Health related quality of life in mothers of children with epilepsy: 10 years after diagnosis

Klajdi Puka, Mark A. Ferro, Kelly K. Anderson, and Kathy N. Speechley

Supplementary File

Table S1. Baseline child, maternal and family characteristics of participants who did and did not participate at the ten-year follow-up.

Lost to follow-up / Participated at 10-yr follow-up
Child variables at baseline / mean (SD)
or n (%) / mean (SD)
or n (%) / p value
Sex, n female / 103 (48%) / 75 (47%) / .85
Age of first seizure, years / 6.92 (2.5) / 6.82 (2.5) / .70
Seizure severity (GASE)a / 5.34 (1.2) / 5.47 (1.2) / .30
Epilepsy syndrome, n / .75
Partial / 114 (60%) / 90 (59%)
Generalized / 80 (39%) / 64 (41%)
Physician reported:
Cognitive problems / 56 (27%) / 18 (11%) / <.001
Behavior problems / 39 (18%) / 17 (11%) / .04
Motor problems / 19 (9%) / 6 (4%) / .05
At least one of the above / 73 (35%) / 29 (18%) / <.001
Maternal and family variables at baseline
Age at baseline, years / 37.55 (6.5) / 38.97 (5.4) / .02
College/university level education, n / 103 (48%) / 96 (60%) / .02
Works full time, n / 139 (65%) / 109 (69%) / .47
Lives with spouse, n / 176 (82%) / 147 (92%) / .004
Household annual income, n / <.001
<$50,000 / 85 (43%) / 36 (24%)
$50,000-$99,999 / 79 (40%) / 70 (46%)
≥$100,000 / 34 (17%) / 46 (30%)
Family resources (FIRM) / 47.67 (11.0) / 53.24 (10.6) / <.001
Family demands (FILE) / 10.29 (6.9) / 8.44 (5.9) / .006
Family functioning (APGAR) / 13.28 (3.7) / 14.75 (3.7) / <.001
Maternal psychosocial variables at baseline
Depression Scale (CES-D) / 16.04 (10.3) / 11.94 (9.8) / <.001

a Physician reported scale, lower scores are of indicative of greater seizure severity; 5 corresponds to ‘somewhat severe’ (scores range from 1 to 7).

Table S2.Univariable linear regression results evaluating the relationship between child, maternal, and family factors at follow-up with maternal HRQOL.

Mental Health / Physical Health
Child variables at follow-up / B (95% CI) / p-value / B (95% CI) / p-value
Sex, (ref=male) / -3.97 (-6.84, -1.10) / .007 / -0.50 (-2.90, 1.91) / .68
Age / -0.12 (-0.71, 0.46) / .68 / -0.13 (-0.61, 0.35) / .58
Partial seizures (ref=generalized) / -1.45 (-4.45, 1.55) / .34 / 0.47 (-1.98, 2.93) / .70
Ever diagnosed with
Cognitive problems / -2.59 (-5.57, 0.39) / .09 / -0.51 (-2.97, 1.95) / .68
Behavioural problems / 1.11 (-2.5, 4.72) / .54 / 0.94 (-2.01, 3.9) / .53
Emotional problems / -3.34 (-6.71, 0.03) / .052 / 1.66 (-1.11, 4.44) / .24
Autism spectrum disorder / -0.81 (-6.48, 4.87) / .78 / -1.84 (-6.25, 2.58) / .41
At least one of the above / -1.19 (-4.13, 1.74) / .42 / -0.36 (-2.76, 2.05) / .77
Seizure free >1 year* / 4.07 (-0.13, 8.27) / .058 / 0.52 (-2.95, 4.00) / .77
Seizure free >5 years / 3.55 (0.40, 6.70) / .027 / 1.64 (-0.97, 4.26) / .22
Not taking anti-epileptic medications / -2.28 (-5.98, 1.41) / .22 / -1.78 (-4.99, 1.43) / .27
Maternal and family variables at follow-up
Age / -0.10 (-0.37, 0.17) / .46 / 0.1 (-0.12, 0.32) / .38
Has college/university level education / 1.44 (-1.79, 4.67) / .39 / 1.16 (-1.48, 3.8) / .39
Works full time / 2.99 (0.06, 5.93) / .046 / 1.05 (-1.37, 3.48) / .39
Lives with partner / -4.62 (-9.09, -0.16) / .042 / -1.6 (-5.29, 2.09) / .39
Household annual income / 2.73 (1.38, 4.09) / .0001 / 1.14 (-0.01, 2.28) / .051
Family resources (FIRM) / 0.50 (0.39, 0.60) / <.0001 / 0.19 (0.09, 0.29) / .0002
Family demands (FILE) / -0.86 (-1.09, -0.64) / <.0001 / -0.28 (-0.49, -0.07) / .010
Family functioning (APGAR) / 1.45 (1.14, 1.76) / <.0001 / 0.25 (-0.06, 0.56) / .12
Maternal psychosocial variables at follow-up
Depression Scale (CES-D) / -0.80 (-0.90, -0.69) / <.0001 / -0.19 (-0.32, -0.06) / .004
Perceived Stress Scale / -1.05 (-1.16, -0.93) / <.0001 / -0.19 (-0.35, -0.03) / .019

*In the multivariable model, seizure-freedom ≥ 1 year was not included because of its high correlation with seizure-freedom ≥ 5 years.

Table S3.Univariable linear regression results evaluating the relationship between child, maternal, and family factors at baseline with maternal HRQOL at follow-up.

Mental Health / Physical Health
Child variables at baseline / B (95% CI) / p-value / B (95% CI) / p-value
Age / 0.25 (-0.40, 0.89) / .45 / 0.13 (-0.37, 0.63) / .61
Seizure severity (GASE Score) / -0.59 (-1.86, 0.68) / .36 / 0.83 (-0.22, 1.89) / .12
Comorbidities at baseline
Cognitive problems / -0.76 (-5.39, 3.87) / .75 / -0.17 (-3.95, 3.62) / .93
Behavior problems / 1.73 (-3.02, 6.48) / .47 / 1.84 (-2.05, 5.72) / .35
Motor problems / -4.27 (-11.94, 3.40) / .27 / -1.92 (-8.21, 4.36) / .54
At least one of the above / -0.55 (-4.35, 3.25) / .77 / .44 (-2.66, 3.55) / .78
Maternal and family variables at baseline
Age / -0.05 (-0.33, 0.22) / .71 / 0.15 (-0.07, 0.36) / .18
Has college/university level education / 2.48 (-0.49, 5.46) / .10 / 2.71 (0.29, 5.12) / .028
Works full time / 2.17 (-0.97, 5.31) / .18 / -0.54 (-3.12, 2.04) / .68
Lives with partner / 0.13 (-5.43, 5.68) / .96 / -1.78 (-6.31, 2.75) / .44
Household annual income / 2.52 (0.49, 4.55) / .015 / 2.42 (0.78, 4.05) / .004
Family resources (FIRM) / 0.25 (0.12, 0.39) / .0002 / 0.1 (-0.01, 0.22) / .07
Family demands (FILE) / -0.45 (-0.69, -0.21) / .0003 / -0.06 (-0.27, 0.14) / .54
Family functioning (APGAR) / 0.48 (0.10, 0.87) / .015 / 0.19 (-0.13, 0.52) / .24
Maternal psychosocial variables at baseline
Depression Scale (CES-D) / -0.41 (-0.54, -0.27) / <.0001 / -0.03 (-0.15, 0.09) / .65

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