Book Review

Current Problems in Epilepsy: 16. Comprehensive Care for People with Epilepsy. M. Pfafflin, R. T. Fraser, R. Thorbecke, U. Specht, and P. Wolf, eds. John Libbey & Company Ltd., Eastleigh, United Kingdom, 2001, 365 pages. Multiple authors make this a very good book that addresses critical issues in epilepsy care. It is increasingly clear that “medical” treatment focused only on seizure control fails to deal with many of the needs of people with epilepsy. Comprehensive care must address concerns such as mood, self-esteem, personality, cognition, memory, social skills, employment, living arrangements, and social stigma. All of these issues are related to seizures, but we learn that they are not resolved simply by controlling the seizures. Traditional doctor–patient interactions seem rarely to solve the most important issues in the lives of people with epilepsy. If you wonder how to do this better, then this book will help by illustrating a variety of new approaches by experts in many countries. Of course, a single, detailed prescription cannot be offered, but the authors make it clear which approaches are evidence based, which have prima facie validity, and which are speculative. Although the writing is clear, the book demands careful attention and probably is best read only a chapter or two at a time. The book has four sections, each with multiple chapters. Each section begins with a short summary. The first section documents the need for comprehensive care; the second, interventions in comprehensive care; the third, examples of special services and programs; and the fourth, current issues. First we learn about many studies that support the need for comprehensive care for patients both with and without seizure control. Patients with poor seizure control have the greatest difficulty, but major social problems occur in ≥20% of those with complete seizure control. Evidence suggests that patients often have misconceptions about epilepsy, and we liked the concept that physicians are often “noncompliant” in providing adequate sources of information. A checklist is offered to prompt physicians to be more compliant. A case is made that care for people with epilepsy must have a major “nonphysician” side. The issues to be addressed are complex, and a new scale for measurement of the multidimensions of epilepsy problems (PESOS) is introduced along with evidence of its sound psychometric properties. The full questionnaire is presented in the text. The second section contains a thoughtful review of nonpharmacologic treatment for seizures, in which it is argued that randomized trials are not needed; we disagree. The chapter on seizure-directed psychotherapeutic interventions is bluntly honest about the quality of the current clinical literature but does conclude that such treatments should be considered for improved seizure control in intractable patients, especially because of possible positive effects on other aspects of the person's life. Some patients develop good coping strategies for the emotional disturbances that may accompany epilepsy. An excellent table outlines ways of assessing these coping strategies. A very straightforward and optimistic chapter on psychiatric treatment offers a therapeutic approach for each of the most common epilepsy-associated psychiatric disorders. It is refreshing to see recommendations for a mixture of psychotherapy plus medications, not just medication. The management of dissociative seizures (“pseudo seizures”) is addressed in detail, but we were disappointed to find no mention of the rate of successful treatment for this difficult problem. Patients with epilepsy complain a lot about memory problems. An outstanding chapter explores the relation between these complaints and neuropsychological findings. Memory complaints are highly related to mood, and problems with verbal fluency are much more troublesome to patients than are other types of memory deficits. A very practical chapter on neuropsychological compensatory strategies for memory deficits includes a good discussion about the difficulties in measuring success. Many simple suggestions could be useful even to neurologists working in isolation. Taking medication regularly is big problem in any chronic disorder. Compliance is well discussed, with a clear outline of the consequences of poor compliance and simple ways to improve it. This chapter is the most “evidence based” in the book. After epilepsy surgery, there is always tremendous optimism. Once the seizures stop, all will be well. The book emphasizes that the rehabilitation process after epilepsy surgery is slow, and ≥5 years should elapse before giving up on employment and independent living, two measures that have become the holy grail of long-term outcome. We learn that neither is easy to define or understand. The authors insist that epilepsy surgery be undertaken with realistic goals. We liked the idea of “learned resourcefulness” rather than “learned helplessness.” Several chapters are devoted to programs to improve patient and partner information about epilepsy. All of these programs involve group learning and are directed to normally intelligent adults, mild to moderately intellectually handicapped adults, and children. One program has been objectively assessed with testing before and after intervention (6 months and 5 years), and it was successful. In two chapters, case studies illustrate the potential impact of comprehensive care. One series takes us through the complexity of what it takes to get some people back to work. Those who were working before the onset of epilepsy have the best prognosis. Especially important (and infrequently attempted from a neurology practice) are efforts to influence flexibility in employers. Programs of comprehensive care are delivered in many different settings in different countries. A visiting consultation service for patients in residential care in Germany is described. In the Netherlands, there is a 5-day program for patient and partner. In Japan, a unique program has the patient go to work during the day, but in the evening, stay in a “night program,” which provides group and individual rehabilitation services. Public education programs in Israel and Ireland seem relatively independent of the “medical” system. In another program, group “psychotherapy” is offered to mothers of children with difficult epilepsy. Many of these women have put their own lives on hold. All of these programs cost money. Three chapters are devoted to the complexity of measuring the costs of epilepsy and different models of care. Unfortunately the authors find that current methods are inadequate for a disorder as diverse as epilepsy. Who should read this book? We think that all trainees who will be spending much of their time in epilepsy care will benefit, at least to sensitize them to the simple truth that manipulating medications is insufficient treatment. Physicians and other health care professionals in practice settings that do not offer comprehensive care also would benefit by gaining insight into what is possible for their patients. Those in comprehensive care systems or academic practice can review the evidence of program efficacy to generate more understandable, scientific ways of assessment. But to all readers, we warn that you must put aside considerable time to digest the information in this very good book.

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