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"Seizures have become a means of somehow learning things about myself" - A qualitative study of the development of self-efficacy and mastery during a psychotherapeutic intervention for people with epilepsy
Abstract
Background:
Psychological interventions may enhance health-related quality of life in people with epilepsy. The concepts of self-efficacy and mastery may be particularly relevant in the context of epilepsy. To date, the investigation of psychological interventions has not included a qualitative analysis of the effects of such interventions on the interrelation between mastery and general and epilepsy-specific self-efficacy. This qualitative study aimed to explore the relationship between the lived experiences of these concepts in people with epilepsy who participated in a resource-oriented and mindfulness-based psychotherapeutic intervention delivered on a one-to-one basis in an outpatient setting.
Methods:
Semi-structured pre- and postintervention interviews were conducted with people with epilepsy who participated in a six-month resource-oriented and mindfulness-based intervention. The formulation of intervention goals was based on the preintervention interviews. The intervention involved regular one-to-one interactions with the therapist, journal-keeping, and mindfulness-based relaxation. Qualitative content analysis of pre- and posttherapy interviews was conducted to characterize changes in subjective experiences.
Results:
Nine people with epilepsy aged 18-59 years participated in 9 to 22 (median 13) sessions. The following six main themes emerged: (A) Encouragement of individual solutions, (B) Awareness of the link of personal traits with seizure-related worries, (C) How to develop self-efficacy, (D) Shaping everyday life in a way that is good for oneself (general self-efficacy), (E) Coping with seizures (seizure-related self-efficacy), (F) Epilepsy as a means of increasing self-knowledge and control over one's life (sense of mastery). The patients' development of self-efficacy was motivated by their personal initial goals and facilitated by the encouragement to find individual solutions and an increased awareness of the link of personal traits with seizure-related worries. A sense of mastery only emerged through the development of general self-efficacy and as a result of the active self-examination prompted by the challenge of living with epilepsy.
Conclusion:
The qualitative differences observed before and after a psychotherapeutic intervention for individuals with epilepsy increase our understanding of the complex process of psychotherapy-associated change involving self-efficacy and mastery and highlight the contribution that qualitative research approaches can make.
... The psychotherapeutic intervention was based on the approach outlined in the workbook ''Taking Control of Your Seizures" developed by Andrews et al. as a modular seizure-specific integrative psychotherapeutic intervention [13]. Meaningful reductions in the frequency of epileptic seizures have been observed in previous retrospective [14] and prospective [15] uncontrolled trials; improvements in self-efficacy and sense of mastery have been reported by participants in a qualitative investigation [16]. A German version of this modular patient workbook was used during this intervention [17] (see Table 1 for treatment modules). ...
... The median number of scheduled sessions during the considered treatment period of six months was 11 sessions [range: [6][7][8][9][10][11][12][13][14][15][16][17][18][19][20][21][22]. Closer examination revealed that seven participants (35%) received six to eight sessions that were at least three weeks apart, which corresponds to a low treatment frequency. ...
... The median number of scheduled sessions during the considered treatment period of six months was 11 (range [6][7][8][9][10][11][12][13][14][15][16][17][18][19][20][21][22]. Only three participants missed more than one treatment session; two of these three participants had been diagnosed with borderline personality disorder and such patients have been known to display attendance issues. ...
Background:
There is great scientific and clinical interest in the effective integration of psychological treatments into comprehensive epilepsy care to optimize treatment outcomes and psychosocial functioning in people with epilepsy. Stepped care is a promising approach to accommodate personalized psychotherapeutic care in academic and regular outpatient settings. It aims at providing patients with the most adequate treatment duration, number of sessions, and treatment method while systematically monitoring their treatment processes.
Methods:
This is an uncontrolled feasibility study of process-oriented and personalized psychotherapeutic care for epilepsy in a naturalistic setting. The objective of this study was to evaluate individual changes of health-related quality of life (QOLIE-31) and psychiatric comorbidity (BDI-II, BSI) in participants by applying the concept of the reliable change index (RCI) to outcomes that were obtained at baseline and six months after the beginning of the intervention. Additionally, we assessed the relationship between outcome scores, the number of attended sessions, and history of childhood trauma by linear regression models.
Results:
Twenty patients [15 women/5 men, median age 48 years (range: 23-73 years)] were recruited. The median number of scheduled sessions was 11 (range: 6-22); there were no drop-outs. After psychotherapy quality of life (QOLIE-31), global distress (BSI) and depression (BDI-II) scores improved significantly (p-values: QOLIE-31: 0.03; BSI: 0.01; BDI-II: 0.01). The largest improvements were achieved for the emotional well-being subscale of the QOLIE-31 (47%, p-value: 0.02), the global severity index of the BSI (83%), and depression severity (BDI-II) (60%). Linear regression models did not reveal any significant association between interim changes, number of attended treatment sessions, and history of childhood trauma.
Conclusion:
The results suggest that process-oriented and personalized psychotherapeutic has low attrition and results in improved quality of life and reduced psychiatric symptoms in people with epilepsy. Our findings indicate that responsiveness to psychotherapy is not dependent on the number of attended treatment sessions. Participants with childhood trauma did not need more treatment sessions to achieve an improvement. More research is needed to understand and address mechanisms and precursors of responsiveness to psychotherapy.
... Several studies have shown that many people with seizures try to counteract them or arrest them at the aura stage [10,[28][29][30][31][32], a process that is potentially related to this type of metaphor. This struggle should be recognized and considered in a psychotherapeutic approach to seizures as it can have a significant effect on the perceived burden, but can also be a potential resource [33,34]. Some of the metaphors reveal existential meanings, which may not be apparent immediately, such as the deep-seated fear of death that can accompany seizures. ...
... Metaphors have a central role in almost all psychotherapeutic approaches [9,37], and understanding the metaphors that people with seizures use may help to tailor psychotherapeutic approaches and interventions to their specific needs. Encouraging people with seizures to report their experiences freely in a psychotherapeutic context seems to be beneficial in itself and helps people to develop self-efficacy and a feeling of regaining control [34]. Taking up and exploring metaphors that people use in their descriptions may be an essential part of this process. ...
Mental health comorbidities are frequent in epilepsy. Consequently, psychotherapy is becoming increasingly important. To address the psychological needs of people with epilepsy (PwE) it is essential to understand the subjective experiences of seizures better. There is little research on how people report seizures, and which psychological representations they have. We conducted a thematic analysis based on 42 (micro-phenomenological) interviews with 15 participants on their experiences of seizures. In these interviews, we identified three categories of seizure descriptions: (1) phenomena related to the body and emotions; (2) the moments that are difficult to describe; and (3) the use of figurative language and metaphors. Paroxysmal physical and psychological sensations were often reported spontaneously by the participants. The moments that were difficult to describe were expressed, among other things, through the use of paradoxes or the report of a ‘strange’ feeling and led participants to use figurative language. As these metaphors can reveal important information about people’s subjective experiences, they were analyzed in detail. We identified the three main types of metaphors that the participants used most frequently: (1) perception, (2) nature, and (3) battle. The theme of battle was most frequently used in different forms and was closely related to the metaphors from the fields of perception and nature, thus representing a key point in the personal experience of seizures. These findings can contribute to developing psychotherapeutic approaches for the treatment of seizure disorders.
... Andrews and colleagues have developed a modular seizurespecific integrative psychotherapeutic intervention outlined in the workbook Taking Control of Your Seizures (Reiter et al., 2015). Meaningful reductions in seizure frequency have been observed in previous retrospective (Michaelis et al., 2012) and prospective (Reiter & Andrews, 2000) uncontrolled trials in epilepsy and in a randomized controlled trial in PNES (LaFrance et al., 2014); improvements in general and seizure-related self-efficacy and sense of mastery have been reported by participants in a qualitative investigation (Michaelis et al., 2018b). German treatment modules (see Table 1) have been developed based on the approach outlined in this workbook . ...
... The participants' number of scheduled treatment sessions and quantitative assessment of the application of the SNS were summarized using descriptive statistical methods. Qualitative content analysis (Mayring, 2015;Michaelis et al., 2018b) of the participants' written responses to open questions was conducted in an interprofessional group consisting of two neurologists (RM, FE) and two psychologists (GS, YH). Written responses were paraphrased, reduced, summarized, and coded by RM. ...
High-frequency monitoring of psychological variables has been recommended to monitor and manage psychotherapeutic processes. However, high-frequency monitoring might be regarded as burdensome for participating patients. This feasibility study applied the concept of high-frequency treatment monitoring in patients with seizures and psychiatric comorbidities in an outpatient neurology service. The treatment monitoring entailed the development of a personalized process questionnaire, daily online monitoring, and regular reflection of the current time series graphs. Participants' feedback on user-friendliness and usefulness of this treatment monitoring was evaluated quantitatively and qualitatively. Participants' compliance rates (CRs) of daily self-assessments after 6 months were correlated with their quantitative feedback on user-friendliness and usefulness and the number of scheduled treatment sessions during this time period. Twenty patients, 15 women/5 men, median age 48 years (range: 23-73 years), were recruited. The median number of scheduled sessions was 11 sessions (range: 6-22). Participants reported a high overall satisfaction with the user-friendliness and usefulness of treatment monitoring. No notable correlations could be found between CRs and quantitative feedback nor between CRs and the number of scheduled treatment sessions. Personalized high-frequency monitoring of psychological variables seems to be feasible to monitor and manage process-oriented psychotherapeutic care in patients with seizures and psychiatric comorbidities. The results support the user-friendliness and usefulness of high-frequency monitoring and suggest that high-frequency monitoring may be suitable for monitoring of low-frequent treatment sessions and patients with attendance issues. (PsycInfo Database Record (c) 2022 APA, all rights reserved).
... The whole series illustrating the successful application of the seizure interruption technique is shown in Fig. 3. The last picture of this series illustrates the sense of control and empowerment that people with epilepsy may gain through the confinement of a focal aware seizure (Lohse et al. 2015;Michaelis et al. 2018a). The neurophysiologic basis of confining focal seizure activity How can we imagine that aura interruption is possible? ...
... The ultimate salutogenetic perspective: Seizures become a means of personal development Qualitative evidence suggests that people with epilepsy may develop an increased sense of self-efficacy because of the active self-examination prompted by the challenge of living with epilepsy. The examination of seizure precipitants may in fact be appreciated as an opportunity for person- " Participants may even perceive their epilepsy as being more present in their lives but not in the sense of fearing seizures or feeling limited by seizures but rather in a way that incites self-care (Michaelis et al. 2018a). This qualitative data is supported by empirical data showing how medical and psychological parameters influence quality of life in patients with epilepsy (Ring et al. 2016). ...
Epileptic activity is characterized by synchronous neuronal activity. Fig. 1 illustrates neuronal ‘behaviour’ at the onset of a focal epileptic seizure: In focal epilepsy, certain epileptogenic neurons occasionally ‘attempt to convince’ interconnected neurons to engage in seizure (i.e., synchronous) activity. If a sufficient amount of neurons ‘behaves’ synchronously, their activity may get recorded by an electroencephalogram (EEG) as epileptiform discharges.
... In the past few years, healthcare professionals have shown an increasing interest in incorporating mindfulness-based techniques into their therapeutic approaches. The interest for the use of MBIs has grown and has led to "top-down" dissemination of these programs in some countries as mentioned in guidelines on a depression relapse program in the United Kingdom ( Horst et al. (2013) involving five therapist-patient dyads and the other by Michaelis et al. (2018), including nine adults, offered initial indications that patients might perceive the methods as beneficial. This shows that research in this area is still at an early stage. ...
Depressive disorders are an enormous societal burden given their high prevalence and impact on all facets of being human (e.g., relationships, emotions, motivation). There is a variety of evidence-based psychological treatments, with cognitive behavioral therapy (CBT) being the gold standard for major depression. Research has shown that mindfulness-based interventions (MBIs) such as mindfulness-based cognitive therapy (MBCT) are an effective relapse prevention and treatment for depression and that MBIs can be integrated in individual therapy. Furthermore, various delivery modes (e.g., digital-delivered therapy) and settings are offered to best meet different needs and improve accessibility: Evidence suggests that therapist-guided digital CBT, blended therapy, and, to some degree, digitalized MBIs may be an efficacious supplement to traditional face-to-face therapy. This chapter provides an overview of the principles and evidence base for CBT and MBCT as well as different delivery modes for depressive disorders in adults. Finally, chances and challenges of integration are discussed as implications for practice, as well as recommendations and ideas for future research.
... Preictal phenomena such as exhaustion in connection with a decreased stress perception have been described in epilepsy only on an anecdotal basis and have not yet been systematically studied. 12 Whereas an increased variance was found in four individuals belonging to the first group of patients, a decreased variance was found in two patients belonging to the second (mixed/inverse) group of patients. Changes in variance may be related to the phenomenon of "critical slowing," 13 which has been described in some neuropsychiatric disorders. ...
Psychological stress is the most commonly self‐reported precursor of epileptic seizures. However, retrospective and prospective studies remain inconclusive in this regard. Here, we explored whether seizures would be preceded by significant changes in reported stressors or resource utilization. This study is based on high‐frequency time series through daily online completion of personalized questionnaires of 9–24 items in epilepsy outpatients and compared responses 1–14 days before seizures with interictal time series. Fourteen patients (79% women, age = 23–64 years) completed daily questionnaires over a period of 87–898 days (median = 277 days = 9.2 months). A total of 4560 fully completed daily questionnaires were analyzed, 685 of which included reported seizure events. Statistically significant changes in preictal compared to interictal dynamics were found in 11 of 14 patients (79%) across 41 items (22% of all 187 items). In seven of 14 patients (50%), seizures were preceded by a significant mean increase of stressors and/or a significant mean decrease of resource utilization. This exploratory analysis of long‐term prospective individual patient data on specific stressors and personal coping strategies generates the hypothesis that medium‐term changes in psychological well‐being may precede the occurrence of epileptic seizures in some patients.
... This points to the devastating effects refractory epilepsy and seizures can have on patientś lives. The finding is further in line with literature reporting that involving patients directly in the choice of treatment options may install in them a feeling of mastery that counteracts negative effects [20]. In order for such a sense of mastery to develop, adequate presurgical information is essen-tial. ...
... To help PLWE become more independent, ensure they receive appropriate care and support throughout their transition in life. The vast majority of people with epilepsy can drive, go to college, get a job, get married, and raise a family [53][54][55]. Learning about epilepsy, your rights and responsibilities, and where to find support and resources will help you live a happy and fulfilling life [56]. ...
... Initial item development was followed by assessment of content validity by experts, a pilot study in patients with epilepsy and other conditions, and a second expert panel to assess validity. 57,58 Three items were eliminated, and 2 items were revised from the original version of the EASE, resulting in the current 40-item version. Measurement Properties. ...
Purpose:
To identify concepts important to understanding the experiences of adults with focal onset seizures (FOS) and evaluate clinical outcome assessments (COAs) for measuring these concepts in clinical trials of treatments for FOS.
Methods:
A search of published qualitative research, clinical trials, and approved product labels for FOS treatments was performed to develop a conceptual disease model (CDM) of patients' experience of living with FOS. Concepts of interest (COI) were selected, and a second literature search was conducted to identify COAs measuring these concepts. Ten COAs were selected and reviewed to document their development process, evidence of measurement properties, and methods for interpreting change scores using criteria proposed in regulatory guidelines for patient-reported outcomes to support label claims.
Results:
Concepts identified from the published literature (13 articles, 1 conference abstract), 24 clinical trials, and 8 product labels were included in a novel CDM. Impacts on physical, cognitive, and social and emotional function were chosen as COI for evaluating treatment outcomes for FOS; the additional concept of social support and coping strategies was chosen to understand patients' lived experiences. From 51 unique COAs identified, 10 were selected based on their potential coverage of the COI; some symptom severity and health-related quality of life (HRQoL) COAs covered multiple COI. Of these 10, 8 COAs evaluated impacts/limitations on physical function, 8 measured social and emotional impacts, and 5 assessed social support and coping strategies. While most assessments had gaps in evidence validating their measurement properties, 2 COAs measuring symptom severity and 1 COA measuring HRQoL had evidence confirming their potential utility in clinical trials to support label claims.
Conclusion:
This research provides insights into the experience of patients with FOS and identifies COAs that measure concepts considered to support endpoints in clinical trials for FOS.
... Finding meaning in the disease, dealing with it, and accepting forthcoming changes in the life of PWE are all influenced especially by one's own efforts. Michaelis and others came to similar conclusions by suggesting that the patients' development of self-efficacy was motivated by their personal initial goals and facilitated by the encouragement to find individual solutions [35]. ...
Introduction:
Epilepsy is a complex disease. The consequences of epilepsy are varied and manifested in all aspects of people with epilepsy's (PWE) lives. The purpose of this study was to define individual experiences of epilepsy, expressed in narratives, and to find the stem of each narrative-a core event in the PWE's experience of the disease around which they structure their overall narrative.
Method:
A qualitative, phenomenological research method was used. We conducted semistructured interviews with 22 PWE and analysed the content using a combination of inductive and deductive methods, based on which we determined the stem narratives.
Results:
The stem narrative of the epilepsy narrative is an important life experience of PWE. We divided the stem narratives into four groups: lifestyle changes, relationship changes, the consequences of the inciting incident, and the limitations of the disease. In our study, we found that the stem narrative was, in all but one case, a secondary (psychosocial) factor resulting from epilepsy, but not its symptom (epileptic seizure). The stem narrative, where aspects of life with epilepsy are exposed, points to a fundamental loss felt by PWE.
Conclusion:
The narrative of the experience of epilepsy has proven to be an important source of information about the disease and life of PWE and also about the aspects at the forefront of life with epilepsy. The secondary epilepsy factors that we identified in the stem narratives were the greatest burden for PWE in all cases but one.
... The psychological intervention was based on the approach outlined in the workbook ''Taking Control of Your Seizures" developed by Andrews et al. as a modular seizure-specific integrative psychotherapeutic intervention [17]. Meaningful reductions in seizure frequency have been observed in participants in previous retrospective [18] and prospective [19] uncontrolled trials; improvements in self-efficacy and sense of mastery have been reported by participants in a qualitative investigation [20]. A German version of this patient workbook was used during the intervention [21] (see Table 1 for treatment workbooks); the intervention was delivered in one-to-one sessions with the therapist. ...
Background
This feasibility study applied the concept of daily systematic monitoring of personalized psychological variables and investigated patients’ compliance in order to evaluate if its integration in outpatient psychotherapy is feasible and if patients found the development and daily application of personalized questionnaires user-friendly and useful.
Methods
A naturalistic sample of patients with epilepsy (PWE) was enrolled to participate in an outpatient psychotherapy program. A personalized process questionnaire was developed with each patient based on an individual psychological system’s model at the outset of therapy. Daily time-stamped self-assessments were collected during outpatient psychotherapy. This process-monitoring was technically realized by an internet-based device for data collection and data analysis, the Synergetic Navigation System (SNS). The reflection of person-specific time series informed by patients’ replies to their personalized process questionnaire was integrated in the therapy process. Compliance rates were assessed during a period of six months (i.e., 180 days) after the first entry of the questionnaire [compliance rate = (number of completed questionnaires/180) × 100]. User-friendliness and usefulness of this process monitoring were evaluated quantitatively.
Results
Twenty patients [15 women/5 men, median age 48 years (range 23–73 years)] were recruited. Compliance rates were high (median: 93%, range 31–100%) among the participants. Participants reported a high overall satisfaction with the application and user-friendliness of SNS.
Conclusion
The results support the feasibility of high-frequency monitoring of personalized psychological processes during outpatient psychotherapy. Repeated daily assessments of a personalized questionnaire yield highly resolved, equidistant time series data, which gives insight into individual psychological processes during outpatient psychotherapy.
... Thus, holistic, people-orient-ed treatment is also reflected in patient perception. AM works to promote self-management [29,30] and personal development [31] and to include patients' perception in research to develop interventions fitting needs [32][33][34]. The Swiss National Science Foundation study on quality of life and anthroposophic treatment of incurable cancer [35] and the ambulatory sector [36] show better performance of anthroposophic practice compared with conventional medicine in overall patient satisfaction, including fulfillment of their expectations of therapy and, for example, significantly lower use of antibiotics. ...
... Seizure interruption should not necessarily be seen as an alternative treatment (unless patients insist that they do not wish to take medication) but as part of a comprehensive therapeutic approach. This might lead to an increased sense of control and self-efficacy in those able to apply these techniques successfully (Lohse et al., 2015;Michaelis et al., 2018). Prodromes: symptoms habitually preceding a seizure by more than a few minutes are called prodromes (Alving and Beniczky, 2013). ...
Semiology is the backbone of any correct categorization of seizures, as epileptic or not, focal or bilateral, and is fundamental to elucidating how they are anatomically generated in the brain. An anatomical hypothesis derived from seizure history is the precondition for optimally designed ancillary studies. Without understanding seizure semiology, no rational therapy is possible. This article describes the semiological approach using patient history based on full use of patients’ self‐reports as well as descriptions by witnesses. Auras represent the subjective aspects of seizures and provide important semiological clues as observable signs, sometimes including rather precise direct anatomical information. Methods of extracting, facilitating and analysing self‐reports including linguistic conversation analysis are presented in detail. It is highlighted that prodromes, seizure triggers and reflex epileptic mechanisms can provide crucial information for diagnostics and therapy. Special issues considering seizure semiology in children are discussed in a separate section. Other sections are dedicated to the two most important issues of differential diagnosis: how to distinguish (1) focal from “generalized” epilepsies, particularly when focal seizure phenomena appear in a bilateral epilepsy; and (2) epileptic from a series of non‐epileptic events.
... Qualitative research has also highlighted a number of common perceptions and experiences among patients with FND that contribute to the burden of illness and impaired quality of life (57)(58)(59)(60). Capturing the distress associated with these experiences may be important to accurately measure the benefit of appropriate treatment. ...
The development and selection of optimal outcome measures is increasingly recognized as a key component of evidence-based medicine, particularly the need for the development of a standardized set of measures for use in clinical trials. This process is particularly complex for functional neurological disorder (FND) for several reasons. FND can present with a wide range of symptoms that resemble the full spectrum of other neurological disorders. Additional physical (e.g., pain, fatigue) and psychological (e.g., depression, anxiety) symptoms are commonly associated with FND, which also can be highly disabling with implications for prognosis, and warrant concurrent assessment, despite an unclear etiological relationship with FND. Furthermore, several unique clinical aspects of FND make it likely that the usual prioritization of "objective" (or clinician-rated) over "subjective" (or patient-rated) measures might not be appropriate. Self-report measures may be more clinically meaningful in this patient population. Despite being a common and disabling disorder, there has been little research into outcome measures in FND, and to date trials have largely used measures designed for the assessment of other disorders. An international FND Core Outcome Measure group (FND-COM) has been established to develop a consensus battery of outcomes for FND: a "core outcome set." In this perspective article, the authors reviewed the process of outcome measure development and selection before considering the specific features of FND affecting the development of a core outcome set, as well as a research agenda to optimize outcome measurement in this complex neuropsychiatric disorder.
... A previous qualitative study had investigated the effects of a psychotherapeutic intervention in people with epilepsy [9]. A candidate item set was developed based on the outcome of this previous qualitative research (CS and RM). ...
Background:
Generic or even disease-specific quality of life measures are unlikely to be equally responsive to different epilepsy treatment modalities, such as pharmacotherapy, surgery, or psychotherapy. The purpose of the present study was to summarize the development of a patient-reported outcome measure (PROM) designed to be particularly sensitive to change mediated by psychotherapeutic interventions in people with seizures.
Methods:
The development of this instrument involved seven steps: (1) Development of a candidate item set based on the outcome of previous qualitative research, (2) initial quantitative-descriptive study yielding an assessment of content validity by clinical experts, (3) qualitative-descriptive posttherapy cognitive debriefing interviews with patients with epileptic and/or nonepileptic seizures (NES), (4) English translation, (5) elicitation of qualitative feedback from international experts, (6) assessment of internal consistency and correlation with similar previously validated generic and epilepsy-specific measures in a pilot study, and (7) final expert content validity rating.
Results:
(1) The candidate item set comprised 29 stem items; five of which were followed by a follow-up (FU) item that refers to the statement of the stem item. (2) Eight clinical experts assessed content validity. Informed by rating and experts' qualitative comments, 15 items remained unchanged, eleven underwent substantial revisions, three were excluded, and six added. (3) Cognitive debriefing interviews were conducted with 14 patients with epilepsy and/or NES. Based on the interviewees' feedback, 29 of 32 items remained unchanged, two were excluded, one reworded, and four added. (4) The forwards-backwards English translation prompted substantial revision of two items because the verbatim back translation of the corresponding English items was conceptually more convincing than the original German wording. (5) The international experts identified problems with item comprehensibility/clarity of four stem and three FU items that were subsequently reworded. Ten items were added to incorporate their qualitative feedback resulting in a total of 44 items. (6) Thirty-one patients with epilepsy participated in the pilot study. The overall internal consistency of the self-Efficacy, Assertiveness, Social support, self-awareness, and hElpful thinking in people with seizures (EASE) was very good (α = 0.92). Analysis at item-level revealed problems with inverted and self-evident items. Based on this analysis, three items were eliminated and two items were revised (one FU item was turned into a stem item) resulting in a total of 42 items. (7) The second content validity rating showed final item-content validity indices (I-CVIs) between 0.38 and 1 and an excellent mean CVI of 0.92 at scale level (S-CVI/ave). Fourteen stem items were substantially revised by incorporating the experts' qualitative feedback, three items with low I-CVIs were excluded, and one item was added. The final questionnaire consisted of 40 stem items; eight of which include at least one FU item.
Conclusion:
Based on these results, the EASE is valid in terms of content, internally consistent, clear, and acceptable to patients with seizures. The measure has now been developed to the stage at which the validity and reliability as well as the psychometric properties and factorial structure of the new instrument can be assessed in larger patient groups in a prospective clinical study.
... Given the complexity of epilepsy, a better understanding of the psychological mechanisms of action of MBIs in this context is necessary to increase the efficacy of such interventions and to adapt them more specifically to the needs of people with epilepsy. Qualitative studies of epilepsy are scarce, yet offer valuable insight into the complex needs of people with this condition (Michaelis et al. 2018a). We conducted interviews with seven adults with epilepsy who followed an MBI of six weekly sessions and analysed them qualitatively. ...
Objectives
Three previous clinical trials have shown that mindfulness-based interventions reduce depressive symptoms and improve quality of life in epilepsy. We conducted a qualitative study to gain more insight into the relevant aspects of mindfulness-based interventions for people with this condition.
Methods
We conducted a mindfulness-based intervention of six weekly sessions in seven adults with epilepsy (six pharmaco-resistant). Semi-structured interviews were conducted by phone immediately after the end of the intervention and repeated after 3 months. Preliminary thematic analysis allowed the identification and grouping of themes into main categories. Bottom-up descriptive categories were constructed consistent with the phenomenological paradigm.
Results
Three main areas were explored in the interviews, which lasted on average 30 min: (1) epilepsy-related issues affecting quality of life, (2) seizures and their unpredictability and (3) coping mechanisms. Overall, participants reported that they benefited from the intervention. Participants report that the group supported them in the exchange of experiences, which helped them to re-frame their condition. At the same time, mindfulness exercises encouraged participants to look within in a kind and non-evaluative way. This combination resulted in a new way of accepting and re-integrating the condition. Two new strategies emerged to cope with seizures: accepting and controlling, but without noticeable effect on seizure frequency.
Conclusions
This study contributes to a better understanding of the psychological mechanisms at work in mindfulness-based interventions in the context of epilepsy.
Zusammenfassung
Der vorliegende Artikel befasst sich mit Möglichkeiten der ambulanten psychotherapeutischen Arbeit bei Anfallserkrankungen. Er gibt Anregungen zur Bedeutung des Zeitrahmens in einer Behandlung, zur Vielfalt der Vorgehensmöglichkeiten, die sich aus einer ersten Exploration ergeben können, zur therapeutischen Relevanz der Fremdanamnese und zu den therapeutischen Möglichkeiten verschiedener psychotherapeutischer Ausrichtungen unter Berücksichtigung neuro- und sozialkognitiver Aspekte.
Objective:
Meditation, mindfulness, and acceptance (MMA) methods have gained popularity among psychotherapists and the public. The impact of these strategies as implemented in treatment packages (e.g., mindfulness-based interventions) has been studied extensively. However, the impact of integrating MMA strategies into individual psychotherapy has not been established.
Methods:
To address this gap in the literature, we conducted a systematic review of empirical (quantitative or qualitative) studies investigating the use of MMA methods during individual psychotherapy in adult samples.
Results:
After reviewing 4671 references, only three studies (one quantitative, two qualitative) met our inclusion criteria. The one experimental study (n = 162) provided no evidence that including mindfulness meditation improved outcomes beyond other active interventions (ds = 0.00-0.12 for effects on general clinical symptoms vs. progressive muscle relaxation and treatment-as-usual, respectively). Two qualitative studies (n = 5 therapist-patient dyads in one study, n = 9 adults in one study) provided preliminary evidence that patients may find MMA methods helpful.
Conclusions:
We highlight future directions for work in this area, including clarifying optimal dosage and timing, identifying patient characteristics associated with beneficial or adverse effects, investigating cultural adaptations, and clarifying how MMA constructs can be measured within individual psychotherapy. We conclude by highlighting training recommendations and therapeutic practices.
Introduction:
Mental health comorbidities such as depression and anxiety are common in epilepsy, especially among people with pharmacoresistant epilepsy who are candidates for epilepsy surgery. The Psychology Task Force of the International League Against Epilepsy advised that psychological interventions should be integrated into comprehensive epilepsy care.
Methods:
To better understand the psychological impact of epilepsy and epileptic seizures in epilepsy surgery candidates, we analysed interviews with this subgroup of patients using Karl Jaspers' concept of limit situations, which are characterised by a confrontation with the limits and challenges of life. These are especially chance, randomness, and unpredictability, death and finitude of life, struggle and self-assertion, guilt, failure, and falling short of one's aspirations.
Results:
In 43 interviews conducted with 15 people with drug-resistant epilepsy who were candidates for epilepsy surgery, we found that these themes are recurrent and have a large psychosocial impact, which can result in depression and anxiety. For some people, epileptic seizures appear to meet the criteria for traumatic events.
Conclusion:
Understanding epilepsy and seizures as existential challenges complements the neurobiological explanations for psychological comorbidities and can help tailor psychological interventions to the specific needs of people with epilepsy, especially those who are candidates for surgical treatment.
Although previous studies have shown a correlation between mastery, self-efficacy, and perceived social support among Chinese patients with advanced kidney disease, few studies have examined their relationship pathways. This study aimed to examine decisional control preference and the relationship between mastery, perceived social support, and self-efficacy among patients with advanced chronic kidney disease. A cross-sectional survey was conducted, and 350 participants were investigated using Control Preference Scale, Personal Mastery Scale, Perceived Social Support Scale, and Self-efficacy Scale. The mediating relationships were determined via structural equation modeling. Results showed that education and economic status were demographic factors influencing patients' decisional control preference. The model showed that mastery and self-efficacy had a direct effect on decisional control preference while perceived social support had an indirect effect mediated via mastery and self-efficacy. Therefore, improving self-efficacy can increase patient willingness to involve in medical decision-making. This study provides new interventions and future directions for promoting decisional control preference.
Zusammenfassung
Die Erstbeschreibung selbstinduzierter epileptischer Anfälle stammt von 1827. Die Prävalenz wird von der Mehrzahl der Autoren bei 1% unselektierter Patienten mit Epilepsie angege-ben. Dabei machen die Patienten meist etwa ein Viertel der Patienten mit photosensibler Epilepsie aus. Es sind daneben jedoch auch viele nicht-visuelle Auslösemechanismen beschrieben. Die Ursachen können in angenehmen Empfindungen während der ausgelösten Anfälle oder einer spannungslösenden Funktion der Anfälle bestehen. Häufig wird das Selbstinduktionsmanöver als unwillkürlicher Vorgang erlebt. Die Behandlung erweist sich insgesamt als schwierig. Für einzelne Patienten sind positive Effekte einer Verhaltenstherapie beschrieben. Bei photosensiblen Epilepsien wird die Abschottung von den auslösenden Reizen durch Sonnenbrillen empfohlen. Unter pharmakologischen Therapien scheinen Fenfluramin, Clonazepam und Valproat am aussichtsreichsten. Der Erfolg hängt unabhängig von der Methode stark von der Veränderungsbereitschaft der Patienten ab.
Menschen mit Epilepsie haben im Vergleich zu Menschen mit anderen chronischen Erkrankungen eine niedrigere gesundheitsbezogene Lebensqualität. Abgesehen von vollständiger Anfallsfreiheit tragen psychologische und psychosoziale Variablen stärker als medizinische Variablen zu dieser niedrigen Lebensqualität bei. Von allen Behandlungsansätzen für Menschen mit Epilepsie haben insbesondere psychoedukative und psychotherapeutische Interventionen eine Verbesserung der gesundheitsbezogenen Lebensqualität und eine Reduktion von psychiatrischen Symptomen zum Ziel.
The success of a lobectomy procedure for adult-onset epileptic seizure (AOES) would depend on the quality of the patient’s relationship with the health care provider. This ethnographic multiple case study explored patient and health professional relationship contexts following surgery for seizure activity reduction treatment. We interviewed five Australian men (aged 34–59) with a history of AOES and neurosurgery regarding the quality of their relationship with health care providers. Interpretive phenomenological analysis (IPA) of the data yielded three interrelated relationship themes of Timeliness (promptness of necessary care), Support (availability, understanding, and empathy), and Responsibility (adaptive communication, self-care, and decision-making ownership). Self-directed relationship resourcing enhanced subjective well-being in the patients.
Background
The quality of life of people who suffer from seizures is not only determined by medical variables but is also essentially influenced by their confidence in self-efficacy.Objective
Development of work material in the German language Self-action in seizures to complement medical treatment by systematic psychotherapeutic support in general and confidence for seizure-related self-efficacy.Material and methodsThe work material was developed on the basis of an American work manual. Well-tried concepts from self-help support groups and results from psychotherapy research were integrated. Through practice research we investigated therapeutic strategies that turned out to be helpful for people with seizures and identified evidence-based mediators. Step-by-step we explain the psychotherapeutic and behavioral medical theoretical background of these mediators and illustrate them using case examples. Since 2014 the relevance and comprehensibility of this work material has been tested by patients and experts in feedback loops.Results and previous experiencesThe results of this development are 12 workbooks with different key topics. These books are suitable for self-study as well as for integration into a seizure-related individual or group psychotherapy and will be published in 2020.Preliminary conclusions and outlookQualitative research indicates that these work materials can support comprehensive care by a systematic inclusion of individual patient resources. Further training and quantitative evaluation of the efficacy of the treatment concept are in planning.
Background:
Epilepsy is a serious, common and chronic neurological condition characterized by an increased disposition to suffer occasional seizures. Psychological interventions may enhance the well-being of individuals with epilepsy. So far, no qualitative study has investigated the complex effects of psychotherapeutic interventions in epilepsy.
Methods:
This study examined the questions as to if and how the participation in a patient-centered 6-month resource-oriented mindfulness-based intervention would enhance an individual's well-being and sense of self-efficacy. Pre- and post-intervention semi-structured interviews were conducted with a total of 9 participants. Qualitative data analysis (Mayring) in an inter-professional group was combined with the evaluation of the Quality of Life in Epilepsy Inventory-31. The case reports follow the CAse REport Guidelines for Anthroposophic Art Therapies (CARE-AAT). To show the diverse nature of individual intervention objectives, we chose the single case study format, contrasting 2 participants with diagnosed focal epilepsy.
Results:
Pre-intervention deductive and inductive outcome categories revealed high levels of stress regarding personal seizure experience and loss of autonomy, for both participants. Post-intervention interviews consist of increased seizure-related self-efficacy and self-awareness: while minimizing the debilitating impact of the seizures on her life was relevant to Iris, Carl developed a personalized aura interruption technique.
Conclusions:
These qualitative case analyses suggest that enhanced psychological well-being and even positive medical results may be achieved when epilepsy care focuses on the wishes that are most meaningful to the individual. The possibility of improving the quantitative evaluation of the effects of psychotherapeutic interventions needs to be explored.
Background and purpose:
Having epilepsy requires individuals to learn about self-management. So far, trials of self-management courses have not included in-depth qualitative evaluations of how the learning method influences participants' perceptions and behaviour. We aimed to interview participants who had attended a course, as part of a randomized controlled trial, to examine: (i) their perceptions of what they valued and negative aspects of the intervention, and (ii) whether and in what ways they continued to make use of the training.
Methods:
Twenty participants were selected within 6 months of undertaking a course from the larger randomized controlled trial conducted in England. Semi-structured interviews were based on a topic guide.
Results:
Participants' characteristics were representative of the clinical and demographic characteristics of the trial group. Their mean age was 44 years, half were male, and three-quarters had had epilepsy for over 10 years and had experienced one or more seizures in the previous month. Participants valued the opportunity to meet 'people like them'. Structured learning methods encouraged them to share and compare feelings and experience. Specific benefits included: overcoming the sense of 'being alone' and improving self-acceptance through meeting people with similar experience. Over half reported that this, and comparison of attitudes and experience, helped them to improve their confidence to talk openly, and make changes in health behaviours.
Conclusions:
People feel socially isolated in long-term poorly controlled epilepsy. They gain confidence and self-acceptance from interactive groups. Expert-facilitated courses that encourage experiential learning can help people learn from each other, and this may enhance self-efficacy and behaviour change.
Objective: The feasibility of a high-frequency real-time monitoring approach to psychotherapy is outlined and tested for patients' compliance to evaluate its integration to everyday practice. Criteria concern the ecological momentary assessment, the assessment of therapy-related cognitions and emotions, equidistant time sampling, real-time nonlinear time series analysis, continuous participative process control by client and therapist, and the application of idiographic (person-specific) surveys.
Methods: The process-outcome monitoring is technically realized by an internet-based device for data collection and data analysis, the Synergetic Navigation System. Its feasibility is documented by a compliance study on 151 clients treated in an inpatient and a day-treatment clinic.
Results: We found high compliance rates (mean: 78.3%, median: 89.4%) amongst the respondents, independent of the severity of symptoms or the degree of impairment. Compared to other diagnoses, the compliance rate was lower in the group diagnosed with personality disorders.
Conclusion: The results support the feasibility of high-frequency monitoring in routine psychotherapy settings. Daily collection of psychological surveys allows for the assessment of highly resolved, equidistant time series data which gives insight into the nonlinear qualities of therapeutic change processes (e.g., pattern transitions, critical instabilities).
To investigate the effectiveness of mindfulness-based therapy (MT) and social support (SS) in patients with drug-resistant epilepsy.
We performed an assessor-blinded randomized control trial. Sixty patients with drug-resistant epilepsy were randomly allocated to MT or SS (30 per group). Each group received 4 biweekly intervention sessions. The primary outcome was the change in the total score of the Patient-Weighted Quality of Life in Epilepsy Inventory (QOLIE-31-P). Secondary outcomes included seizure frequency, mood symptoms, and neurocognitive functions. The assessors were blinded to the patient's intervention grouping. Results were analyzed using general linear model with repeated measure.
Following intervention, both the MT (n = 30) and SS (n = 30) groups had an improved total QOLIE-31-P, with an improvement of +6.23 for MT (95% confidence interval [CI] +4.22 to +10.40) and +3.30 for SS (95% CI +1.03 to +5.58). Significantly more patients in the MT group had a clinically important improvement in QOLIE-31-P (+11.8 or above) compared to those who received SS (11 patients vs 4 patients). Significantly greater reduction in depressive and anxiety symptoms, seizure frequency, and improvement in delayed memory was observed in the MT group compared with the SS group.
We found benefits of short-term psychotherapy on patients with drug-resistant epilepsy. Mindfulness therapy was associated with greater benefits than SS alone in quality of life, mood, seizure frequency, and verbal memory.
This study provides Class II evidence that mindfulness-based therapy significantly improves quality of life in patients with drug-resistant epilepsy.
© 2015 American Academy of Neurology.
Epilepsy is a multifaceted chronic neurological disorder with diverse effects on a patient's psychosocial well-being. The impact on quality of life has been well documented, and many studies have addressed the detrimental influences epilepsy has on an individual. However, the emotional impact and the influence of the condition on family members have not been well studied. Furthermore, the majority of the studies on this topic have been confined to childhood epilepsy, and there is only scarce literature that discusses the effects on family members caring for adult patients. The purpose of this literature review was to examine the influence of adult epilepsy on the psychological and social well-being of individual family members. We explored the psychological and physical well-being, satisfaction with social circumstances, and perceived level of support in families of adult patients with intractable epilepsy. The paper also suggests best practices on how to improve the family's quality of life, as well as future directions for research. Superior medical care and a positive family support system are important conditions that can help adult individuals with epilepsy best deal with their condition.
Copyright © 2015. Published by Elsevier Inc.
Reaching a saturation point in thematic analysis is important to validity in quali- tative studies, yet the process of achieving saturation is often left ambiguous. The lack of information about the process creates uncertainty in the timing of recruitment closure. This exploratory study was conducted to demonstrate a rigorous approach to reaching saturation through two-stage establishment of a codebook used for thematic analysis. The codebook development involved inductive analysis with six interviews, followed by a refinement of the coding system by applying them to an additional 33 interviews. These findings are dis- cussed in relation to plausible pattern in code occurrence rate and suggested sample sizes for thematic analysis.
Growing evidence suggests a bidirectional interaction between epileptic seizures and psychological states, fuelling the interest in the development and application of psychobehavioral therapy for people with epilepsy (PWE). The objective of this article is to review the various psychobehavioral therapies in regard to their application, hypothesized mechanisms, and effectiveness. Most psychobehavioral therapy aims at improving psychological well-being and seizure control. Behavioral approaches, cognitive-behavioral therapy (CBT), and mind-body interventions are the most widely applied approaches for PWE. Cognitive-behavioral therapy, mind-body approaches, and multimodel educative interventions have consistently demonstrated positive effects on enhancing well-being. Nevertheless, the effects on seizure control remain inconsistent, partly attributable to small clinical trials and inadequate control groups. Assessor-blinded randomized controlled trials with sufficient power and carefully defined therapeutic components corresponding with objective and subjective outcome measures are recommended for future trial designs.
Anthroposophic medicine is an integrative multimodal treatment system based on a holistic understanding of man and nature and of disease and treatment. It builds on a concept of four levels of formative forces and on the model of a three-fold human constitution. Anthroposophic medicine is integrated with conventional medicine in large hospitals and medical practices. It applies medicines derived from plants, minerals, and animals; art therapy, eurythmy therapy, and rhythmical massage; counseling; psychotherapy; and specific nursing techniques such as external embrocation. Anthroposophic healthcare is provided by medical doctors, therapists, and nurses. A Health-Technology Assessment Report and its recent update identified 265 clinical studies on the efficacy and effectiveness of anthroposophic medicine. The outcomes were described as predominantly positive. These studies as well as a variety of specific safety studies found no major risk but good tolerability. Economic analyses found a favorable cost structure. Patients report high satisfaction with anthroposophic healthcare.
This study investigates neuronal activation patterns during the psychotherapeutic process, assuming that change dynamics undergo critical instabilities and discontinuous transitions. An internet-based system was used to collect daily self-assessments during inpatient therapies. A dynamic complexity measure was applied to the resulting time series. Critical phases of the change process were indicated by the maxima of the varying complexity. Repeated functional magnetic resonance imaging (fMRI) measurements were conducted over the course of the therapy. The study was realized with 9 patients suffering from obsessive-compulsive disorder (subtype: washing/contamination fear) and 9 matched healthy controls. For symptom-provocative stimulation individualized pictures from patients' personal environments were used. The neuronal responses to these disease-specific pictures were compared to the responses during standardized disgust-provoking and neutral pictures. Considerably larger neuronal changes in therapy-relevant brain areas (cingulate cortex/supplementary motor cortex, bilateral dorsolateral prefrontal cortex, bilateral insula, bilateral parietal cortex, cuneus) were observed during critical phases (order transitions), as compared to non-critical phases, and also compared to healthy controls. The data indicate that non-stationary changes play a crucial role in the psychotherapeutic process supporting self-organization and complexity models of therapeutic change.
This study examines the differences in beliefs about God's influence in everyday life across levels of socioeconomic status
(SES) and whether that association is contingent upon religious involvement (i.e., frequency of praying, attendance, reading
religious texts, and subjective religiosity). I focus specifically on the beliefs in divine involvement and divine control.
Using data from two national 2005 surveys of Americans, I observe the following: (1) overall, SES is associated negatively
with beliefs in divine involvement and control; (2) with the exception of reading religious texts, each indicator of religious
involvement is associated with higher levels of beliefs in divine involvement or divine control; (3) SES interacts with each
dimension of religious involvement such that the negative association between SES and divine involvement or control is attenuated
at higher levels of religious involvement. I discuss the contributions of this research for theoretical perspectives on the
relationship between SES and beliefs about God's influence in everyday life, underscoring the need to assess religious involvement
in these processes.
Objectives. To examine the impact of active student participation on quality of care in an integrative inpatient setting. Methods. Over a two-year period, we surveyed all patients treated on the Clinical Education Ward for Integrative Medicine (CEWIM), where final-year medical students are integrated into an internal medicine ward complementing conventional medicine with anthroposophic medicine. Patients treated on the regular wards of the same internal medicine department served as the control group (CG). General quality of care was studied with the Picker Inpatient Questionnaire, physician empathy with the Consultation and Relational Empathy measure, and patient enablement with the Patient Enablement Index. ANCOVA was used to control for covariates while examining significant differences between both patient groups. Results. Comparison of the CG wards and the CEWIM revealed no significant differences in medical treatment success. The CEWIM, however, achieved better results for physician-patient interaction, physician empathy, and patient enablement. Eighty Percent of the CEWIM patients rated student participation as positively impacting quality of care. Conclusion. Our results indicate that incorporating students in an integrative healthcare setting may result in greater patient centeredness. Further studies are needed to determine whether this is due to organizational advantages, students' empathic activity, the impact of teaching, or learner-teacher interaction.
Objective: Evaluate medical students’ communication and professionalism skills from the perspective of the ambulatory patient and later compare these skills in their first year of residency. Methods: Students in third year neurology clerkship clinics see patients alone followed by a revisit with an attending neurologist. The patient is then asked to complete a voluntary, anonymous, Likert scale questionnaire rating the student on friendliness, listening to the patient, respecting the patient, using understandable language, and grooming. For students who had completed 1 year of residency these professionalism ratings were compared with those from their residency director. Results: Seven hundred forty-two questionnaires for 165 clerkship students from 2007 to 2009 were analyzed. Eighty-three percent of forms were returned with an average of 5 per student. In 64% of questionnaires, patients rated students very good in all five categories; in 35% patients selected either very good or good ratings; and <1% rated any student fair. No students were rated poor or very poor. Sixty-two percent of patients wrote complimentary comments about the students. From the Class of 2008, 52% of students received “better than their peers” professionalism ratings from their PGY1 residency directors and only one student was rated “below their peers.” Conclusion: This questionnaire allowed patient perceptions of their students’ communication/professionalism skills to be evaluated in a systematic manner. Residency director ratings of professionalism of the same students at the end of their first year of residency confirms continued professional behavior.
Delusions in persons with schizophrenia who have limited insight have been targeted with different treatment modalities with equivocal results. Working with the Guided Self-Determination method used in shared decision-making and problem solving, a 55-year-old male diagnosed with schizophrenia gained insight into his own delusions during a period of six weeks with individual training. The case study is based on qualitative data, reflection sheets, and interview and field notes from the Guided Self-Determination training. The patient's new insight developed in a process from resistance to receptiveness and then from doubt to reaching a new system in his thoughts.
Autistic traits and perplexity are considered core features of schizophrenia in phenomenological psychiatry. They express a fundamental disturbance of the self-world relation (including disturbances of self and intersubjectivity). The aim of our study was to examine this disturbance by exploring in detail how autism and perplexity are experienced subjectively.
It is a qualitative single-case study. In order to fully examine our patient's experiences within the context of his experiential world and not only as isolated or decontextualized symptoms, we applied a heideggerian framework, i.e. Heidegger's exhaustive account of the self-world relation (care).
Through the framework of care, we discovered a profound disturbance of the self-world relation in our patient, characterized by subtle experiences of estrangement, anxiety and exposure. We found these experiences to be enduring, pervasive and generative for the development of other symptoms.
We argue that these experiences can be seen as experiential correlates of schizotypy and of vulnerability to schizophrenia, and furthermore that an understanding of these experiences can play a role in diagnostic and differential diagnostic procedures, e.g. in early detection or in the search for high-risk individuals, as well as in the psychotherapy of schizophrenia.
Taking Control of Your Seizures: Workbook offers a comprehensive approach to improving seizure control and enhancing quality of life. It is intended to be used by people with epileptic and nonepileptic seizures (NES), preferably with a therapist or health professional who acts as a seizure counselor. It is also intended for physicians, therapists, and other health professionals who treat patients with seizures. The Workbook provides guidance for the participant to seek support and take an active role with the treating clinician in optimizing drug therapy. It offers tools, such as how to identify the physical, interpersonal, and emotional factors that trigger seizures, and how to take action before negative emotions lead to seizures. For example, one chapter provides information on pre-seizure aura and how to use this warning to stay safe and potentially stop seizures. Another chapter teaches the experience of changing one’s brain state through relaxation exercises. The Workbook provides insight into inner issues and conflicts that affect seizure control and well-being. It details ways to reduce tension and manage life stresses. The Workbook elucidates seizures’ “other symptoms,” ranging from déjà vu and scattered thinking to odd sensations. As past participants progressed through the Workbook, many noticed a decrease in seizure frequency and improvement in associated symptoms. Their seizures became the motivating force for setting goals to enhance personal wellness. As demonstrated in clinical trials, participants who completed the Workbook had tools going forward to reduce seizures, handle setbacks, and lead a fulfilling life.
Objective:
Patients with epilepsy (PWE) are more likely to have unmet healthcare needs than the general population. This systematic review assessed the reasons for unmet needs in PWE.
Methods:
Medline, Embase, PsycINFO, Cochrane, and Web of Science databases were searched using keywords relating to unmet healthcare needs, treatment barriers, and access to care. The search included all countries, adult and pediatric populations, survey and qualitative studies, but excluded non-English articles and articles published before 2001. Reasons for unmet needs were extracted.
Results:
Nineteen survey and 22 qualitative studies were included. Three survey and five qualitative studies excluded patients with comorbidities. There were twice as many studies on unmet mental healthcare needs than unmet physical care needs in PWE. Poor availability of health services, accessibility issues, and lack of health information contributed to unmet needs in both Western and developing countries. Lack of health services, long wait lists, uncoordinated care, and difficulty getting needed health information were prevalent in the United States (US) as well as countries with a universal healthcare system. However, unmet needs due to costs of care were reported more commonly in studies from the US.
Significance:
This systematic review identified reasons for unmet needs in PWE across different countries, which will inform specific interventions required to address these unmet needs. Unmet needs may have been underestimated due to exclusion of PWE with comorbidities in some studies. Additional studies are needed to understand the contribution of comorbidities on unmet needs and their interaction with caregiver and family factors.
Method:
Eighty-three participants (33:50m/f; age range 12-17years) were randomized to either the treatment or control group in seven tertiary paediatric neuroscience centres in the UK, using a wait-list control design. Participants were excluded if they reported suicidal ideation and/or scored above the cut off on mental health screening measures, or if they had a learning disability or other neurological disorder. The intervention consisted of six weekly 2-hour sessions using guided discussion, group exercises and role-plays facilitated by an epilepsy nurse and a clinical psychologist.
Results:
At three month follow up the treatment group (n=40) was compared with a wait-list control group (n=43) on a range of standardized measures. There was a significant increase in epilepsy knowledge in the treatment group (p=0.02). Participants receiving the intervention were also significantly more confident in speaking to others about their epilepsy (p=0.04). Quality of life measures did not show significant change. Participants reported the greatest value of attending the group was: Learning about their epilepsy (46%); Learning to cope with difficult feelings (29%); and Meeting others with epilepsy (22%). Caregiver and facilitator feedback was positive, and 92% of participants would recommend the group to others.
Conclusion:
This brief psychosocial group intervention was effective in increasing participants' knowledge of epilepsy and improved confidence in discussing their epilepsy with others. We discuss the qualitative feedback, feasibility, strengths and limitations of the PIE trial.
Objective:
Emerging integrative metacognitive therapies for schizophrenia seek to promote subjective aspects of recovery. Beyond symptom remission, they are concerned with shared meaning-making and intersubjective processes. It is unclear, however, how such therapies should understand and respond to psychotic content that threatens meaning-making in therapeutic contexts. Accordingly, we sought to understand what factors precede and potentially trigger psychotic content within psychotherapy and what aids in resolution and return to meaning-making.
Method:
Forty-eight transcripts from a single psychotherapy case were analyzed with thematic analysis. Passages of delusional or disorganized content were identified and themes present prior to the emergence and resolution of such material were identified and coded.
Results:
Themes that preceded the emergence of psychotic content varied across early, middle, and late phases of therapy. Material related to the patient's experience of inadequacy and potential vulnerability, therapist setting boundaries within the therapeutic relationship and making challenges appeared to trigger psychotic content, especially early in treatment.
Conclusions:
Psychotic content may emerge in session following identifiable antecedents which change over phases of therapy. Attending to psychotic content by assuming a non-hierarchical stance and not dismissing psychotic content may aid in maintaining intersubjectivity and support patient's movements toward recovery in integrative metacognitive therapies.
The current study examined whether negative illness perceptions help explain the link between depression and quality of life. Seventy patients with epilepsy completed standardized self-report questionnaires measuring depression, illness perception, and quality of life (QOL). Illness perception statistically mediated the relationship between depression and QOL (Indirect effect (CI; confidence interval) = −.72, lower limit = −1.7, upper limit = −.22, p < .05). Results held with and without adjusting for potential confounding variables (age, sex, ethnicity, income, and seizure frequency) and when operationalizing depression as a continuous variable that indexed severity of symptoms or as a dichotomous variable that indexed criteria consistent with a diagnosis of major depressive disorder. This study is the first to suggest that illness perceptions may be a useful target in screening and intervention approaches in order to improve QOL among low-income, racially/ethnically diverse patients with epilepsy.
Objective:
Self-management challenges facing adults with epilepsy include limited understanding of the condition and treatment, associated psychosocial issues, and lack of community integration. Self-management interventions improve patients' medical, life role, and emotional management. Previous interventions, developed from expert opinion, indicated issues with participant engagement/retention, and limited follow-up periods. PACES in Epilepsy addressed methodologic concerns by utilizing patient needs assessment data (n = 165) to derive self-management content and program features for evaluation via randomized controlled trial (RCT).
Methods:
Participants were adults with chronic epilepsy (n = 83), without serious mental illness or substantive intellectual impairment, who were recruited from two epilepsy centers. Participants were assigned randomly to intervention or treatment-as-usual groups. Outcomes included the Epilepsy Self-Management Scale (ESMS), Epilepsy Self-Efficacy Scale (ESES), Quality of Life in Epilepsy-31 (QOLIE-31), Patient Health Questionnaire-9 (PHQ-9), and the Generalized Anxiety Disorder-7 (GAD-7), administered at baseline, postintervention (8 weeks), and 6 months postintervention. The intervention was an 8-week group of 6-8 adults co-led by a psychologist and trained peer with epilepsy that met one evening per week at a hospital for 75 min. Topics included medical, psychosocial, cognitive, and self-management aspects of epilepsy, in addition to community integration and optimizing epilepsy-related communication. The treatment group provided satisfaction ratings regarding program features.
Results:
PACES participants (n = 38) improved relative to controls (n = 40) on the ESMS (p < 0.001) and subscales [Information (p < 0.001); Lifestyle (p < 0.002)]; ESES (p < 0.001); and QOLIE-31 (p = 0.002). At 6-month follow up, PACES participants remained improved on the ESMS (p = 0.004) and Information subscale (p = 0.009); and Energy/Fatigue (p = 0.032) and Medication Effects (p = 0.005) of the QOLIE-31. Attrition in both groups was low (8% in each group) and all program satisfaction ratings exceeded 4.0/5.0, with leadership (4.76), topics (4.53), and location (4.30) as the most highly rated aspects.
Significance:
A consumer generated epilepsy self-management program appears to be a promising intervention from multiple perspectives, particularly in relation to disability management.
The aim of this study was to investigate the potential role of an acute adverse stress as "trigger" for the onset of epilepsy.
Among 4618 consecutive patients, twenty-two reported a major life event within three months before the onset of epilepsy.
All patients had focal epilepsy except one with idiopathic generalized epilepsy. The temporal lobe was involved in 90% of patients with focal epilepsy. More precisely, 13 patients (62% of patients with focal epilepsy) had medial temporal lobe epilepsy (MTLE), two had lateral temporal lobe epilepsy, four had temporoparietooccipital junction epilepsy, and two patients had central lobe epilepsy. The mean age and the median age at onset of epilepsy for patients with MTLE were both 38years (range: 9.5-65years). Ten patients had right and three had left MTLE. Among patients with focal epilepsy, MRI was abnormal in 7 (33%) with hippocampal sclerosis in four, periventricular nodular heterotopia in two, and complex cortical dysgenesis in one. The mean age at onset of epilepsy for patients with brain lesions was 26years (range: 9.5-49). Twelve patients (54%) reported a death as a triggering factor for the onset of their epilepsy. Seven patients (32%) reported that a relationship of trust had been broken. Three patients (14%) had been subjects of violence. No patient reported sexual abuse as a triggering factor.
This study provides evidence that some patients (5/1000 patients) began their seizures in the wake of significant life events. The average age at onset of epilepsy is quite late, around age 30, even in the presence of brain lesions. These patients are emotionally and affectively more prone to have consequences of a stressful life event. The recognition and management of such situations may bring significant relief with improvement of the control of epilepsy.
Copyright © 2015 Elsevier Inc. All rights reserved.
The health locus of control is the subjective perception of control over one's health. It has been studied for years as one of several factors that determine patient health-related behaviors. The aim of this study was to investigate how the epileptic aura is associated with the health locus of control, anxiety, and depression.
Patients were included retrospectively, based on patient records from the epilepsy monitoring unit of the Rigshospitalet University Hospital. Participants were asked about the presence and nature of auras in a semistructured interview. The Multidimensional Health Locus of Control Scale, Form C was used to evaluate the health locus of control. Three domains were evaluated: internal, where health is controlled by personal action; chance, where health is controlled by fate or luck; and powerful others, where health is controlled by the actions of others (e.g., doctors and parents). The Hospital Anxiety and Depression Scale was used to evaluate levels of anxiety and depression.
Forty-nine patients, with mean age of 38years, participated in the study. Of these, 67% reported experiencing one or more auras; i.e., subjective warning signs prior to a generalized or focal seizure with an impairment in consciousness. Patients that could react to their aura prior to a seizure scored higher on the internal subscale of the Multidimensional Health Locus of Control questionnaire compared to participants that could not react to their aura.
The ability to react to an aura prior to a seizure correlated positively with the internal subscale of the health locus of control. However, it did not significantly correlate with the external subscales of chance and powerful others in the health locus of control. Moreover, there was no significant relation between the ability to react to an aura prior to a seizure and the levels of anxiety or depression.
Copyright © 2015 Elsevier Inc. All rights reserved.
Purpose: Underdiagnosed depression and anxiety are well-recognized issues in chronic epilepsy, but the evolution of these symptoms after diagnosis is not well understood. We aimed to identify mood trajectories after a first seizure, and to examine factors impacting these trajectories.
Methods: Seventy-four patients were evaluated at 1, 3, and 12 months with (1) the Hospital Anxiety and Depression Scale, and (2) a semistructured interview assessing patients’ initial psychological reaction to the seizure at 1 month (limited vs. pervasive loss of control). The SAS Institute’s TRAJ data modelling procedure was employed to delineate trajectories.
Key Findings: Two depression and three anxiety trajectories were identified, with significant overlap. The majority of patients (∼74%) followed a trajectory with low depression throughout the study, and either low or moderate anxiety. A minority followed trajectories with high depression and anxiety from diagnosis (∼16%). Patients with high levels of distress were adversely affected by seizure recurrence and antiepileptic drugs (AEDs), whereas those with low levels were not. Trajectories were predicted by the patient’s sense of loss of control early after diagnosis and were weakly related to demographic and medical variables (age, gender, education, relationship status, psychiatric history, and prior epileptic events).
Significance: Methods that account for heterogeneity in patient responses are critical for developing a clinically relevant understanding of adjustment after a newly diagnosed seizure. Most patients appear to be resilient in the face of early seizures, whereas those at risk of longer-term psychological difficulties may be evident from diagnosis. Early screening for depression and anxiety is warranted.
To compare the quality of life (QOL) in adolescents with epilepsy or asthma.
Eighty-five epileptic adolescents, 81 adolescents with asthma and 71 normal controls were recruited from the Affiliated Children's Hospital of FuDan University from June, 2007 to December, 2007. These adolescents received the Medical Outcomes Study 36-Item Short-Form Health Survey (MOS F-36) in order to evaluate QOL.
Although the onset age for adolescents with asthma was younger (P=0.032), there were no significant differences in clinical characteristics between adolescents with epilepsy and asthma. The results of MOS SF-36 demonstrated the following: (1) For the adolescents with epilepsy, the total QOL score and sub-scores for 8 items were significantly different between epilepsy patients and healthy controls, and the total QOL score and sub-scores for 4 items were significantly different between controlled and uncontrolled epilepsy groups; (2) for the adolescents with asthma, the total QOL score and sub-scores for 4 items were significantly different between asthma patients and healthy controls, and the total QOL score and sub-scores for 4 items were significantly different between controlled and uncontrolled asthma groups; (3) the QOL of adolescents with epilepsy was poorer than that of the adolescents with asthma regardless of the remission stage and disease stage; (4) the emotional and mental health of adolescents with epilepsy was inferior to that of adolescents with asthma.
The QOL of adolescents with chronic paroxysmal diseases including epilepsy and asthma deserves close attention and should be included as a key parameter when evaluating disease status.
The aim of this retrospective study is to describe changes of seizure frequency in epilepsy patients who participated in the Andrews/Reiter behavioral intervention for epilepsy. For this uncontrolled retrospective study, data were extracted from patients' medical journals. Intention-to-treat-analyses were restricted to patients with sufficient documentation supporting a diagnosis of probable or definite epilepsy. Main outcome variable was a comparison of mean seizure frequency at baseline and toward completion of the program. The seizure frequency of 30 (50%) patients showed a clinically meaningful improvement (>50% reduction of seizures) toward the end of the intervention. Twenty-two (37%) patients became seizure-free at the end of the intervention. In summary, a clinically meaningful reduction in reported seizure frequency was observed in epilepsy patients who received the Andrews/Reiter intervention for epilepsy. Prospective trials are needed to further investigate the program's efficacy and to study epileptic seizure triggers.
People with epilepsy (PWE) have a high chance of experiencing depression and anxiety disorders over their lifetime. However, those most at risk are unknown. Psychosocial variables have been suggested as potentially important risk factors. A systematic review was conducted in order to critically assess available evidence regarding the psychosocial predictors of depression and anxiety in adults with epilepsy.
Electronic databases searched were MEDLINE, PsycINFO and Web of Science. Studies were included if they assessed depressive or anxiety symptoms using a validated questionnaire, and controlled for the role of potentially important epilepsy factors. Eleven studies were identified and assessed for research standards using the Quality Index Scale (QIS).
Ten of the eleven studies found at least one significant predictor of depression and all six studies that assessed anxiety found one or more significant predictors.
Overall QIS score was only 7.5 out of 15, indicating significant design limitations of many included studies. There was also large variability between studies in measures used to assess psychosocial variables.
Studies did not support the importance of attributional theory and stigma in the development of depression in epilepsy. There was inconsistent support for the role of illness representations but likely support for the role of stress and self-efficacy. Consistent support was found for the role of coping strategies and perceived social support. Given that psychosocial factors are potentially modifiable, a better understanding of their role in the development of depression in people with epilepsy is urgently needed to guide effective treatments.
Patients with epilepsy frequently experience depression and emotional stress and these may function as seizure triggers in epileptogenic frontotemporal cortex, which serves in emotional processing. Eight patients enrolled in a pilot trial of a 6-month epilepsy-specific behavioral approach comprising counseling and relaxation to recognize and eliminate emotional seizure triggers. Potential participants with psychogenic seizures were excluded by long-term EEG and/or the MMPI profile. One participant became seizure free, another had an approximately 90% reduction in seizures, and two additional participants achieved a greater than 50% reduction in seizure frequency (total responder rate=50%), stable during 6 months of observation after the intervention. All completers showed marked and stable improvement of quality of life (Quality of Life in Epilepsy-89 inventory) and temporary improvement in the Profile of Mood States. An adequately powered randomized controlled trial is needed to confirm our findings, which suggest that behavioral approaches may hold promise for motivated patients with epilepsy.
We introduce two complementary measures for the identification of critical instabilities and fluctuations in natural time series: the degree of fluctuations F and the distribution parameter D. Both are valid measures even of short and coarse-grained data sets, as demonstrated by artificial data from the logistic map (Feigenbaum-Scenario). A comparison is made with the application of the positive Lyapunov exponent to time series and another recently developed complexity measure-the Permutation Entropy. The results justify the application of the measures within computer-based real-time monitoring systems of human change processes. Results from process-outcome research in psychotherapy and functional neuroimaging of psychotherapy processes are provided as examples for the practical and scientific applications of the proposed measures.
Arguments and data are presented establishing the rationale of using the K factor as a suppressor on certain MMPI clinical scales. Five scales, Pt, Sc, Hs, Pd, and Ma, are improved by the correction as indicated by increased correspondence between scores and clinical status. The scales Hy, D, Mf and Pa are not so treated nor is it established that the K-score should be taken into account subjectively in evaluating them. It is suggested that the K-correction should be made routinely by users of the MMPI and that old records should be scored and redrawn if any research or validation study is to be carried on.
Knowledge is lacking about the nature of stressors experienced by persons with epilepsy and the strategies used to cope with these stressors. This study explored epilepsy-specific stressors, coping strategies used, level of trait anxiety, and perception of health in 107 adults who had had epilepsy for 1 year or longer. 'Need to take medications regularly' and 'Uncertainty about when a seizure will occur' were the stressors subjects ranked highest. 'Try to maintain some control over the situation', 'Hope things will get better', and 'Think through different ways to solve the problem' were the top coping strategies used. Persons who perceived their health as better used more problem-oriented strategies than did those who rated their health as poor. The mean level of trait anxiety was 42.1, which is higher than that for a normal population. Continued studies are needed to more clearly identify stressors experienced at various times in the trajectory of epilepsy and the precise coping strategies used for specific stressors.
This study examined the influence of two psychosocial variables mediating between disease severity and quality of life (QoL) in epilepsy; social support and mastery (measured by locus of control and self-efficacy). A model placing these two variables as mediators between disease severity and QoL was tested with structural equation modeling.
Eighty-nine patients with epilepsy (58% men, age 36+/-12 years) were given the following instruments: Liverpool Seizure Severity Scale, Interpersonal Support Evaluation List, Epileptic Self-Efficacy Scale, Locus of Control scale, and the World Health Organization's Quality of Life Questionnaire, the WHOQOL.
Structural equation modeling showed good fit between the research model and the data (Bentler-Bonett Normalized Index of fit, 0.96; LISREL GFI, 0.95). Ninety percent of the variance of the WHOQOL was explained by a combination of disease severity, self-efficacy in epilepsy, social support, and locus of control. Mastery was found to mediate the correlation between disease severity and QoL, and social support was found to act as a mediator between disease severity and mastery.
The study findings emphasize the possibility of improving QoL among patients with epilepsy by counseling and treatment aimed at reinforcing their self-efficacy and locus of control, as well as by improving their SoS.
More than 30 percent of patients with epilepsy have inadequate control of seizures with drug therapy, but why this happens and whether it can be predicted are unknown. We studied the response to antiepileptic drugs in patients with newly diagnosed epilepsy to identify factors associated with subsequent poor control of seizures.
We prospectively studied 525 patients (age, 9 to 93 years) who were given a diagnosis, treated, and followed up at a single center between 1984 and 1997. Epilepsy was classified as idiopathic (with a presumed genetic basis), symptomatic (resulting from a structural abnormality), or cryptogenic (resulting from an unknown underlying cause). Patients were considered to be seizure-free if they had not had any seizures for at least one year.
Among the 525 patients, 333 (63 percent) remained seizure-free during antiepileptic-drug treatment or after treatment was stopped. The prevalence of persistent seizures was higher in patients with symptomatic or cryptogenic epilepsy than in those with idiopathic epilepsy (40 percent vs. 26 percent, P=0.004) and in patients who had had more than 20 seizures before starting treatment than in those who had had fewer (51 percent vs. 29 percent, P<0.001). The seizure-free rate was similar in patients who were treated with a single established drug (67 percent) and patients who were treated with a single new drug (69 percent). Among 470 previously untreated patients, 222 (47 percent) became seizure-free during treatment with their first antiepileptic drug and 67 (14 percent) became seizure-free during treatment with a second or third drug. In 12 patients (3 percent) epilepsy was controlled by treatment with two drugs. Among patients who had no response to the first drug, the percentage who subsequently became seizure-free was smaller (11 percent) when treatment failure was due to lack of efficacy than when it was due to intolerable side effects (41 percent) or an idiosyncratic reaction (55 percent).
Patients who have many seizures before therapy or who have an inadequate response to initial treatment with antiepileptic drugs are likely to have refractory epilepsy.
This is a retrospective study of the efficacy of a short-term comprehensive multidisciplinary neurobehavioral treatment approach for complex partial epilepsy. Eleven patients were treated intensively for five consecutive days followed by 6 months of weekly telephone contact and an additional 6 months of monitoring of seizure logs and journals. Data was analysed at least 24 months after initiation of treatment. Pre-treatment seizure frequency ranged from 1 to 15 per month. Post-treatment seizure frequency was zero per month for the nine patients who experienced less than four seizures per month prior to treatment and less than two per month for the other two patients. Additional benefits of the treatment program were improved levels of professional achievement in the arts and computer sciences and reduction of medication dosages.
The main hypothesis of this study was that negative and positive affectivity, self-efficacy and health-related locus of control are important for psychosocial adjustment in patients with epilepsy. These dimensions are rarely examined directly in relation to the psychosocial adjustment in these patients. Correlations between measures of these constructs and measures of psychosocial adjustment in epilepsy were investigated. One hundred and one patients answered the Washington psychosocial seizure inventory (WPSI), the positive and negative affect schedule (PANAS-X), the multidimensional health locus of control scales (MHLC), the generalized self-efficacy scale and a scale measuring self-efficacy in epilepsy. Reliability analyses, correlational analyses and multiple stepwise regression analyses were performed. Negative affectivity (NA), positive affectivity (PA) and generalized self-efficacy showed high correlations with the WPSI scales emotional adjustment, overall psychosocial adjustment and quality of life. The epilepsy self-efficacy measures showed high, but lower correlations with the same WPSI scales. The MHLC scales showed low correlations with the WPSI scales. Multiple regression analyses showed that PA, NA and measures of self-efficacy explained more than 50% of the variances on emotional adjustment, overall psychosocial functioning and quality of life. In conclusion, positive and negative affectivity and self-efficacy are important predictors of perceived emotional adjustment, psychosocial adjustment and quality of life in patients with epilepsy. NA is the best predictor, but PA and self-efficacy measures give unique predictions independent of NA.
Epilepsy is both a medical diagnosis and a social label. The traditional care of patients with epilepsy tends to focus on seizure control and drug treatment. There is a growing concern in the West about the importance of the influence of psychosocial factors on the quality of life. The main purpose of the present study is to explore and delineate the relationships between biomedical and psychosocial predictors and the health-related quality-of-life outcomes of Chinese patients in Hong Kong. Independent measures consisted of two types of predictors: biomedical and psychosocial variables. The biomedical variables included seizure frequency and the number of years since diagnosis. The psychosocial variables included locus of control, social support, and mood. The Quality of Life in Epilepsy Scale was used as the outcome measure. Correlation and hierarchical regression techniques were used. Results showed that psychosocial variables did make a significantly independent contribution to the prediction of the quality of life of patients with epilepsy. Furthermore, results suggested that mood could act as a mediator between seizure characteristics and psychosocial factors, on the one hand, and quality of life, on the other. The statistical significance of the health locus of control and the satisfaction with social support confirmed the importance of the influence of the subjective sense of mastery of condition on quality of life. The clinical implication was discussed in the context of developing psychological interventions in increasing the self-efficacy and resourcefulness of the patients.
A subjective sense of uncertainty is a common theme in the experience of patients with epilepsy. Lack of control has also been implicated as an etiologic factor in the development of psychosocial problems in epilepsy. Cognitive-behavioral interventions emphasizing the mediating role of thoughts and self-control appear to be particularly relevant for patients with epilepsy because anxiety and depression are the most common problems. Despite its apparent importance, very little systematic research has been published on the effectiveness of psychological treatment of epilepsy. The purpose of the present study was to conduct a seminal outcome evaluation of psychological intervention for adult patients in Hong Kong. Using a waitlist control group, the treatment program focused particularly on cognitive restructuring and seizure control. Results indicated significant gains by the treatment group in overall quality of life and self-efficacy. In particular, marked improvements were noted for emotional well-being, seizure, and stress management. The clinical implications are discussed in the context of developing specific intervention programs and outcome measures specific to the various needs of adult patients with epilepsy.
Epilepsy is the most common serious neurological disorder worldwide, affecting about 50 million people. In most people with epilepsy, the disorder is clinically benign. However, because of the stigma associated with having epilepsy, which is common to many cultures, there can be a negative effect on the social identity of people with the disorder, particularly for those living in resource-poor countries. In this paper, we present general theories of stigma, as well as those specific to chronic illness. We relate these theories to the stigma associated with epilepsy throughout history and across cultures. We review research on the relation between stigma and the overall quality of life of people with epilepsy. Finally, we address reduction of the stigma.
The purpose of the work described in this article was to evaluate the health-related quality of life (HRQOL) of adolescents with well-controlled epilepsy.
The Quality of Life in Epilepsy Inventory for Adolescents 48 (QOLIE-AD-48) was completed by 71 subjects with uncomplicated epilepsy who had been seizure-free for more than a year. HRQOL was measured in eight domains: Health Perception, Epilepsy Impact, Memory/Concentration, Physical Functioning, Stigma, Social Support, School Behavior, and Attitudes toward Epilepsy. In addition, antiepileptic drug (AED) therapy and concern over seizures recurring were analyzed in relation to HRQOL.
The mean HRQOL total scores were 83.9 for boys and 83.06 for girls. The highest scores were observed in the Physical Functioning and School Behavior domains; the lowest in the Attitudes toward Epilepsy domain. Girls reported more positive perceptions in the Stigma and Social Support domains. Greater intake of AEDs and concern over seizures recurring accounted for poorer HRQOL.
Adolescents with favorable seizure control evaluated their HRQOL as satisfactory. However, they perceived their best adjustment to epilepsy to be in the Physical Functioning and School Behavior domains. AED intake and concern over seizures recurring were predictors of HRQOL in this group.
The purpose of this paper is to show through the concrete example of epileptic seizure anticipation how neuro-dynamic analysis (using new mathematical tools to detect the dynamic structure of the neuro-electric activity of the brain) and "pheno-dynamic" analysis (using new interview techniques to detect the pre-reflective dynamic micro-structure of the corresponding subjective experience) may guide and determine each other. We will show that this dynamic approach to epileptic seizure makes it possible to consolidate the foundations of a cognitive non pharmacological therapy of epilepsy. We will also show through this example how the neuro-phenomenological co-determination could shed new light on the difficult problem of the "gap" which separates subjective experience from neurophysiological activity.
The estimated prevalence of mental health disorders in those with epilepsy in the general population varies owing to differences in study methods and heterogeneity of epilepsy syndromes. We assessed the population-based prevalence of various psychiatric conditions associated with epilepsy using a large Canadian national population health survey.
The Canadian Community Health Survey (CCHS 1.2) was used to explore numerous aspects of mental health in persons with epilepsy in the community compared with those without epilepsy. The CCHS includes administration of the World Mental Health Composite International Diagnostic Interview to a sample of 36,984 subjects. Age-specific prevalence of mental health conditions in epilepsy was assessed using logistic regression.
The prevalence of epilepsy was 0.6%. Individuals with epilepsy were more likely than individuals without epilepsy to report lifetime anxiety disorders or suicidal thoughts with odds ratio of 2.4 (95% CI = 1.5-3.8) and 2.2 (1.4-3.3), respectively. In the crude analysis, the odds of lifetime major depression or panic disorder/agoraphobia were not greater in those with epilepsy than those without epilepsy, but the association with lifetime major depression became significant after adjustment for covariates.
In the community, epilepsy is associated with an increased prevalence of mental health disorders compared with the general population. Epilepsy is also associated with a higher prevalence of suicidal ideation. Understanding the psychiatric correlates of epilepsy is important to adequately manage this patient population.
The potential psychosocial sequelae of epilepsy are well-documented, but it cannot be assumed that trajectories for quality of life (QOL) of people with epilepsy will inevitably follow its clinical course. In this article, we draw on available literature to suggest likely QOL trajectories associated with epilepsy and the broad range of disease-, patient-, and other-focused factors that appear important in determining them. We conclude that both the likely shape and time frame for QOL trajectories associated with particular clinical scenarios can be delineated, but that their shape can be altered by a much wider range of factors than those represented as epilepsy disease progression. We identify contributory factors currently relatively unexplored and highlight implications for treatment and areas for future research.
Psychological treatments for people with epilepsy
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