Another publication from our CHOICE research on measuring core outcomes for children with epilepsy

We are pleased to announce another publication from our Core Health Outcomes In Childhood Epilepsy (CHOICE) research. This new paper describes how we explored potential for measuring core outcomes for children with epilepsy using existing condition-specific health-related quality of life questionnaires.

We proposed a top 10 core outcomes for children with epilepsy rated as most important by young people with epilepsy, families and clinicians: seizures, sleep, social functioning, mental health, cognition, physical functioning, behaviour, adverse events, family life and global quality of life.

Also in previous work we identified 11 questionnaires that measure health-related quality of life specifically for children with epilepsy. We examined evidence of how robustly they measure and concluded there are two leading questionnaires with more evidence of robust measurement.

However, it is also important to consider if a questionnaire is measuring those aspects of health that are of most importance to children with epilepsy and their families.

In the new paper we describe how we mapped what aspect of health is being asked about in each questionnaire with reference to the core set of outcomes. We also provide feedback from children and parents in our family advisory panel on the two leading questionnaires.

The full text is freely available (open access) in the journal Epilepsy and Behavior

This research is part of the CASTLE Study funded by National Institute for Health Research Programme Grants for Applied Research (RP‐PG‐0615‐20007). We also acknowledge support from the NIHR Applied Research Collaboration South West Peninsula (PenARC). The views and opinions expressed in this paper are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

Crudgington H, Collingwood A, Bray L, Lyle S, Martin R, Gringras P, Pal DK, Morris C. (2020). Mapping epilepsy-specific patient-reported outcome measures for children to a proposed core outcome set for childhood epilepsy. Epilepsy & Behavior, 112 https://doi.org/10.1016/j.yebeh.2020.107372