Common experiences of patients following suboptimal treatment outcomes: implications for epilepsy surgery.

Few studies have investigated the patient experience of unsuccessful medical interventions, particularly in the epilepsy surgery field. The present review aimed to gain insight into the patient experience of seizure recurrence after epilepsy surgery by examining the broader literature dealing with suboptimal results after medical interventions (including epilepsy surgery). To capture the patient experience, the literature search focused on qualitative research of patients who had undergone medically unsuccessful interventions, published in English in scholarly journals. Twenty-two studies were found of patients experiencing a range of suboptimal outcomes, including seizure recurrence, cancer recurrence and progression, unsuccessful joint replacement, unsuccessful infertility treatment, organ transplant rejection, coronary bypass graft surgery, and unsuccessful weight-loss surgery. In order of frequency, the most common patient experiences included the following: altered social dynamics and stigma, unmet expectations, negative emotions, use of coping strategies, hope and optimism, perceived failure of the treating team, psychiatric symptoms, and control issues. There is support in the epilepsy surgery literature that unmet expectations and psychiatric symptoms are key issues for patients with seizure recurrence, while other common patient experiences have been implied but not systematically examined. Several epilepsy surgery specific factors influence patient perceptions of seizure recurrence, including the nature of postoperative seizures, the presence of postoperative complications, and the need for increased postoperative medications. Knowledge of common patient experiences can assist in the delivery of patient follow-up and rehabilitation services tailored to differing outcomes after epilepsy surgery.

Azo dyes and the blood-brain barrier: Robert Aird's novel concept in chronic neurological disease (1903-2000).

The well-established medical involvement of derivatives of the azo dye industry lent credibility to the 1935 announcement by Stanley Cobb of the use of vital brilliant red dye as an anticonvulsant. Although in the fullness of time clinical experience would discard this concept, nevertheless it was to give rise to Robert Aird who posited that the mechanism of action of this dye was due to its ability to decrease the permeability of the blood-brain barrier. In a very prolonged exploration of this concept, Aird concluded that blood-brain barrier permeability underlay the causation of a long list of chronic neurological conditions--a concept that was eventually abandoned. This article examines the details and the effects of this concept and its impact upon neurology.

Pioneering concepts in epileptology: the cerebral dysrhythmia of Frederic Gibbs (1903-92) and William Lennox (1884-1960).

The development of the electroencephalogram and its use in the study of epilepsy supplied the research team of William Lennox and Frederic (Frederick) Gibbs at Harvard University with an entirely new method of studying the epileptic activity of the brain. The abnormal activity, thought to be a "dysrhythmia", seemed to indicate a central role for inheritance in this condition, and there seemed a more considerable penetration of inheritable epileptic tendency in the community than at first thought. Lennox, who had a long-held interest in eugenics, felt that further study was needed and this he undertook in his famous "Twin Series" exploring epilepsy in identical and non-identical twin pairs. Frederic and Erna Gibbs, however, went on to study the electrical activity accompanying various clinical seizure types. These were the early days of electroencephalography, and mistaken over-emphasis given to various forms of non-specific slower components introduced conceptual errors in both areas of research. However, the overall results of this pioneering research provided very significant advances in epileptology.

The idea of epilepsy as a disease per se.

In the 1850s Delasiauve and Russell Reynolds independently introduced the idea that the previously more inclusive concept of "epilepsy" should be restricted to that of an idiopathic disease manifesting epileptic seizures not caused by detectable brain pathology. This idea was rather widely accepted, though with some modification, over much of the next century. However there was increasing opposition to the idea from those, including John Hughlings Jackson, who perceived that all epileptic seizures must be symptoms of underlying brain disease. With increasing identification of structural brain pathology in what had been regarded as instances of idiopathic epilepsy, the latter view has increasingly prevailed.

The threshold of the new epileptology: Dr Lennox at the London Congress, 1935.

By the time that Dr William Lennox presented his discovery of the diagnostic electrical signature of brain electrical activity in epileptic seizures at the 2nd International Neurology Congress, held in London in 1935, research in epileptology had become mired in conceptual confusion. Not only had the vain quest for extracerebral seizure triggers resulted in decades of negative research, but outré theories such as autointoxication and psychoanalysis had severely damaged and confused the conceptual approach to this condition. Lennox and the Harvard team, in applying the novel technology of electroencephalography helped to clear up this confusion radically. His landmark contribution and the confusion into which epilepsy research had been diverted at that time, is worthy of examination--for this was indeed the threshold of new era of epileptology.

Profiles of psychosocial outcome after epilepsy surgery: the role of personality.

PURPOSE: We have previously found that the developmental time frame of epilepsy onset influences adult personality traits and subsequent adjustment to intractable seizures. In the same cohort of patients we now investigate the influence of these factors on psychosocial outcome after surgical treatment. METHODS: Fifty-seven adult patients with focal epilepsy were prospectively assessed before and after surgery. Measures of psychosocial outcome included mood, health-related quality of life (HRQOL), and psychosocial adjustment, collected longitudinally at 1-, 3-, and 12-months after surgery. RESULTS: Patients with high neuroticism and low extraversion were predisposed to greater depression after surgery. More than 70% of patients with high neuroticism also reported disrupted family dynamics and difficulties adjusting to seizure freedom. The latter was associated with changes in self-identity that increased over time. Patients with epilepsy onset before or during the self-defining period of adolescence reported the greatest perceived self-change after surgery that had positive effects for HRQOL. DISCUSSION: Psychosocial outcome after epilepsy surgery appears intrinsically linked to a change in self and a transition from chronically sick to well. The development of personality traits and self-identity in the context of habitual seizures can impact psychosocial outcome and the extent of self-change reported after surgery, and paradoxically, can concur more beneficial effects.

Personality development in the context of intractable epilepsy.

OBJECTIVES: To investigate the developmental time frame of epilepsy onset on adult personality traits of neuroticism and extraversion and to consider their role in adjustment to intractable epilepsy. DESIGN: Prospective, preoperative and postoperative survey of the psychological and psychosocial effects of intractable epilepsy and its surgical treatment. Data from the preoperative phase are reported. SETTING: Comprehensive Epilepsy Program (CEP), Austin Health. PATIENTS: Sixty adult patients with focal epilepsy undergoing inpatient monitoring. Groups of patients with epilepsy onset in different developmental periods were empirically derived and compared with each other and with normative personality data from 1571 cases. MAIN OUTCOME MEASURES: Scores on the Eysenck Personality Questionnaire Revised-Short Form; the Beck Depression Inventory-II; the State-Trait Anxiety Inventory (state form); and the Austin CEP Interview, a semistructured interview providing in-depth psychosocial assessment. RESULTS: Patients with onset of epilepsy during the self-defining period of adolescence had higher neuroticism scores relative to normative data (95% confidence interval, 0.16 to 3.57) and other patients (-0.46 to -5.63). High neuroticism, particularly when accompanied by lower extraversion, predisposed to poor adjustment to intractable epilepsy as reflected by impaired mood (P < .01) and difficulties with family functioning (48% of patients). CONCLUSIONS: These data provide initial evidence that onset of chronic neurologic illness in adolescence influences the development of adult personality traits. We also found a relationship between personality and adjustment to chronic epilepsy. The findings are relevant to the provision of psychologically informed neurologic care.

Julius Althaus (1833--1900). Neurologist and cultural polymath; founder of Maida Vale Hospital.

Born, educated and trained in Germany, Julius Althaus migrated to London at the start of a long career in neurological medicine. He was a voluminous writer on a wide range of topics in both general medicine and neurology, especially electrotherapy. In addition, his textbooks form a snapshot of current concepts of great historical interest in areas such as epilepsy and cerebrovascular disease. He was an early and very successful author in the field of popular science journalism. His writing also covered many topics of general interest and his readership was both professional and public alike. His multilingual skills and Continental derivation provided him with international connections, placing him at the advancing edge of neurological development. Both Althaus and his wife Anna were superb musicians, the centre of a wide circle of friends and like-minded acquaintances, and contributed substantially to the cultural life of London. Althaus played a major, almost single-handed role in the founding and development of the Maida Vale Hospital for Nervous Diseases. He left behind a great legacy of both culture and neurology for his adopted country.

Edward Henry Sieveking and the demise of essential epilepsy.

Edward Henry Sieveking, eminent London physician of Victorian times, is best known as the speaker at the historic meeting at which the chairman, Sir Charles Locock, seem to overshadow him in announcing the introduction of bromide--the first effective anti-convulsant. But in fact Sieveking had announced a most important conceptual advance in epileptology--the demise of "essential epilepsy". In addition his book, published soon after and based upon his lecture, is an important historical resumé of Victorian era concepts and management of epilepsy. His important contributions to the understanding and management of this condition are discussed herein.

The burden of normality: a framework for rehabilitation after epilepsy surgery.

This paper describes a conceptual framework that generates a modus operandi for rehabilitation after epilepsy surgery derived from regular longitudinal and prospective follow-up of patients and families. The framework focuses on patient experiences of undergoing surgery placed within the context of the family and broader community. It adopts a holistic view of patient care to understand the complex interactions between neurobiological and psychosocial factors that determine surgical outcome in the eyes of the patient, family, and clinical team. It emphasises the importance of anticipating postoperative adjustment issues using a preventive treatment approach.

Psychosocial adjustment following relief of chronic narcolepsy.

BACKGROUND AND PURPOSE: No previous research has examined the psychosocial adjustment of chronic narcolepsy patients following efficacious pharmacotherapy. In contrast, considerable research has examined the process of psychosocial adjustment following surgical relief of chronic epilepsy. This process can manifest as a clinical syndrome, the 'burden of normality', comprising psychological, behavioural, affective and sociological features. The aim of the present study was to characterise the process of psychosocial adjustment of patients with successfully treated narcolepsy and to explore the applicability of the burden of normality. PATIENTS AND METHODS: Thirty-three narcolepsy patients and 31 epilepsy surgery patients were recruited through routine outpatient follow-up at the Austin Hospital in Melbourne. All patients underwent in-depth, qualitative psychosocial assessment using a well-validated semi-structured interview, the Austin CEP Interview. They were also administered quantitative measures of anxiety (State Trait Anxiety Inventory) and depression (Beck Depression Inventory-II). RESULTS: Narcolepsy patients spontaneously reported similar themes of post-treatment adjustment to successfully treated epilepsy patients, including symptoms of the burden of normality. Chi-squared analyses revealed that the two groups differed only on disease-specific factors, reflecting the later diagnosis and treatment of narcolepsy (P<0.05). CONCLUSION: The results support a general model of adjustment following successful treatment of chronic neurological illness, as the patient discards perceptions of illness and behaviours associated with being 'sick' and learns to become 'well'. Recognition of the burden of normality has important clinical implications for maximising the post-treatment care and outcome of narcolepsy patients.

Neurological control of human sexual behaviour: insights from lesion studies.

We review the human literature examining the effects of neurological insult on human sexual behaviour. We provide a synthesis of the findings to date, and identify key brain regions associated with specific aspects of human sexual behaviour. These include subcortical and cortical regions, with the mesial temporal lobe and the amygdala in particular being a crucial structure in the mediation of human sexual drive.

W. Grey Walter, pioneer in the electroencephalogram, robotics, cybernetics, artificial intelligence.

With the announcement by William Lennox at the 1935 London International Neurology Congress of the use of electroencephalography in the study of epilepsy, it became evident that a new and powerful technique for the investigation of seizures had been discovered. William Grey Walter, a young researcher finishing his post-graduate studies at Cambridge, was selected to construct and study the EEG in clinical neurology at the Maudsley Hospital, London. His hugely productive pioneering career in the use of EEG would eventually lead to groundbreaking work in other fields --the emerging sciences of robotics, cybernetics, and early work in artificial intelligence. In this historical note his pioneering work in the fields of clinical neurophysiology is documented, both in the areas of epileptology and tumour detection. His landmark contributions to clinical neurophysiology are worthy of documentation.

"The Epilepsies": Kinnier Wilson's landmark epileptology.

Kinnier Wilson, better known for his eponymous disease, in fact devoted much of his career to the study of epilepsy. In his long campaign to alter the general perception of epilepsy, he spent much time and effort decrying the use of "epilepsy" as a single disease, pleading for individual consideration for its sufferers. In addition, he undertook an extensive reconsideration of many of the basic principles of his mentor and friend the great John Hughlings Jackson. Eventually his status as the European expert in epilepsy earned him the signal honour of authorship (in English) of the important chapter entitled "The Epilepsies" in the 1935 flagship German language textbook of neurology that appeared immediately prior to the advent of the EEG. This chapter and the one in his posthumously published textbook of 1940 are landmarks of epileptology of that era.

Characterizing psychosocial outcome trajectories following seizure surgery.

PURPOSE: We have developed a new approach to characterizing psychosocial outcome after seizure surgery that allows us to identify diverse individual trajectories as well as subgroups of patients with similar outcomes. METHODS: Eighty-nine anterior temporal lobectomy (ATL) patients were recruited through our Seizure Surgery Follow-up and Rehabilitation Program. The Austin CEP Interview was used to measure psychosocial adjustment presurgery, at discharge, and 1, 3, 6, 12, and 24 months postsurgery. Patient outcome trajectories were characterized across this time frame using a profile-focused form of dual clustering that leads to a lattice representation. RESULTS: Two major, distinct outcome subgroups were identified. Fifty-eight percent (58%) of patients reported good outcomes, characterized by improved family dynamics, enhanced vocational and social functioning, and driving by 24 months postsurgery. A range of trajectories led to these outcomes, including the experience of early postoperative adjustment difficulties. In contrast, 31% of patients perceived their outcomes as poor, reporting affective disturbance at 12 months and difficulties discarding sick role behaviors. Early anxiety served as a marker of poor outcomes, while resolution of early anxiety and vocational change at 12 months were indicators of good outcomes at 24 months. The remaining 11% of patients reported minimal adjustment features. CONCLUSIONS: For the majority of patients, seizure surgery gives rise to an evolving process of postoperative adjustment that leads to distinct outcome trajectories. Our approach questions the clinical sensitivity of health-related quality of life measures that average across patients to provide a unitary measure of outcome. Although preliminary, the findings have implications for postoperative treatment, including the identification of markers of longer-term outcomes.

Murray Alexander Falconer and the Guy's-Maudsley Hospital seizure surgery program.

The 1949 appointment of Murray Falconer to the neurosurgical post of Guy's Hospital, London, resulted in the creation of an extremely productive seizure surgery program, in the early days of this discipline. In association with the Institute of Psychiatry at the Maudsley Hospital, his program produced in-depth research on the neuropsychiatry, the neuropathology and the psychosocial follow-up of temporal lobe epilepsy treated by surgical ablation. These results constitute a very significant landmark in the history of the early days of the neurosurgical attack on refractory epilepsy.

Mood disturbance before and after seizure surgery: a comparison of temporal and extratemporal resections.

PURPOSE: Mood disturbance is a common comorbid condition of temporal lobe epilepsy before and after seizure surgery. Few studies have examined mood disturbance in patients undergoing resections outside the temporal lobe (extratemporal resections). This study aimed to compare the early, postoperative evolution of mood disturbance in temporal and extratemporal lobe epilepsy patients to examine the effect of site of surgical resection on mood outcome. METHODS: The study used a longitudinal design and was qualitative in nature. Sixty seizure surgery patients (43 temporal resections, 17 extratemporal resections) were assessed before surgery and at discharge, 1 month, and 3 months after surgery, by using the Austin CEP Interview. Psychosocial adjustment, psychiatric difficulties, including depression and anxiety, and seizure frequency were assessed. RESULTS: Before surgery, both temporal and extratemporal patients had significant psychiatric histories with similarly high rates of depression (33 and 53%, respectively) and anxiety (23 and 18%, respectively). After surgery, significantly more temporal patients were seizure free at each of the reviews compared with extratemporal patients. Temporal patients also reported significantly higher levels of depression (26%), anxiety (42%), and psychosocial adjustment difficulties (64%) at the 1-month review than did extratemporal patients. Mood disturbance was significantly associated with adjustment difficulties in both groups, but was not related to seizure outcome at any review period. CONCLUSIONS: A general increase in mood disturbance was evident after surgery, particularly in temporal resection patients at the 1-month review. Site of surgery and psychosocial adjustment showed significant associations with postoperative mood disturbance, supporting the role of both neurobiological and psychosocial factors in mood outcome.

The amygdala and sexual drive: insights from temporal lobe epilepsy surgery.

The aim of this study was to explore the relationship between the amygdala and human sex drive. We compared amygdalar volume in groups of patients with or without sexual changes after temporal lobe resection and in age-matched neurologically normal subjects. Forty-five patients with intractable temporal lobe epilepsy who underwent surgical resection in the Comprehensive Epilepsy Program at the Austin and Repatriation Medical Centre completed a semistructured interview and questionnaire relating to sexual outcome after surgery. Volumetric analyses of both amygdalae were conducted on the patients' preoperative T(1)-weighted magnetic resonance imaging scans and those of 46 neurologically normal controls. Patients who reported a postoperative sexual increase had a significantly larger amygdalar volume contralateral to the site of their resective surgery than patients with a sexual decrease or no change than control subjects. There was a significant positive relationship between contralateral amygdalar volume and the maximum degree of sexual change. We have demonstrated a relationship between contralateral amygdalar volume and sexual outcome in patients undergoing temporal lobe resection. This finding provides evidence for an important role of the amygdala in regulating human sexual behavior. A larger contralateral amygdala may contribute to the expression of increased or improved sexuality after temporal lobe resection.

Paradoxical results in the cure of chronic illness: the "burden of normality" as exemplified following seizure surgery.

Little has been written about processes of recovery following life-changing medical interventions for chronic illness. This article reviews our research with chronic epilepsy patients undergoing neurosurgery for the relief of intractable partial seizures. This research has given rise to a new conceptualization of adjustment and outcome following effective treatment of chronic illness, representing the first, detailed characterization of this process from a psychological and psychosocial perspective. Crucial to outcome are patient and family expectations prior to treatment, and learning to discard roles associated with chronic illness after treatment. These and the posttreatment affective functioning of the patient temper the view of medical outcome, and can account for paradoxical clinical effects, such as worsening patient psychosocial functioning in the context of medical treatment success. Our results have clear implications for the clinical management of chronically ill patients and their families to optimize treatment outcome.