Quality improvement in the management of people with epilepsy and intellectual disability: the development of clinical guidance

ABSTRACT

Introduction: This clinical guidance looks at the specific concerns of delivery of medical treatment for people with epilepsy and intellectual disability (ID). People with ID have not been included in licensing drug trials of AEDs. However, this population has an over-representation of seizure comorbidity, treatment resistance, and polypharmacy while also being vulnerable to not having their views considered.

Areas covered: This review summarizes the current most robust evidence available for the use of licensed AEDs in people with epilepsy and ID. The article provides practical evidence-based clinical information to help prescribers choose the most appropriate AED from the drugs discussed. The article highlights other important individualized factors to consider before initiating or changing antiepileptic medication.

Expert opinion: A ‘traffic light’ coding system is applied to commonly used AEDs based on the level of evidence and expert clinical experience. Managing epilepsy in the ID population requires specialist care. Treatment plans need to be holistic and tailored to accommodate an individual’s comorbidities, concurrent medications, general health, social and environmental status. There is a need for large quality trial data to assess the most suitable AEDs on seizure control and quality of life in this population with complex needs.

KEYWORDS:

• Epilepsy
• seizures
• anti seizure drugs
• anti epileptic drugs
• intellectual disability
• learning disability
• neurodevelopmental disorders
• multimorbidity

Declaration of interest

L Watkins was deputy editor for the national (Royal College of Psychiatrists) RCPsych report CR 206 which is heavily referred to in the current submission. M Kerr was involved in the development of RCPsych report CR 203 which is heavily referred to in the current submission. M Scheepers was involved in the development of RCPsych report 203 and RCPsych report CR 206 both of which are heavily referred to in the current submission. He has given two talks on CR203 for which UCB has paid his NHS Trust. He has also attended an Epilepsy masterclass, with an overnight stay, sponsored by UCB. K Courtenay is the current chair of the Faculty of Intellectual Disability of RCPsych. R Shankar is a principal stakeholder of the ‘SUDEP and Seizure Safety Checklist’, a developer of EpSMon. R Shankar is also the Academic Secretary for the Intellectual Disability Faculty of the Royal College of Psychiatrists (RCPsych). He has chaired both the National College Reports CR203 AND 206 which is heavily referred to in the current submission. R Shankar has received institutional and research support and personal fees from LivaNova, UCB, Eisai, Veriton Pharma, Bial and Desitin outside the submitted work. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

Reviewer disclosures

Peer reviewers on this manuscript have no relevant financial or other relationships to disclose.

Article highlight

• The clinical guideline provides a practical approach to medical treatment for people with epilepsy and intellectual disability.

• The current evidence base has been used alongside expert clinical opinion to develop a user-friendly ‘traffic light’ coding system for common antiepileptic drugs.

• Other factors, which may influence drug choice, are highlighted to ensure treatment is individualized.

• People with epilepsy and intellectual disability are a complex and diverse population with a wide range of co-morbid influencing factors that require consideration.

• The current evidence base for the efficacy and tolerability of antiepileptic drugs in the intellectual disability population is limited and robust investigations are needed.

Additional information

Funding

This manuscript has not been funded.