Scenario

A 6-year-old boy with a diagnosis of focal onset seizures from focal cortical dysplasia is still having daily seizures after having tried two different antiepileptic medications. You see him in your local paediatric/epilepsy clinic after the tertiary paediatric neurology team refer him to the Children’s Epilepsy Surgery Service (CESS). He and the family have been given information about the CESS but are worried about the process, the time it may take and what is involved. They have heard from other families that it may involve a lot of travel for appointments, a lot more investigations and ‘big surgery’. In clinic the family ask you, ‘What will it all be like?’.

Structured clinical question

For a child with refractory epilepsy referred to the CESS, what is the patient and/or family experience on the pathway?

Papers from other countries were included in analysis to broaden the range and potential quality of included papers, though the analysis was with the UK CESS pathway in mind.

Search

Secondary sources searched: no results identified.

Primary searches on Healthcare Databases Advances Search, PubMed, MEDLINE, PsychINFO, Embase and the British Nursing Index found 795 results, 15 papers selected for review and 4 included (see online supplementary appendix 1). Of these four papers, three papers1–3 were available, and one was a conference abstract that was not available in full text.4 …