29 47.6 (10.0) −9.21** 41.2 (12.2) −0.30
 Others 13 52.9 (8.2) −3.93* 44.5 (9.7) 3.02
Mutation group 158     
 No functional protein 50 53.5 (8.0) Reference 43.0 (12.0) Reference
 Missense/In-frame mutations 41 52.5 (9.9) −0.97 39.5 (10.8) −3.49
 Truncations aa172 to aa781 44 53.7 (8.7) 0.23 42.0 (11.5) −0.98
 Truncations after aa781 12 53.6 (7.4) 0.15 46.2 (9.1) 3.21
 Mutations not grouped 11 58.5 (6.5) 5.05* 39.5 (15.1) −3.49
Feeding pattern 153     
 Oral intake only 114 54.3 (8.1) Reference 41.0 (12.2) Reference
 Combination use 14 55.0 (6.8) 0.74 39.7 (9.4) −1.32
 Enteral nutrition only 25 49.6 (11.0) −4.72** 47.4 (9.3) 6.37**
Dietary concerns 123     
 None 62 55.9 (7.3) Reference 41.9 (11.7) Reference
 Occasional 39 51.8 (7.4) −4.14** 39.9 (12.6) −2.00
 Frequent or constant 22 55.7 (8.0) −0.25 42.5 (10.3) 0.67
Floor sitting 129     
 No assistance 83 54.3 (7.6) Reference 41.7 (11.7) Reference
 Some assistance 13 54.5 (7.8) 0.20 42.0 (12.5) 0.27
 Maximal assistance/unable 33 51.3 (10.3) −3.02* 43.9 (10.6) 2.25
Taking 10 steps forward 126     
 No assistance 28 54.8 (7.2) Reference 41.6 (12.6) Reference
 Some assistance 19 57.3 (7.2) 2.52 40.6 (14.3) −0.95
 Maximal assistance/unable 79 52.4 (8.9) −2.37 43.2 (10.4) 1.63
Eye contact 148     
 No 78 53.0 (9.6) Reference 41.0 (12.0) Reference
 Yes 70 54.6 (7.3) 1.57 42.5 (11.7) 1.54
Communication 129     
 No/Simple method 44 53.0 (9.0) Reference 44.1 (9.6) Reference
 Complex gestures/vocalisation 58 53.5 (8.5) 0.52 41.2 (12.4) −2.91
 Sign/Spoken language 27 55.0 (7.5) 1.98 42.1 (12.0) −2.02
Seizure frequency 146     
 Absent 12 53.7 (7.5) Reference 43.2 (11.3) Reference
 Yearly/Monthly 15 53.4 (9.8) −0.33 41.3 (13.1) −1.82
 Weekly 26 54.5 (6.7) 0.84 40.5 (10.7) −2.71
 1 to 5 times a day 69 53.4 (8.9) −0.28 41.1 (12.7) −2.09
 At least 5 times a day 24 54.2 (9.8) 0.49 45.6 (8.5) 2.47
Sleep difficulties 144     
 1.00 to 1.50 (1st quartile) 36 54.5 (8.3) Reference 45.2 (11.3) Reference
 1.50 to 1.81 (2nd quartile) 38 54.1 (7.7) −0.46 42.7 (10.8) −2.58
 1.81 to 2.17 (3rd quartile) 35 54.6 (7.5) 0.11 42.6 (11.2) −2.63
 2.17 to 5.00 (4th quartile) 35 52.5 (10.1) −2.00 38.2 (12.1) −7.06**
Hospitalisation rate 146     
 0 to 0.38 (1st quartile) 34 52.9 (7.8) Reference 42.5 (10.2) Reference
 0.38 to 0.86 (2nd quartile) 38 54.6 (8.3) 1.66 43.0 (12.2) 0.50
 0.86 to 2.14 (3rd quartile) 36 53.1 (8.4) 0.23 39.9 (10.3) −2.60
 2.14 to 13.70 (4th quartile) 38 54.0 (9.7) 1.11 43.7 (12.2) 1.19
Respite care 148     
 None 36 54.4 (8.3) Reference 42.7 (11.8) Reference
 Formal only 21 52.0 (10.1) −2.41 44.9 (8.3) 2.21
 Informal only 41 54.1 (8.6) −0.26 41.1 (13.9) −1.56
 Both formal and informal 50 53.2 (8.4) −1.25 40.8 (10.4) −1.85
Financial difficulty 144     
 No 83 53.9 (8.5) Reference 44.0 (11.2) Reference
 Yes 61 52.9 (8.9) −0.97 39.1 (11.6) −4.89**
  1. *p <0.10 **p <0.05