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Sunday, December 3, 2006 Poster Session II 7:30 a.m.–4:30 p.m.

2006; Wiley; Volume: 47; Issue: s4 Linguagem: Inglês

10.1111/j.1528-1167.2006.00001_6.x

1528-1167

Pharmacological Effects and Toxicity Studies

EpilepsiaVolume 47, Issue s4 p. 119-204 Free Access Sunday, December 3, 2006Poster Session II7:30 a.m.–4:30 p.m. First published: 30 October 2006 https://doi.org/10.1111/j.1528-1167.2006.00001_6.xAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinkedInRedditWechat Abstract 1 Jewell Carter, and 1 R. Edward Hogan ( 1 Neurology, Saint Louis University, St. Louis, MO ) Rationale: Of the more than 2 million persons in the United States with epilepsy, 400,000–600,000 are refractory to antiepileptic medication. Of these, 100,000–300,000 persons may have an epileptic region that can be surgically removed. It has already been established that the length of time a patient is referred to a tertiary epilepsy center is about 20 years. Once referred, the question becomes, what additional factors motivate a person to proceed with epilepsy surgery. Epilepsy surgery remains an underused treatment modality. To investigate factors associated with subjects who do or do not undergo epilepsy surgery, we compared two groups of subjects with refractory TLE, comparing subjects with and without a history of epilepsy surgery. Methods: We retrospectively reviewed all subjects who were evaluated at The Greater Midwest Epilepsy Treatment Center at Saint Louis University during the period of 1990–2001. The epilepsy surgery group was selected by consecutive review of subjects with a diagnosis of mesial temporal lobe epilepsy due to mesial temporal sclerosis who underwent epilepsy surgery. Subjects were matched, on a case by case basis, with subjects with chronic intractable temporal lobe epilepsy with no history of epilepsy surgery. The groups were matched for age, gender and total lifetime seizures. Using Fisher's Exact test, we compared marital status, insurance, race, and employment between the groups. For the epilepsy surgery subjects, all clinical data was taken from the pre-surgical evaluation. Results: There were 15 men and 15 women in each group. Mean ages were 34.8 for surgery and 37.7 for non-surgery groups (p = 0.34). Total lifetime seizures between groups were comparable (p = 0.25). Employment between the groups was significantly different (the surgery group being more likely to be employed), p = 0.0127. Defining insurance as Medicaid with or without Medicare, there was a near-significant finding (the non-surgery group being more likely to have Medicaid), p = 0.0692. Race (defined as white/non-white) (p = 0.47), and marital status (p = 0.79) were non-significant. Conclusions: Employment is associated with subjects who underwent epilepsy surgery. While there are many factors that may lead patients to undergo epilepsy surgery, our findings are suggestive that the wish to sustain employment is an important factor, regardless of severity of epilepsy. Of note, a U.S. Department of Health and Human Services research findings, identified that a major concern of persons with disabilities receiving SSDI and/or SSI was this: “SSDI and/or SSI benefits were not sufficient to live on, but fear of loss of benefits discouraged work attempts for some, and for others the benefits disappeared too soon after first work attempts were made.” This may indicate possible hesitancy on the part of some with epilepsy to proceed with surgery. 1 Laura L. Jurasek, 1 Daphne Quigley, 1 D. Barry Sinclair, 1 Syed Nizam Ahmed, and 1 Donald W. Gross ( 1 Comprehensive Epilepsy Program, University of Alberta Hospital/Stollery Childrens Hospital, Edmonton, AB, Canada ) Rationale: Transition from pediatric to adult health care services can be difficult for patients and families. Barriers to transition have been identified in the literature, with little pertaining to epilepsy. The University of Alberta Comprehensive Epilepsy Program encompasses both pediatric and adult services within the same facility. Adolescent and family needs can be addressed within the nursing scope of practice. The purpose of this project was to develop and evaluate a transition program for adolescents with epilepsy and their families who are being transferred from a pediatric to an adult epilepsy program. Methods: All patients referred from the pediatric to adult epilepsy clinic were included in this study. Patient independence and the learning needs of both patients and parents were evaluated with standardized questionnaires. During the transition clinic visit (which occurred prior to the first appointment with the adult neurologist), a standardized education program was provided with patient and family needs incorporated into teaching. Evaluations were completed following the transition appointment and after the adult neurologist initial visit. Results: To date six patients have completed the transition process (one of which had significant developmental delay). The majority of adolescents had minimal knowledge to manage their own healthcare (i.e. name and dosage of medications) and lacked basic information regarding epilepsy (i.e. first aid). In identifying their own learning needs, considerable discrepancies were observed between adolescents and parents in particular relating to the areas of driving, alcohol and birth control. Patients and parents were unanimous regarding the benefits of going through the transition clinic. Conclusions: Our findings support the benefits of a formalized transition process between pediatric and adult epilepsy programs. The development and implementation of a nurse-led adolescent epilepsy transition program provides an opportunity to educate, encourage independence and alleviate fears during a period of time when other natural transitions are occurring. 1 Marian J. Kolodgie, 1 Audrey H. Scully, 1 Joan A. Conry, 1 Jay Salpekar, and 1 Andrew Renuart ( 1 Neurology, Children's National Medical Center, Washington, DC ) Rationale: Children with epilepsy may benefit from single-daily dose Depakote ER. In the presence of developmental delay parents may have concerns regarding their child's ability to swallow extended release tablets. We developed a training protocol aimed at teaching parents how to transition their child from Depakote Sprinkles to Depakote ER tablets. Methods: Subjects included 10 children diagnosed with epilepsy and developmental delay, and their parents. Subjects had no known diagnoses of feeding disorders, swallowing problems, or food aversion. Parents underwent a three step training program; 1.) Parents were interviewed about their child's swallowing abilities and previous pill-taking history. 2.) Parents received instruction on swallowing mechanics and behavior modification techniques. 3.) Pill administration was modeled by the clinic nurse and/or epilepsy nurse practitioner with each child. Mock tablets of incremental size were used during the training sessions. Children were allowed to swallow the pills with soft food or liquid but were not permitted to chew the tablets. Parents were instructed to practice with their child at home and provide a return demonstration at follow-up clinic visits. Results: Nine subjects completed the protocol successfully and transitioned from sprinkles to extended release tablets within the study timeframe. The tenth child acquired pill-taking skills shortly after the last study visit and is now taking extended release tablets. None of the subjects experienced choking, gagging, or other serious symptoms of distress. Conclusions: Developmental delay need not be an exclusionary factor in considering children's ability to swallow medication in pill form. Children with epilepsy and developmental difficulties can learn to swallow tablets through structured behavioral interventions. The ability to swallow tablets may contribute to overall compliance with treatment. (Supported by Abbott Laboratories.) 1 Sheila Koutsogiannopoulos, 1 Francine Adelson, and 1 Frederick Andermann ( 1 Nursing, Montreal Neurological Hospital, Montreal, QC, Canada; Social Work, Montreal Neurological Hospital, Montreal, QC, Canada; and Neurology, Montreal Neurological Hospital, Montreal, QC, Canada ) Rationale: To explore circumstances around the emergence of a first seizure in adult onset epilepsy; i.e.what trends, if any, exist in the quality and quantity of life events occurring in the 12 months preceding the onset of an initial epileptic seizure. Research suggests that how individuals adjust to significant life events may explain the time of onset of a disease or chronic disorder. (Holmes, T.H., Rahe, R. The Social Readjustment Rating Scale, J Psychosom Res. 1967. 11:213–218). Although stress is recognized as a major precipitant for seizures in patients with a known seizure disorder, few studies, in any, have explored the cluster of life events associated with the onset of a first seizure in adult onset epilepsy. We also explored patients' beliefs about the causes of their epilepsy, their knowledge of seizure triggers and their sense of control. Methods: A qualitative study using a phenomenological approach. Patients were selected prospectively from the M.N.H. epilepsy clinic and monitoring unit. Interviews were audio-taped using a semi-structured interview guide and a life experiences survey. Interviews continued until data saturation was achieved and themes identified. Results: All patients reported significant life events experienced in the 12 months prior to the onset of their first seizure. Different themes were noted between men and women and among women of different age groups. All male responders reported primarily work related stressors prior to their first seizure. When significant others were present during the interviews, family stresses were also identified. Young women in their 20's identified a perception of diminished self efficacy in completing developmental tasks. Middle aged women described major losses and disruption in family relationships. None of the respondents reported irrational beliefs about the cause of their epilepsy. 93% of respondents were able to identify their seizure triggers and planned strategies to control them. The majority of patients also expressed the belief that stress increased the frequency of their attacks. Conclusions: A positive relationship between significant life events and timing of a first seizure in adult onset epilepsy was demonstrated in this limited sample. A larger sample is needed to further evaluate this finding. The majority of the patients interviewed believe that stress and seizures are related. This adds to what has been reported in other studies (Antebi, D., Bird, J. The Facilitation and Evocation of Seizures. Br J Psych. 1993.162: 759–64). The patients had the perception of high self control, were able to identify a relationship between their seizures and likely triggers, and discuss strategies to control such triggers. This study highlights the need to specifically inquire about stressors which may be present and may play a role in the triggering of adult onset epilepsy. (Supported by Savoy Foundation.) 1 Angela M. McNelis, 1 Jennifer E. Myers, 1 Joan K. Austin, and 2 David W. Dunn ( 1 School of Nursing, Indiana University, Indianapolis, IN ; and 2 School of Medicine, Indiana University, Indianapolis, IN ) Rationale: Parents of children with epilepsy often lack seizure management skills due to inaccurate or incomplete information and knowledge about their children's seizure conditions. Moreover, parents have a great number of fears and worries associated with their child's condition. The purpose of the study was to test the effectiveness of a psychoeducational intervention designed to improve seizure management skills by reducing concerns and fears and improving knowledge about seizures. Methods: A quasiexperimental design was used to examine the effectiveness of the Be Seizure Smart intervention in a sample of parents of children with new-onset seizures. Based on each individual's pre-assessment, customized information was sent to meet the individual's unique needs. Once the information was received, a series of four 30-minute phone calls approximately one week apart were made to address the parent's identified areas of need. Pre and post assessment measures included general concerns and fears about seizures (9 items), concerns about seizure management (8 items), psychosocial care needs (6 items on information and 8 items on support), uncertainty (31 items), knowledge about seizures (20 items), mood associated with their child's seizure condition (10 items), and satisfaction with family functioning (5 items). Results: The sample consisted of 22 mothers, 2 fathers, and 1 grandmother. The children (14 females and 11 males) ranged in age from 5 to 13 years, with a mean age of 8.2 years. Parents had significantly lower scores for concerns and fears (p < .001), concerns about seizure management (p < .001), need for information and support (p < .001), and uncertainty in illness [total uncertainty (p < .001), ambiguity (p < .001), lack of clarity (p < .001), and lack of information (p < .05)] after the intervention than before. As predicted, parents had significantly higher scores post intervention for knowledge about seizures (p < .001) and mood (p < .001). Although parent scores on satisfaction with family functioning were more positive and scores on unpredictability were lower, results did not reach statistical significance. Conclusions: Overall, Be Seizure Smart was a successful intervention program. A major strength of the program was that it was tailored to meet each parent's individual needs, allowing parents to discuss specific concerns with the research nurse. The program can be easily transferable to the clinical setting as the pre-assessment takes only 10 minutes and the 1-page fact sheets are already developed. Follow-up phone calls to discuss the written materials could prove to be cost effective by decreasing the number of office visits and physician calls. (Supported by: Funded by grant # P30 NR05035 (PI: Austin, Joan K.) from the National Institute of Nursing Research (NINR) to the Center for Enhancing Quality of Life in Chronic Illness at Indiana University School of Nursing.) 1 Christine A. Restivo-Pritzl, 1 Christopher M. Inglese, 1 Veronica N. Sosa, and 1 George L. Morris III ( 1 Regional Epilepsy Center, St. Luke's Medical Center, Milwaukee, WI ) Rationale: Health-related quality of life (H-RQOL) is a middle range nursing theory that reflects the nursing profession's emphasis upon holistic and individualized patient care. Simply defined, the concept of H-RQOL may represent an individual's satisfaction with a specific area of life that he or she has identified as vital. Wilson and Cleary identify five determinants that influence and are influenced by overall QOL to produce an individual's H-RQOL: biological and physiological variables, symptoms, functional status (including the physical, social, role, and psychological/spiritual domains), and general health perceptions. This model illustrates how the diagnosis of epilepsy may exert influence that is far-reaching and pivotal upon all aspects of an individual's life. Children and adolescents are in the midst of vital developmental stages, with the desired end result being the attainment of a sense personal and interpersonal competence as well as personal identity. Anxiety related to the fear of experiencing seizures in public, feelings of “different-ness” from peers, dependence upon others, and the stigma that plagues the diagnosis of epilepsy may present a significant obstacle to an individual's psychosocial development, and may result in problems that affect every aspect of every day living. The purpose of this project is to explore the actual impact of the epilepsy diagnosis upon the H-RQOL among the children and adolescents care for at a regional epilepsy center, as well as to determine the necessity of including an abbreviated H-RQOL evaluation as part of the nursing assessment at clinic visits. Methods: An abbreviated H-RQOL assessment tool was developed based upon the QOLIE-31 scale. Questions were selected to represent areas of life that were deemed significant to children of school age and adolescents–self-concept, family life, social life, and medications. During scheduled appointments, as part of the interval nursing assessment, patients were provided a scoring tool and asked scripted questions by a registered nurse. Results: To date, five children have been interviewed, ranging from 10 to 15 years of age. When asked to rate their current life satisfaction on a Likert scale of 1 (“Very unhappy with life right now”) to 5 (“Very happy”), the average response was 2.4. All of the respondents stated that they worry about having a seizure, as well as feel that having seizures affects their grades. Two of the children interviewed stated that their epilepsy makes them feel different from others. Conclusions: Data collection is ongoing, and it is impossible to draw accurate conclusions with such a small sample size. However, it is clear from these few responses that the diagnosis of seizures is one that affects many areas of a child's life, and inclusion in the nursing assessment may be crucial to limit negative impact upon psychosocial development. 1 Deborah L. Shulman, 1 Bryn M. Corbett, 1 Patricia H. Miller, 1 Luann C. Helepololei, 1 Lisa M. Tapsell, 1 Katherine H. Noe, 1 Joseph F. Drazkowski, and 1 Joseph I. Sirven ( 1 Neurology, Mayo Clinic Hospital, Phoenix, AZ ) Rationale: A considerable amount of information is presented to the patient prior to their EMU admission. Much of the information is provided in an educational booklet that all patients receive from the physician during their medical appointment or in the mail after the admission date has been scheduled. Many patients have stated during their admission that they were not informed of certain issues pertaining to an EMU stay. These issues include but are not inclusive to; memory testing, use of a safety belt, and the necessity of staying in their room while being closely monitored. Some patients become upset about not being aware of aspects of their stay and become frustrated when they realize the implication of how being on the EMU affects them. A comprehensive EMU booklet is given to every patient preadmission, however, it is unclear if the information within the booklet was presented but not processed or if it was presented at all. A brief questionnaire was constructed to help guide the formation of an educational tool. This will enable us to provide adequate patient education and set appropriate expectations to promote better health outcomes Methods: Patients who were admitted to the EMU in April 2006 were surveyed by a 12 question instrument designed to assess expectations prior to the admission. Surveys were conducted by telephone retrospectively. Some aspects of the survey included; assessment of knowledge of the use of safety belts, memory testing, use of sleep deprivation to invoke seizures, use of an intravenous cannula, and if the patient received the information booklet. Results: 12 surveys were completed, 4 male and 8 female with the age range being 37–77 years and 52 the average age of respondents. Fifty-eight percent had received and read the EMU information booklet, however, these same patients all claimed they did not know they would have memory testing. 42% claimed they did not know about the use of a safety belt, and 85% did not know they would be sleep deprived. This information is contained in the booklet, and 75% of all respondents felt they were able to ask questions and discuss expectations prior to the admission. Conclusions: It would appear that adequate patient education is provided but not necessarily understood despite receiving an EMU booklet and having the opportunity to discuss its contents. This approach may not be enough to insure positive EMU outcomes that we seek. Supplementary education is needed which could include a tour of the EMU prior to admission or assessing how patients themselves define the best method for them to learn. This may assist with setting appropriate expectations to promote better health outcomes. A larger population based study is needed to define how to best structure educational programs relating to diagnostic epilepsy procedures in order to meet the needs of our patients. 1 Siv Skarstein, 1 Vibeke Snarseth, and 2 Erik Taubøll ( 1 National Centre for Epilepsy, Division of Clinical Neuroscience, Rikshospitalet-Radiumhospitalet, Oslo, Norway ; and 2 Department of Neurology, Division of Clinical Neuroscience, Rikshospitalet-Radiumhospitalet, University of Oslo, Oslo, Norway ) Rationale: Patients with epilepsy and autism represent a complex group that require specialist treatment and care. At the National Centre for Epilepsy we experienced a high readmission rate for this patient group. Carers expressed uncertainty on how best to manage these patients and their seizures. The aim of this study was to develop an educational program to increase competence among carers, thereby reducing readmission to a specialist epilepsy hospital. Methods: Sixteen consecutive adult patients (7 women, 9 men) with autism and difficult to treat epilepsy admitted to the National Centre for Epilepsy, Sandvika, Norway, from 01.01.2004 to 12.31.2005 were included. A three-phase, standardized program was designed. This consisted of: 1) a pre-hospitalization visit to establish patient needs with regard to the management of epilepsy and psychosocial problems, 2) a hospitalization phase where the individual needs of the patient revealed in phase 1 were further defined. The carers were given specialized and individualized information about epilepsy and behavioural/psychosocial problems relating to their patient, and 3) a post-hospitalization phase consisting of an individual plan and a follow-up visit at home. A survey for carer satisfaction was performed 1 month after discharge. Results: The main finding in this study is that only 1 of the 16 patients have so far been readmitted to the hospital (Mean observation time: 16.4 months, range: 8–33 months). The survey for carer satisfaction revealed that in 9 cases the carers felt that they managed the problems related to the patient's epilepsy better. In 11 cases, the initiatives suggested by the hospital were implemented at home. In 15 cases, the carers found that the defined needs of the patient established in the pre-hospital phase were adhered to. Conclusions: A new educational program aimed at increasing competence among carers of patients with epilepsy and autism was shown to be effective. The readmission rate to hospital was dramatically reduced. Carers and staff felt more secure and competent when dealing with this complex patient group. 1 Pamela L. Smith, 1 Jennifer M. Burgos, 1 George L. Morris, 1 Christopher M. Inglese, and 1 Veronica N. Sosa ( 1 Regional Epilepsy Center, Saint Luke's Medical Center, Milwaukee, WI ) Rationale: Lamictal is an approved antiepileptic drug used as add-on-therapy for partial seizures in the adult and pediatric population. It has also been approved as initial monotherapy in adults newly diagosed with seizures, as well as conversion of Lamictal add-on-therapy to monotherapy in adults with partial sizures. Serious rashes requiring hospitalization and discontinuation of treatment, have been reported with the use of Lamictal. The incidence of these rashed is about 0.8% in the pediatirc population (age 16 and under) and 0.3% in adults receiving Lamictal as adjunctive therapy for epilepsy. Other then age, there are no known factors that could be identifyers in predicting the rash occurrence. Nearly all cases of serious rashes have occurred within 2–8 weeks of initiation of treatment. However, rare cases have been reported after prolonged treatment. Methods: To date, a retrospective analysis of 151 medical records identified 22 adults and 4 pediatric patients (age 16 and under) on Lamictal therapy admitted for inpatient VEEG monitoring since November 2002. Results: The 22 adults or 14.57% of the admitted population, had an average hospital length of stay of 3.2 days and were receiving an average daily dose of Lamictal 400 mgm. The 4 pediatric patients or 2.65% of the admitted population, had an average hospital lenth of stay of 7.2 days and were receiving an average daily dose of Lamictal 450 mgm. Upon discharge and dose resumption, none of the patients displayed any evidence of rash. Conclusions: In this study, we saw that both adult and pediatric patients can have their Lamictal dose discontinued and reintroduced without the emergence of a serious rash. Data collection is ongoing and needs to have similar outcomes to validate these outcomes. 1 Chase A. Allen, and 1 Malachy L. Bishop ( 1 Rehabilitation Psychology and Special Education, University of Wisconsin-Madison, Madison, WI; and Special Education and Rehabilitation Counseling, University of Kentucky, Lexington, KY ) Rationale: The problematic employment situation for people with epilepsy has been well established. The unemployment rate experienced by people with epilepsy has frequently been shown to be higher than that found in the general population. Numerous efforts at understanding the employment problems faced by persons with epilepsy have revealed a complex interrelationship of causes and explanations, including seizure-related variables, psychosocial factors, negative employer attitudes and discrimination, and fear of stigma and discrimination. In an effort to further clarify the situation and update understanding of changing employer attitudes, this research explored employer attitudes toward epilepsy as compared to other chronic conditions, and the implications of describing one's epilepsy using different terms (seizure condition, seizure disorder, epilepsy). Methods: In this survey-based research we surveyed 50 human resources professionals and employers in a Southeastern United State. We presented the employers and HR professionals with several descriptions of hypothetical applicants with various chronic conditions (e.g., AIDS, epilepsy, mental retardation, cancer, heart disease) and asked them to rank and rate the applicants based on their willingness to hire a similar individual at their company. The influences of work experience, education, and other demographic variables were controlled. In addition, we varied the use of the terms seizure condition, seizure disorder, and epilepsy in describing the individual with epilepsy. Analysis of variance and descriptive statistics were used to analyze the results. Results: Data collection is currently ongoing, and full results will be presented, however results to date are consistent with prior similar research concerning employers' attitudes toward epilepsy and hiring individuals with epilepsy, relative to other conditions. The use of the term epilepsy appears to be less positive from the employers' perspective that the alternatives, however the results are not yet conclusive. Conclusions: The results have important implications for epilepsy professionals engaged in assisting persons with epilepsy in seeking and maintaining employment. The present study highlights, in particular, the ongoing concern about epilepsy-related stigma in the area of employment. 1 Malachy L. Bishop, and 1 Chase A. Allen ( 1 Special Education and Rehabilitatio