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  • Development and pilot testing of a parent-reported health-related quality of life measure for children on the ketogenic diet: The KetoQoL

    Author(s)
    Barwick, Katie
    Parker, Tamara
    Murphy, Nicole
    Todd, Alwyn
    Leveritt, Michael
    Wilkinson, Shelley A.
    Griffith University Author(s)
    Leveritt, Michael
    Murphy, Nicole
    Parker, Tamara
    Todd, Alwyn S.
    Year published
    2017
    Metadata
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    Abstract
    Aim: The aim of the present study was to develop a parent-reported tool that will measure health-related quality of life (HRQoL) in children following ketogenic diet (KD) therapies for refractory epilepsy once it has been pilot tested and analysed. Methods: Parents of children following KD therapies for epilepsy were recruited through a public hospital in Queensland, Australia, in 2012 and 2014. Qualitative semistructured interviews were conducted in 2012 with 13 parents who described changes seen in their child's HRQoL while on the KD. A quality of life tool (QoL) was developed by adapting the Quality of Life in Childhood ...
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    Aim: The aim of the present study was to develop a parent-reported tool that will measure health-related quality of life (HRQoL) in children following ketogenic diet (KD) therapies for refractory epilepsy once it has been pilot tested and analysed. Methods: Parents of children following KD therapies for epilepsy were recruited through a public hospital in Queensland, Australia, in 2012 and 2014. Qualitative semistructured interviews were conducted in 2012 with 13 parents who described changes seen in their child's HRQoL while on the KD. A quality of life tool (QoL) was developed by adapting the Quality of Life in Childhood Epilepsy tool based on results and themes analysed from the interviews. The KetoQoL was pilot tested with 18 parents recruited in 2014. Interrelationships between variables and questions were explored with exploratory factor analysis (EFA) to determine which questions had the greatest effect on QoL. Results: The first iteration of the KetoQoL consisted of five main domains: physical, cognitive, social, intrapersonal and effects on the family. The domains were subdivided into 18 variables, totalling 54 items. EFA demonstrated that items from the physical and effects on the family domains had the greatest effect on QoL. Conclusions: KetoQoL is an HRQoL tool developed using a range of methods and assessed for both face and content validity. Further testing of KetoQoL is required to refine and confirm the factors. This work will enhance the evaluation of treatment effectiveness in children with epilepsy following the KD.
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    Journal Title
    Nutrition & Dietetics
    DOI
    https://doi.org/10.1111/1747-0080.12348
    Note
    This publication has been entered into Griffith Research Online as an Advanced Online Version.
    Subject
    Nutrition and dietetics
    Nutrition and dietetics not elsewhere classified
    Health services and systems
    Public health
    Food sciences
    Publication URI
    http://hdl.handle.net/10072/345132
    Collection
    • Journal articles

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