Validation of the Quality of Life in Childhood Epilepsy Questionnaire in American epilepsy patients
Introduction
The clinical management of epilepsy involves much more than control of seizures and requires recognition of potential adverse effects on all aspects of life. In epilepsy research, there is a clear and growing recognition that health-related quality of life (HRQOL) measurement adds new and important information to other traditional health outcome measures such as seizure control and cognitive improvement [1], [2], [3], [4], [5], [6], [7], [8], [9], [10], [11].
To date most childhood epilepsy studies utilise surrogate measures of HRQOL which evaluate limited domains of life function [12], [13], [14]. These surrogate measures include generic instruments such as the Child Behaviour Checklist [12], Developmental Behaviour Checklist [13], and Child Health Questionnaire [14]. Recently we have seen the development of disease-specific instruments of HRQOL for children with epilepsy. These instruments are a useful addition to the questionnaires presently available to the practitioner, as they are more sensitive to the condition of interest [15]. However, some still offer a limited evaluation. The Hague Restrictions in Childhood Epilepsy Scale is restricted to assessment of a child’s physical function [16]. The Impact of Paediatric Epilepsy Scale focuses on the psychosocial impact of epilepsy on the family [17]. The recently developed and validated Quality of Life in Epilepsy Inventory for Adolescents is a valuable tool measuring a number of life domains such as cognition, physical function, social function, behaviour, health perceptions and attitudes [18], [19]. However, it is limited to those aged 11–17 years. Ronen et al. [20] have developed a HRQOL instrument for younger children but it has yet to be validated.
Our Australian centre was the first to construct and publish a multifaceted epilepsy-specific scale for evaluating the HRQOL of children aged 4–18 years (Quality of Life in Childhood Epilepsy Questionnaire, QOLCE) [10]. The QOLCE was developed from an original questionnaire containing 91 items. Item analysis and validation led to a final questionnaire containing 76 items with 16 subscales covering five domains of life function: physical function, social function, cognition, emotional and behavioural well-being. Each QOLCE subscale demonstrated a high level of internal consistency reliability. The QOLCE subscales correlated strongly with similar subscales in an existing generic health outcome measure, the Child Health Questionnaire (CHQ). In addition, 12 of 16 subscales of the QOLCE correlated with a measure of seizure severity. However, this measure of seizure severity was rated by parents, and, therefore, was not independent from the ratings obtained from the QOLCE. The validity of an instrument is better established by correlating it with an independent measure of seizure burden. We recently demonstrated that the QOLCE was sensitive to the impact of localisation-related epilepsy syndromes compared with relatively benign syndromes such as childhood absence epilepsy and benign rolandic epilepsy [21].
The primary aim of the present study was to adapt the original Australian QOLCE for use in the American population. This involved examining the original pool of 91 items from which the QOLCE was developed to determine if translation was required from Australian to U.S. English. This is important because there are recognised conceptual and semantic differences in the English language depending on the country [22], [23], [24]. The validity of the adapted instrument was then evaluated by investigating internal consistency reliability, construct validity, and clinical sensitivity. The validation was based on the methodology used for the Australian validation study so that equivalence of the two forms could be considered. The validation sample was recruited from one of the largest paediatric epilepsy surgical centres in the world: the Miami Children’s Hospital (MCH), Florida, USA. Therefore, we also recruited a subset of families that had children who have undergone epilepsy surgery to assess the sensitivity of the QOLCE to postoperative seizure outcome.
Section snippets
Patients
Children with epilepsy and their parents were drawn from inpatient and outpatient services of the Comprehensive Epilepsy Center based at the Miami Children’s Hospital (MCH), Florida, USA. The MCH is one of the largest paediatric surgical centers in North America with a wide referral base throughout the United States. Inclusion criteria for the primary research sample required children aged 4–18 years who had their seizure disorder diagnosed by a neurologist (M.S.D., T.J.R., or J.A.L.) and had
Response rate and description of primary research sample
Of the 80 families who agreed to participate, 89% returned the questionnaire package. Therefore, the primary study sample was 71 parents of children with epilepsy (45 boys and 26 girls). Approximately 50% of families required a reminder phone call before returning the questionnaire package. The ages of the children ranged from 4 to 18 years inclusive (mean=11.17, SD=4.08), with the mean age of epilepsy onset being 5.13 years (SD=3.72). The severity of the seizures during the past 6 months was
Discussion
The Quality of Life in Childhood Epilepsy Questionnaire was the first epilepsy-specific instrument developed to assess the HRQOL of children aged 4–18 years [25]. The advantage of this instrument over other epilepsy-specific instruments is that it offers assessment of HRQOL in a broad age group of children and a representative number of functional life domains including physical function, social function, emotional well-being, behaviour, and cognition. To date this instrument has been evaluated
Acknowledgements
This research was supported by the National Health and Medical Research Council (NHMRC) and the Movement Disorder Foundation. Dr. Lawson was supported by the Bushell Travelling Fellowship from the Royal Australasian College of Physicians.
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