Neuropediatrics 2006; 37 - THP123
DOI: 10.1055/s-2006-945946

MEASURING HEALTH-RELATED QUALITY OF LIFE (HRQL) IN CHILDHOOD EPILEPSY: SHOULD PARENTS OR CHILDREN RESPOND?

D Kulik 1, GM Ronen 1, P Rosenbaum 1, C Cunningham 1, R Shukla 1, DL Streiner 2
  • 1McMaster University, Hamilton, ON
  • 2University of Toronto, Toronto ON, Canada

Objective: To correlate childhood epilepsy-specific HRQL measure(s) 'C/P-HRQLCE'- and the generic PedsQL measure as reported by children and parents.

Methods: Inclusion: active epilepsy, ages 8–14, estimated IQ >80, ability to understand English. Children and parents separately completed the: C/P-HRQLCE, PedsQL, Strength and Difficulties Questionnaire (SDQ), and Internalizing Symptoms Scale for Children (ISSC). Analyses to determine Pearson's-r were conducted with SPSS.

Results: N=45.

Group

Measure 1

Measure 2

Pearson's r

P value

Child/child

C-HRQLCE

PedsQL

0.59

<0.00

Child/child

C-HRQLCE

SDQ

0.55

0.01

Child/child

C-HRQLCE

ISSC

0.49

<0.00

Child/child

PedsQL

SDQ

0.17

0.58

Child/child

PedsQL

ISSC

0.62

<0.00

Parent/parent

P-HRQLCE

PedsQL

0.65

<0.00

Parent/parent

PedsQL

SDQ

0.45

0.01

Child/parent

C-HRQLCE

P-HRQLCE

0.57

<0.00

Child/parent

PedsQL

PedsQL

0.50

<0.00

Correlations between the complete measures were better than between comparable domains from different measures.

Conclusions: Correlations between epilepsy-specific and generic measures were statistically significant but only in the range of ˜0.60 implying that each also measures somewhat distinct aspects of HRQL. Both correlated strongly with ICCS. The C-HRQLCE correlated relatively higher with the SDQ than did the PedsQL, although the latter showed good correlations between the parents' versions. Both measures showed that the children's and parents' responses correlated only at about 0.50, indicating that some children's views of their own quality of life may differ significantly from their parents'. We believe that for accurate and more complete HRQL assessments views from both children and parents are necessary. The differences in results between epilepsy-specific and generic measure need further evaluations. It is likely that in future clinical studies both measures will be used to complement each other.