Abstracts

Rationale: Epilepsy is associated with a significantly poor Quality of Life (QoL) compared to healthy individuals. The aim of all medical interventions is to improve health outcomes and maximise QoL. Understanding how treatments impact on QoL is useful in improving clinical practice. This survey aims to understand the QoL of children with epilepsy, from a parental perspective, focusing on the impact of Anti-Epileptic Drugs (AEDs) and Ketogenic Diet Therapy (KDT). Methods: A survey was constructed consisting of mixed open and closed questions and completed by participants recruited according to specific criteria via specialist online forums and the UK charities, Matthews Friends and The Daisy Garland. These criteria required responders to be parents of children with epilepsy. Results: 51 responses were received from parents of children with refractory epilepsy, 72.5% (37/51) of which have experienced KDT. 42% (26/51) of responders rated their child’s QoL as poor or very poor.Only a quarter (13/51) of parents reported an improvement in QoL with the introduction of anti-epileptic drugs (AEDs). 82% (42/51) reported negative side-effects following introduction of AEDs, which impacted the whole family. Over half (31/51) reported that doctors didn’t recognise the full extent of side-effects. Two thirds (34/51) of parents reported side-effects affecting poor attention span, low energy levels, poor memory and sleepiness. 75% (38/51) reported personality changes in their child and 39% (20/51) reported speech deterioration.For those who had experience of the KDT, despite 50% (19/37) of responders being concerned about the amount of work KDT involves, 49% (18/37) of parents reported that KDT improved their child’s QoL. Over half (20/37) reported an improvement in those same measures: attention, energy levels and memory, with less anxiety, sadness and depression. 53% (20/37) felt KDT had fewer adverse effects compared to AEDs. Conclusions: This survey showed QoL to be poor in almost half of responders, which mirrors other publications. In addition, the majority of parents surveyed, reported AEDs had a negative impact on their child’s QoL. KDT can be perceived by the medical community as difficult or unpalatable, but despite the challenging nature of KDT, almost half of parents reported an improvement in QoL. In view of these potential benefits on QoL, KDT should be considered earlier as an effective management option for drug resistant epilepsy.The survey also highlights the importance of using QoL measures in clinical practice to evaluate treatment efficacy and inform treatment decisions. A specific tool for measuring QoL in refractory epilepsy in clinical practice is required.The survey results have limitations as the target population surveyed could have an inherent bias for non-pharmacological treatments and the sample size is small. Funding: No funding