Comments on Health-Related Quality of Life Measures for Children and Adolescents with Epilepsy

Volume 11 • Number 4 • 2008 VA L U E I N H E A LT H

Comments on Health-Related Quality of Life Measures for Children and Adolescents with Epilepsy The progress of pediatric health-related quality of life (HRQOL) assessments was well described in this issue [1]. However, the section about epilepsy specific instruments needs clarifications. First, the Child Epilepsy Questionnaire—Parental form is not an HRQOL measure. It contains one part, Child Seizure Profile, assessing seizure description and medication side effects, and the other one specifically assessing the HRQOL of children with epilepsy, named the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE) [2]. The QOLCE passed substantial validations for reliability, validity, and responsiveness, and it was approved as an epilepsy HRQOL measure. Second, the Quality of Life in Epilepsy (QOLIE-89) inventory is an epilepsy specific measure for the HRQOL assessment of adults with epilepsy, who are 17 years old and over [3]. This questionnaire was not used in the study of Wildrick et al., but the one developed specifically for that study [4]. I could not find any reference that this measure was psychometrically evaluated or ever again used. Finally, the review omitted to mention the HRQOL in Pediatric Epilepsy Scale [5] and HRQOL Instrument for Children with Epilepsy (HRQL-C-Ep) [6]. The first one is a self-report/parent measure for the HRQOL assessment of everyday living. Its psychometric properties were not tested. The other one is a self-/proxyreport measure for children (8–15 years) assessing HRQOL in interpersonal/social, worries/concerns, emotional, secrecy, and behavior domains. For this measure were demonstrated good reliability and validity. If the inclusion/exclusion criteria from the review are further applied, above all theoretical background, development, and validation, the QOLCE, HRQL-C-

Ep, and QOLIE-AD48 [7] are the current gold standards for HRQOL assessment in children and adolescents with epilepsy.—Dejan Stevanovic, Health Care Center Odzaci—Family Medicine, Odzaci, Serbia.–– Dejan Stevanovic, MD, Health Care Center Odzaci, Family Medicine, Mostong Street 25 Odzaci 25250, Serbia And Montenegro.

References 1 Solans M, Pane S, Estrada MD, et al. Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments. Value Health (Online Early Articles). 10.1111/j.1524-4733.2007.00293.x. 2 Sabaz M, Cairns DR, Lawson JA, et al. Validation of a new quality of life measure for children with epilepsy. Epilepsia 2000;41:765–74. 3 Devinsky O, Vickrey BG, Cramer J, et al. Development of the quality of life in epilepsy inventory. Epilepsia 1995;36:1089–104. 4 Wildrick D, Parker-Fisher S, Morales A. Quality of life in children with well-controlled epilepsy. J Neurosci Nurs 1996;28:192–8. 5 Arunkumar G, Wyllie E, Kotagal P, et al. Parent and patient-validated content for pediatric epilepsy quality of life assessment. Epilepsia 2000;41:1474–84. 6 Ronen GM, Streiner DL, Rosenbaum P, the Canadian Pediatric Epilepsy Network. Health-related quality of life in children with epilepsy: development and validation of self-report and parent proxy measures. Epilepsia 2003;44:598–612. 7 Cramer J, Westbrook L, Devinsky O, et al. Development of the quality of life in epilepsy inventory for adolescents: the QOLIE-AD-48. Epilepsia 1999;40: 1114–21.

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© 2008, International Society for Pharmacoeconomics and Outcomes Research (ISPOR)

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