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
TABLE 7–1.UK EXAMPLES OF GUIDELINES DEFINED BY SEIZURE, TYPE OF EPILEPSY OR TREATMENT |Favorite Table|Download (.pdf) TABLE 7–1. UK EXAMPLES OF GUIDELINES DEFINED BY SEIZURE, TYPE OF EPILEPSY OR TREATMENT
First afebrile seizure6
Specific epilepsy types, e.g., infantile spasms8
For particular treatments (e.g., ketogenic diets, VNS adjustments, drug regimes)
For investigations (e.g., melatonin for sleep EEGs)
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.