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Epilepsy: HELP
Articles by Tamara Parker
Based on 2 articles published since 2010
(Why 2 articles?)

Between 2010 and 2020, T. Parker wrote the following 2 articles about Epilepsy.
+ Citations + Abstracts
1 Article Development and pilot testing of a parent-reported health-related quality of life measure for children on the ketogenic diet: The KetoQoL. 2017

Barwick, Katie / Parker, Tamara / Murphy, Nicole / Todd, Alwyn / Leveritt, Michael / Wilkinson, Shelley A. ·Department of Nutrition and Dietetics, Mater Health Services, Brisbane, Queensland, Australia. · Mater Research Institute, University of Queensland, Brisbane, Queensland, Australia. · Department of Dietetics and Foodservices, Lady Cilento Children's Hospital, Brisbane, Queensland, Australia. · School of Allied Health Sciences, Griffith University, Gold Coast, Queensland, Australia. · Griffith Health Institute, Griffith University, Gold Coast, Queensland, Australia. · School of Human Movement Studies, University of Queensland, Brisbane, Queensland, Australia. ·Nutr Diet · Pubmed #29130289.

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 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.

2 Article Discussing sudden unexpected death in epilepsy: Are we empowering our patients? A questionnaire survey. 2016

Keddie, S / Angus-Leppan, H / Parker, T / Toescu, S / Nash, A / Adewunmi, O / Liu, Rsn. ·Department of Neurology, National Hospital of Neurology and Neurosurgery, London WC1N 3BG, UK. · Department of Neurology, Royal Free Hospital, London NW3 2QG, UK; Neurosciences, University College London, London, UK. · Department of Neurology, Queen Square Hospital, London WC1N 3BG, UK. · Department of Neurology, Royal Free Hospital, London NW3 2QG, UK. ·JRSM Open · Pubmed #27688898.

ABSTRACT: OBJECTIVE: To examine patient knowledge about sudden unexpected death in epilepsy (SUDEP) compared to other risks in epilepsy. To explore patients' experiences surrounding SUDEP disclosure and opinions on how information should be delivered. DESIGN: A cross-sectional questionnaire. SETTING: Royal Free Hospital, London outpatient epilepsy clinics. PARTICIPANTS: New and follow-up patients attending epilepsy clinics at a London teaching hospital over six months. Patients identified as being at risk of suffering negative emotional or psychological consequences of SUDEP discussions were excluded. MAIN OUTCOME MEASURES: Patient knowledge about epilepsy risks; patient opinion regarding source, timing and delivery of SUDEP information; impact on health seeking behaviour. RESULTS: Ninety-eight per cent of patients were aware of medication adherence, 84% of factors influencing seizure frequency, 78% of driving regulations, 50% of SUDEP and 38% of status epilepticus; 72% of patients felt that SUDEP information should be given to all patients. Preferences for timing of SUDEP discussions varied between those wanting information at diagnosis (40%) and those preferring to receive it after three clinic appointments (18%) to avoid information overload at the first consultation. Emotional responses (48% positive, 38% negative) predominated over measurable behavioural change following SUDEP discussions. CONCLUSIONS: Less than half the patients knew about SUDEP and status epilepticus. Although the majority of patients with epilepsy wish to be informed about SUDEP early on in their diagnosis, information must be delivered in a way that promotes patient knowledge and empowerment.