Core Health Outcomes In Childhood Epilepsy (CHOICE)

The Core Health Outcomes In Childhood Epilepsy (CHOICE) study has developed the first ever core outcome set for childhood epilepsy research. We have reached consensus agreement on which aspects of health and quality of life are most important to measure for children with the most common type of epilepsy. We used methods advocated by the COMET Initiative.

Key points:

  • There was no established core outcome set for childhood epilepsy
  • Consensus‐based methods were used to rate the importance of different outcomes in rolandic epilepsy; this included two rounds of a Delphi survey and a face‐to‐face meeting that included young people with rolandic epilepsy, parents, and various professionals
  • We identified 38 outcomes across 10 domains that contributed toward a core outcome set for use in epilepsy research

The CHOICE study has four publications which are freely available:

1. Core Health Outcomes in Childhood Epilepsy (CHOICE): protocol for the selection of a core outcome set
2. Core Health Outcomes in Childhood Epilepsy (CHOICE): Development of a core outcome set using systematic review methods and a Delphi survey consensus
3. Epilepsy-specific patient-reported outcome measures of children’s health-related quality of life: A systematic review of measurement properties
4. Mapping epilepsy-specific patient-reported outcome measures to a core outcome set for childhood epilepsy

To read Plain English summaries of the work please use the links below
1.Plain English research summary of  the Core Outcome Set work 
2.Plain English research summary of the PROM review work

 

Click here to view an illustration of CHOICE  

 

The CHOICE work has been presented at the below international conferences
– The British Paediatric Neurology Association (BPNA) annual conference, 2018
– The 13th European Congress on Epileptology (ECE) in Vienna, 2018
– The Core Outcome Measures in Effectiveness Trials (COMET) annual meeting in Amsterdam, 2019
– European Academy for Childhood Disability (EACD) conference in Paris 2019
– American Epilepsy Society (AES) November 2020 Virtual Conference

To view the latest poster click here

We included families of children with rolandic epilepsy, clinicians and other people working with children with rolandic epilepsy (sometime called benign epilepsy with centro-temporal spikes or BECTS) in an online survey to select which aspects of health and quality of life should be measured in future childhood epilepsy research. We have established a core outcome set of 38 outcomes across the following 10 domains: Seizures, Sleep, Social functioning, Mental health, Cognition, Physical functioning, Behaviour, Adverse events, Family life, Global Quality of life.

Who are we & what did we do?

The CHOICE study was coordinated by researchers mainly based at King’s College London and The University of Exeter Medical School. The team involved clinicians, researchers and parents of children with epilepsy from England and Wales. An ‘outcome’ is some aspect of a person’s health that is measured to compare treatments for specific health conditions. Most research in epilepsy focuses on measuring the effect of anti-epileptic medication on seizures as an outcome. However, we think it’s also important to include other outcomes too that might be affected by seizures or anti-epileptic medication such as a child’s learning, sleep, mental health, school and social life. We asked which outcomes parents, young people and professionals thought were more important to measure for children with rolandic epilepsy (also known as benign childhood epilepsy with centrotemporal spikes). To do this we conducted an online Delphi Survey.

Definition of a core outcome

Further information

How will we measure the outcomes?

We have recently published a systematic review of all the existing questionnaires, also known as Patient-Reported Outcome Measures (PROMs), that measure health-related quality of life (HRQoL) in childhood epilepsy. We recommend two leading candidate PROMs for
use in childhood epilepsy research. We have also mapped the items from those questionnaires to our core outcome set for childhood epilepsy research. We also consulted with parents and children on the acceptability of some of the questionnaires. This work will help to inform future researchers about which questionnaire to pick for a specific purpose.

Publications:
Epilepsy-specific patient-reported outcome measures of children’s health-related quality of life: A systematic review of measurement properties
Mapping epilepsy-specific patient-reported outcome measures to a core outcome set for childhood epilepsy research

Plain English Summaries:
Plain English research summary of patient-reported outcome measure work

Take part in the this study

This study is currently closed to recruitment and has been published. Please look at our other projects if you are interested in taking part in CASTLE.