Epilepsy guidelines mean different things to different people, probably related to the wide variety of guidelines that are in existence. This chapter discusses the role that clinical guidelines can potentially play in contributing to the improved care of children and young adults with seizures and epilepsy. Examples from the United Kingdom are used to illustrate how guidelines can also have a wider role in supporting the development of services as part of a wider quality improvement agenda.

A clinical guideline can be thought of simply as set of recommendations designed to help a health professional deliver best practice. Field and Lohr provided a more formal definition stating that clinical practice guidelines are “systematically developed statements to assist practitioner and patient decisions about appropriate health care for specific clinical circumstances.”¹ The Scottish Intercollegiate Guidelines Network (SIGN) adds the context “they are intended as neither cookbook nor textbook but, where there is evidence of variation in practice which affects patient outcomes and a strong research base providing evidence of effective practice, guidelines can assist healthcare professionals in making decisions about appropriate and effective care for their patients.² The challenge, therefore, for the epilepsies is translating the existing research base and range of professional opinions into effective guidelines. These guidelines must serve a population with a heterogeneous range of complex evolving diagnoses who interact with many different types of service in both hospital and community settings.

Epilepsy guidelines can vary in terms of their aims and scope, production method, subject matter, and subsequent implementation. Each will be considered in turn. In the first instance, subject matter may define the target of the guideline, in epilepsy this may be by seizure or syndrome, or by treatment. Illustrative UK examples are given in Table 7–1; a similar diversity is seen among the American Academy Practice Parameters.³

Often the aims and scope are of vital importance as they define the guideline’s purpose and control the context in which the guideline should be used. Guidelines even for a given disease or problem can therefore vary considerably depending on this purpose and the intended user, healthcare setting and patient. This is important as ideally the role of a guideline should be intrinsically defined. These variations in aims and scope are illustrated in Table 7–2.

An example how these differences may manifest is illustrated using guidelines developed for the management of “status epilepticus.” A guideline for “status epilepticus,” using a standard definition of status as a convulsive seizure lasting longer than 30 minutes, is better framed operationally as a guideline for prolonged seizures such that steps can be recommended sooner than the 30-minute definition. If a guideline for management of prolonged convulsions is designed only for professionals in an Emergency Department, then it is likely to be inappropriate for paramedics on the way to hospital or professionals wishing to treat a child starting to seize on a pediatric ward. If the guideline is designed to manage the child’s clinical course across multiple healthcare settings, for example, from the start of their seizure at school to intensive care, then the roles and actions for different professionals along the patient’s course need to be explicit. It is easy to see given this how guidelines can have limited or detrimental effects if they are used in inappropriate patients or healthcare settings.

In an audit of the management of status epilepticus in North London, Chin et al highlighted significant deviation from well-established national guidelines.⁹ The likelihood of an intensive care admission was associated with excessive numbers of doses of benzodiazepines and delayed administration of phenytoin. One response to these audit findings is to produce guidelines with a scope defining how prehospital and hospital teams can link their care, making the guideline more pragmatic, aiding timely, and accurate administration of phenytoin. The Children’s Epilepsy Workstream in Trent (CEWT) and North Central London Epilepsy Network for children have produced guidelines that account for these issues.^10,11

It is increasingly recognized that the production method of a guideline is an important determinant of its quality and acceptance by users. Guideline production should ideally involve all relevant stakeholders and use transparent and rigorous mechanisms for translating the evidence base and range of opinions into consensus recommendations. The user should be easily able to understand the “origins” of a guideline they may be using and the “weighting” of any recommendations made. The process of achieving consensus is of particular relevance in epilepsy as often the available evidence base is insufficient to provide comprehensive recommendations. The Delphi method, AGREE (Appraisal of Guidelines Research and Evaluation),¹² and consensus conferences¹³ are examples of such approaches. Some of the difficulties of this process when applied to epilepsy are illustrated by a subsequent appraisal of the NICE guidelines for the management of the epilepsies.¹⁴