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Validation of the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55 and QOLCE-16) for use by parents of young adults with childhood-onset epilepsy

2020; Elsevier BV; Volume: 104; Linguagem: Inglês

10.1016/j.yebeh.2020.106904

1525-5069

Klajdi Puka, Shane W. Goodwin, Mark A. Ferro, Mary Lou Smith, Elysa Widjaja, Kelly K. Anderson, Kathy N. Speechley,

Gastroesophageal reflux and treatments

Objective The objective of the study was to validate the parent-proxy reported Quality of Life in Childhood Epilepsy Questionnaire (QOLCE) in a sample of young adults with a history of childhood-onset epilepsy, allowing for the utilization of a consistent informant (the parent) across the youths' stages of development. The 55-item (QOLCE-55) and 16-item versions (QOLCE-16) were evaluated. Methods Data came from 134 young adults (aged 18.0 to 28.5 years) with childhood-onset epilepsy, recruited through community and tertiary care centers across Canada. Confirmatory factor analysis (CFA) was used to assess the higher-order factor structure of the QOLCE. Cronbach's alpha was used to evaluate internal consistency. Convergent validity was assessed by intraclass correlation coefficients (ICC) with the youth self-reported Quality of Life in Epilepsy Questionnaire (QOLIE-31-P). Results The higher-order factor structure of the QOLCE-55 and QOLCE-16 demonstrated adequate fit: QOLCE-55 comparative fit index (CFI) = 0.968, Tucker–Lewis index (TLI) = 0.966; and root mean square of approximation (RMSEA) = 0.061; QOLCE-16 CFI = 0.966, TFI = 0.959, RMSEA = 0.141. Higher-order factor loadings were strong, ranging from 0.71 to 0.90. Internal consistency was excellent for the total score (αQOLCE-55 = 0.97; αQOLCE-16 = 0.93) and good-excellent for each subscale (α > 78). Convergent validity was moderate to good for the total score (ICC > 0.72) and each subscale (ICC > 0.51). Significance These findings provide support for the use of the QOLCE-55 and QOLCE-16 among young adults with a history of childhood-onset epilepsy. Utilizing a consistent measure and informant across the stages of development is essential to reliably evaluate change over time.