Abstract
Predicting the Psychosocial Outcome of Epilepsy Surgery: A Longitudinal Perspective on the ‘Burden of Normality.’
Kemp S, Garlovsky J, Reynders H, Caswell H, Baken G, Shah E. Epilepsy Behav 2016;60:149–152.
Good seizure outcomes and good psychosocial outcomes following epilepsy surgery do not necessarily follow one from the other. This study explored the relationship between several presurgical psychosocial characteristics and postsurgical quality-of-life outcomes. The study aimed to develop the concept of ‘the burden of normality’ and identify risk factors for a poor psychosocial outcome that could be targeted with ameliorative presurgery cognitive behavioral techniques. Data were collected from 77 epilepsy surgery patients from three UK epilepsy centers and presurgery and postsurgery follow-up data were obtained from 30–34 patients, depending on the measure. Measures were self-report. Postsurgery intervals were determined by the epilepsy surgery care pathway at individual centers. Presurgery poor levels of mental health, poor social functioning, increased belief in illness chronicity, and associating epilepsy with social role limitations were all associated with poor postsurgical quality of life. Adopting an accepting coping strategy presurgery was associated with good postoperative quality of life. Regression analysis showed that a good postsurgical quality of life was positively predicted by a presurgical coping style of being able to make the best of a situation and see challenges in a positive light (i.e., positive reinterpretation and growth from the COPE scale) and negatively predicted by presurgical levels of anxiety. These data are presented as an important step in identifying psychological red flags for an adverse psychosocial outcome to epilepsy surgery, as exemplified by the concept of the ‘burden of normality’ and specifying targets for preoperative ameliorative psychological advice.
Commentary
Over the past few decades, there have been unrelenting clinical and research efforts aimed at the eradication of intractable seizures. Through steady advances in pharmacologic sciences, neurosurgical intervention, and device interventions, exciting improvements in epilepsy care and outcomes are occurring.
In that vein, numerous studies have documented an upward trend of people being “cured” (i.e., becoming seizure-free) following surgical intervention even in situations of life-long seizures and multiple anti-epileptic drug (AED) attempts (1). More recently, newer approaches (i.e., responsive neurostimulation) are beginning to make their mark in the intervention arena of epilepsy treatment, with the potential for significant seizure reduction/freedom, as well as potentially lower cognitive morbidity (2). In particular, surgery has historically been offered in the context of a medical team presenting, in certain clinical cases, an offer of a potential “cure,” and then a patient subsequently receives that intervention “cure.” The next step is that the patient who attains that seizure-freedom begins a journey that includes living with the “cure.”
Within this setting of growing surgery and device-assisted populations of people (formerly having chronic epilepsy but now having achieved seizure-freedom), there is a large group of studies assessing how this new-found seizure-freedom has affected their quality of life (QOL) across aspects of social, emotional, vocational, and recreational functioning. In general, QOL improvements are found across most studies (3, 4). However, this has not always been the outcome when examined on a case-by-case basis. It has been shown that some people experience little to no QOL change, or even decline.
Within this paradoxic context of medical “cure” but psychosocial/psychiatric “non-cure,” researchers have introduced and explored the concept of “burden of normality” for postoperative epilepsy populations. Originally introduced in 1992 by Bladin (5) and later expanded upon, (6, 7) it was shown that a sizable number of people rendered seizure-free were displaying continued preoperative adjustment problems or even developing de novo postoperative adjustment difficulties (i.e., sick role behaviors, family dysfunction, occupational disability). This group's work via in-depth, structured, patient and family interviews describes heterogeneous individual trajectories of adjustment change following epilepsy surgery, which evolved to both positive and negative outcomes across various psychosocial dimensions (8). These findings reveal that often people with longstanding epilepsy who achieved seizure-freedom after surgery were then faced with unlearning a variety of maladaptive illness and sick behavior roles within a context of complex family and social dynamics.
As summarized in one of the earlier descriptions of this concept, within the example of the epilepsy postsurgery setting (6), we as professionals are guided by an optimistic assumption that people receiving a “cure” for their chronic intractable disabling condition would be able to achieve their expressed presurgery goals once they were seizure-free. While this in fact does occur in many people; unfortunately, in some instances, people in this desired position present a “paradoxic” reaction in which psychologic and psychosocial adjustment problems arise or continue as compared with presurgery settings (7).
In a recent study, Kemp and colleagues describe their interest in further exploring the issue of the “burden of normality” by examining how several presurgical psychosocial characteristics related to postsurgical QOL outcomes in a sample of people with temporal lobe epilepsy (TLE). They sought to extend prior work in the field (6–8), by identifying potential risk factors for poor psychosocial adjustment after successful epilepsy surgery (i.e., seizure-free outcome). The authors administered several standardized self-report measures assessing aspects of QOL: (Epilepsy Surgery Inventory-55; ESI), Illness Representations of Epilepsy, anxiety/depression (Hospital Anxiety and Depression Scale; HADS), and coping skills (COPE Inventory). The authors noted the large number of variables that could have been selected across these instruments but chose certain variables they thought would be sensitive predictor variables based upon prior research and clinical judgement. The ESI-55 total score was used as the primary outcome measure. The primary predictor variable used from the COPE Inventory was the positive reinterpretation and growth scale, and from the HADS, the anxiety score; although other variables were examined. The COPE scale used for the study focused questions on a patient's positive outlook to life experiences.
From an original preoperative sample of 77 participants, Kemp et al. were able to obtain postoperative data (between 6 and 12 months) for between 30 and 34 patients, depending on the measure or variable collected. As is typical for this type of epilepsy population, seizure-free rates were overall good (83% seizure-free) along with group level improvement in anxiety, depression, and QOL. Across the group, patients were also less likely to be concerned about seizure recurrence. Following up the univariate analysis, the authors conducted multiple regression analysis and found that cognitive coping strategies (e.g., positive reinterpretation, making best of the situation) as well as presurgery anxiety level significantly predicted QOL score. It was noted that positive coping was associated with improved QOL, and higher levels of preoperative anxiety were associated with lower QOL ratings postoperatively.
This study provides the interesting findings that presurgery personality and belief variables significantly influenced post-surgery adjustment. They readily acknowledge that the small postoperative patient sample is a limitation to generalization of their findings but note clinical characteristic similarities with their nonassessed postoperative group.
It was noted that the assessments were in the form of self-report, which is open to its own set of self-monitoring limitations. Future research will continue to benefit from incorporating multiple methods of assessment such as structured interviews of patients and families, as well as assessments of the family-unit relationships (8). Future development will be needed that incorporates broader measures, as well as assessment over the course of the postoperative time (8). The Willson et al. study (8) demonstrated that adjustment to the postsurgery life can change with initial early postoperative adjustment difficulties followed by positive psychosocial/QOL outcomes if difficulties are addressed within the early postoperative course. It was also noted that there exists a richness of postoperative adjustment trajectories that are affected by both preoperative and postoperative factors including psychiatric status, psychosocial situation, and presence of postoperative seizures (8).
It was pointed out by Kemp et al. that a very good seizure outcome was found in their sample, which is typical of well-characterized persons with localization-related TLE. However, Kemp et al. and others (7) have also mentioned that some patients still experience what would be classified as the “burden of normality” predicament despite achieving seizure-freedom. It seems likely that even with the development/refinement of seizure surgery technology that the burden experiences will continue. As Kemp et al. and others (7) point out, if we can improve our ability to identify “at-risk” profiles, we will then be able to offer counseling/education resources to patients and their families that may enhance the postoperative adjustment experience. At the same time, if we find burden of normality risk do we reanalyze the patient's surgery suitability in light of the chance for seizure continuation and other potential risks such as long-term cognitive/health/psychiatric or even sudden unexpected death in epilepsy (SUDEP)? In some cases, people at risk may not wish to pursue psychologic interventions presurgery, and if so, do we institute recommendations where surgery would be delayed or even denied? This continues to be an important topic for ongoing discussion.
The Kemp et al. study demonstrated that certain types of personality features can predict both positive and negative QOL outcome. These findings continue to call us to be ever vigilant and proactive in our efforts at developing structured counseling/education resources for people with epilepsy and their families. This study also shows the importance of comprehensive preoperative assessment, preoperative opportunity for low-cost psychologic counseling, and postoperative follow-up for adjustment toward resumption of preseizure roles/behaviors or more ambitiously the formation of new roles and attitudes for a release from the burden of normality.