A number of studies have examined patient expectations of epilepsy surgery. See Appendix for a summary of these studies. In 1996, my colleague Pam Thompson and I conducted a study in which we asked 70 prospective surgical candidates to rate themselves on 20 descriptive scales covering personality, cognitive, and emotional dimensions [5]. The participants were also asked to rate how they believed they would be if the surgery were successful and their seizures ceased. As a group, the candidates were expecting significant positive changes in many dimensions postoperatively. The patients were expecting to be happier, more in control, and more hopeful, independent, and interested in life. They also expected to be more skillful, be of more value, have a better memory, and be more intelligent than their preoperative selves. While not significant at a group level, some individuals reported that they would become more physically attractive following successful surgery. Many of these expectations do not compare with the psychosocial changes that have been associated with temporal lobectomy in the literature or those reported by 32 patients who had been followed up for 1 year postoperatively.

We hypothesized that surgical candidates who had lived at least part of their adult life without seizures would have a more realistic idea of life without seizures than someone who had been medically intractable since childhood, or infancy. The sample was divided into three groups: those with onset of habitual seizures in very early life (before 7 years), those with an onset in childhood (age 8–16 years), and those with an onset in adulthood, (age >17 years). However, these groups did not differ significantly in their preoperative self-ratings on any of the scales. Neither did the pattern of expectations after successful surgery differ between the three groups.

Wheelock et al. [6] examined the presurgical expectations of 32 patients and 17 of their relatives/significant others using a 7-point rating scale. The patients and their relatives together expected “moderate” to “very much better” changes in quality of life following the surgery. Group analyses suggested that the patients expected the surgery to improve their QOL to a greater degree than did their significant others. The presurgical expectation ratings did not differ by sex, age, educational level, and side of resection.

In the same year, Wilson et al. [7] reported a range of expectations about postoperative outcome in 60 presurgical candidates interviewed using a standardized, semi-structured format. These were classified into 11 categories. At follow-up 6 months after the surgery, it was the patients who tended to endorse “practical” expectations (i.e., driving, employment, activities) preoperatively, rather than expectations of a psychological or social nature (i.e., self-change, relationships) who perceived the operation to be a success. In contrast, a perceived lack of success was reported by those who had greater expectations of psychosocial changes preoperatively.

Taylor et al. [8] used open-ended questions as part of a psychiatric interview to assess the aims and ambitions for change of 69 presurgical candidates. They identified 59 categories of response in total but the desires to drive, work, increase independence, socialize, and gain freedom from medication constituted 50 % of all the aims listed. Although an informed witness (parent/spouse/ friend) was also interviewed, their results are not presented separately in the study. Interestingly, very few of participants in this study identified a desire for improvement in cognitive functioning as an aim for epilepsy surgery, in contrast to the findings of later studies.

More recently, researchers working on the seven-center cohort study in the USA examined 389 prospective candidates’ endorsements of 12 potential impacts of epilepsy surgery, and have published their results in a series of studies [9, 10]. Participants were given a list of items based on the literature and the researchers’ clinical experience (see Appendix) and told “This list includes items other epilepsy patients have felt were important to them and which they hoped to have changed as a result of surgery. Please rate each item on a scale from 1-10, 1 being not important to you, 10 being extremely important to you.” The lifting of driving limitations and an improvement in memory problems were listed by both men and women as their top two expectations of epilepsy surgery [9]. Improvements in emotional well-being and in concentration were also listed in the top five aspects of life that the patients expected to change following surgery.

The literature looking at patient expectations of epilepsy surgery is small. Patient expectations have been studied using guided interviews with open-ended questions, semi-structured interviews, and rating scales. The use of rating scales may introduce a confounding variable in expectation studies, highlighting areas that the patients have not thought of, and missing others. It is noteworthy that expectations of cognitive improvement did not feature in the Taylor et al. [8] study that used open-ended questions, but were prominent in the Baxendale and Thompson [5] and seven-center cohort studies [9, 10] that used specific rating scales. The most commonly reported expectations of improved employment opportunities and the ability to drive are realistic hopes for many surgical candidates, but they should be counseled regarding the actuarial outcome data in the literature on these likelihoods (See Chaps.​ 10 and 12). Although cognitive changes are common following surgery, improvements in function, particularly in the memory domain occur in less than a third of adult surgery candidates [11]. A desire to be free of medication and its side effects is also a common feature in expectation studies. Again this is unrealistic, particularly in the long term where studies suggest that less than 50 % of epilepsy surgery candidates will be seizure-free and off medication a decade or more after surgery [12, 13]. The small literature to date has exclusively focused on the expectations of epilepsy surgery candidates who live in resource-rich countries. It is likely that there are very significant cultural differences attached to patient’s expectations of surgery in different parts of the world. These have yet to be explored.

Although there is a large literature on decision making in medicine, relatively little attention has been paid to how epilepsy surgery patients approach their decision to consent to surgery. Rather, the literature has focused on how the medical team managing the patient makes the decision to offer surgery to a candidate. These studies range from evaluations of the specific contributions each presurgical investigation may add [14, 15] to online tools to identify candidates who may benefit from the procedure [16]. Akama-Garren et al. [17], proposed a Markov decision model to evaluate the likely outcomes and associated health utilities associated with a left anterior temporal lobectomy versus continuing with medical management. Three scenarios were considered, which varied in terms of presurgical disability and the potential for a significant postoperative decline in verbal memory abilities. Although interesting from a theoretical standpoint, these approaches have very limited clinical utility. The acceptability of a verbal memory deficit and the burden of epilepsy are unique for each patient at specific points in time and can only be judged by the patients themselves. It is noteworthy that very few studies in this field employ prospective surgical candidates as participants; where they do, there tends to be a rather paternalistic approach [18]. For example, Anderson et al. [19] examined the factors that influence patients who decide not to proceed with epilepsy surgery. Despite the fact that patients who declined surgery were less bothered by their epilepsy (even with comparable severity), more anxious about surgery, and less likely to listen to their doctors (and others), the authors concluded that patient attitudes, beliefs, and anxiety serve as barriers to “ideal care.” They concluded that their results provided opportunities for education, treatment, and intervention for the patient group. An alternative explanation might be that the results provide opportunities for education of the medical team. The participants in this study weighed the risk–benefit ratio of epilepsy surgery in a different way to the researchers and had the advantage of living with the burden of the condition.

Choi et al. [20] used focus groups to elicit the information 20 patients had used to make their decisions about temporal lobe surgery. They used both experiential (i.e., learning about other patient’s experiences through testimonials) and factual (i.e., individualized statistical information) sources of information. This kind of information can be used in the development of a patient decision aid designed to assist TLE patients in their decision making about epilepsy surgery. However, despite the obvious clinical need, no such tool has been evaluated under rigorous trial controlled conditions to date.

Elective surgery in a pediatric setting has special ethical and legal considerations, over and above those associated with surgery in adults. While a number of authors have discussed these issues at a theoretical level [21, 22], empirical studies of the expectations of children and teenagers and their parents have yet to be published. Given the prominent issues of mental capacity and informed consent in the pediatric population, a research priority would be to formally examine the discrepancies between parental and child expectations, particularly in older children and adolescents.