Effect of a primary care based epilepsy specialist nurse service on quality of care from the patients' perspective: results at two-years follow-up. A psychosocial self-management program for epilepsy: a randomized pilot study in adults. A structured, nurse-led intervention program improves quality of life in patients with epilepsy: a randomized, controlled trial. Newly diagnosed epilepsy: can nurse specialists help? A randomized controlled trial. Epilepsy Care Evaluation Group. Feasibility and effects of nurse run clinics for patients with epilepsy in general practice: randomised controlled trial. Epilepsy Care Evaluation Group. Implementation strategies for a Scottish national epilepsy guideline in primary care: results of the Tayside Implementation of Guidelines in Epilepsy Randomized (TIGER) trial. A telephone-based self-management program for people with epilepsy. An evaluation of the impact of health worker and patient education on the care and compliance of patients with epilepsy in Zimbabwe. The effect of a special nurse on patients' knowledge of epilepsy and their emotional state. Epilepsy Evaluation Care Group. Psycho-educational therapy among Nigerian adult patients with epilepsy: a controlled outcome study. Cognitive-behavior therapy with adult patients with epilepsy: a controlled outcome study. [Education of children with epilepsy and their parents by the modular education program epilepsy for families (FAMOSES)--results of an evaluation study]. Sepulveda Epilepsy Education: the efficacy of a psychoeducational treatment program in treating medical and psychosocial aspects of epilepsy.
Epilepsy specialist nurses have the potential to improve the quality of care of community-based patients with epilepsy, although evidence of their effectiveness is limited by the lack of formal or long-term evaluation. Results of a controlled trial that assessed the effectiveness of a primary care based specialist nurse-led service suggested improvements in communication and satisfaction but not health status at one-year follow-up. A second follow-up was conducted to assess the effects after two years. Patients who reported having seen the nurse at least once in the two years ('users') were compared with those who had not ('non-users'). Comparisons between users and non-users were adjusted for baseline differences. Results were based on 40% of all 595 adult patients known to have epilepsy in 14 general practices and who answered questionnaires at baseline and two years later. The new epilepsy service was used more by those with greatest needs for care. Users of the new service were significantly more likely than non-users to have discussed 8 of 11 topics asked about epilepsy [odds ratios (ORs) ranging from 2.42 to 7.91] with their general practitioner (GP), and 2 of the 11 topics with the hospital doctor (ORs 5.59, 5. 74). Service users were significantly less likely than non-users to feel their GP knew enough about epilepsy [OR 0.27, 95% confidence intervals (CI) 0.74-0.98], and significantly more likely to report epilepsy as having an adverse impact on 3 of 10 areas of everyday life (ORs ranging from 2.09 to 2.50). Users were more likely than non-users to have seen their GP for any reason in the previous year and to change their medication from use of more than one antiepileptic drug to monotherapy, although findings were not significant. Results suggest that the epilepsy specialist nurse service is not a cost-reducing substitute, particularly for general practitioner care, but it appears to improve communication and prescribing of monotherapy, and increases access for the most needy. The service may, however, have an adverse impact on patients' perceptions of the effects of epilepsy on aspects of everyday life.
                Copyright 1999 BEA Trading Ltd. The goal of the work described here was to develop and pilot a theoretically based self-management intervention in adults with epilepsy.
                A randomized, controlled trial examined intervention effectiveness of a 6-week psychosocial intervention designed to improve self-efficacy and quality of life for 61 adults with diagnosed epilepsy. Measures included the Quality of Life in Epilepsy-89 inventory (QOLIE-89), the Washington Psychosocial Seizure Inventory (WPSI), a locus of control scale (LOC), and the Epilepsy Self-Efficacy Scale-2000 (ESES). Group differences were examined between groups using analysis of covariance.
                There was a significant improvement in the QOLIE-89 Role Limitations-Emotional score in the treatment group at follow-up, but no significant differences in overall quality of life. Strong and significant correlations were observed between outcome measures.
                Although the intervention had little effect on improving overall quality of life, we observed promising trends in postintervention group comparisons linking self-efficacy and other psychosocial factors with quality of life. Intervention material can be modified for stage-based behavior change and retested in another study. We tested the hypothesis that structured epilepsy nursing improves quality of life (QOL). One hundred fourteen adult patients with uncontrolled epilepsy were randomly assigned to either an intervention group or a control group. The intervention group was offered an interactive, 1-day group education program followed by extended nurse follow-up and counseling. The nurse was present at as many outpatient consultations as possible and performed repeated consultations by telephone. All patients completed the QOLIE-89 before randomization and after 2 years. QOL was significantly improved from inclusion to completion of study in the intervention group (P=0.019), mainly in the subitems for Health Discouragement (P=0.01), Medication Effects (P=0.035), and Physical Role Limitations (P=0.05). To our knowledge, this is the first study to demonstrate a significant effect of a structured nurse-led intervention program in QOL of patients with epilepsy. To describe a group of people with newly diagnosed epilepsy and to test the effect of an epilepsy nurse specialist on patients' knowledge of epilepsy, satisfaction with the advice provided, and psychological well-being.
                Neurologists in the United Kingdom (U.K.) recruited adults with newly diagnosed epilepsy. Patients were randomized to receive the offer of two appointments with an epilepsy nurse specialist or usual medical care. The main outcome measures were a questionnaire assessing patients' knowledge of epilepsy, the Hospital Anxiety and Depression Scale, and patients' reported satisfaction with the advice and explanations provided on key epilepsy-related topics.
                Ninety people with new epilepsy completed the trial. At baseline, fewer than half the patients reported having been given enough advice on epilepsy, and there were important differences in patients' knowledge of epilepsy. Lack of a U.K. school-leaving examination pass (General Certificate School Examination) was associated with lower knowledge of epilepsy (p = 0.03). At follow-up, the patients randomized to see the nurse specialist were significantly more likely to report that enough advice had been provided on most epilepsy-related topics compared with the control group. There were no significant differences in knowledge of epilepsy scores. However, there were significant differences in the group who, at baseline, had knowledge scores in the lowest quartile; those randomized to the nurse had higher knowledge scores (42.7 vs. 37.2; p < 0.01). Compared with doctors, the nurse was highly rated for providing clear explanations.
                Patients who have less general education have less knowledge of epilepsy. The introduction of a nurse specialist in epilepsy is associated with a significant increase in patient reports that enough advice has been provided. Nurse intervention appears to help those with the least knowledge of epilepsy improve their knowledge scores. To test the feasibility and effect of nurse run epilepsy clinics in primary care.
                A randomised controlled trial of nurse run clinics versus "usual care."
                Six general practices in the South Thames region.
                251 patients aged over 15 years who were taking anti-epileptic drugs or had a diagnosis of epilepsy and an attack in the past two years who met specified inclusion criteria and had responded to a questionnaire.
                Questionnaire responses and recording of key variables extracted from the clinical records before and after the intervention.
                127 patients were randomised to a nurse run clinic, of whom 106 (83%) attended. The nurse wrote 28 letters to the general practitioners suggesting changes in epilepsy management. For this intervention group compared with the usual care group there was a highly significant improvement in the level of advice recorded as having been given on drug compliance, adverse drug effects, driving, alcohol intake, and self help groups.
                Nurse run clinics for patients with epilepsy were feasible and well attended. Such clinics can significantly improve the level of advice and drug management recorded. To determine the effectiveness of two dissemination and implementation strategies to implement a national guideline for epilepsy management in primary care settings.
                Three-arm cluster-randomized controlled trial. The participants were general practitioners from 68 practices in Tayside, Scotland, and 1,133 of their patients with self-reported epilepsy treated with antiepileptic medications (AEDs). Practices were randomized blind to a control, intermediate, or intensive intervention. Control: Postal dissemination of a nationally developed clinical guideline. Intermediate intervention: Postal dissemination of the guideline supported by interactive, accredited workshops, and dedicated, structured protocol documents. Intensive intervention: Intermediate intervention plus a nurse specialist who supported and educated practices in the establishment of epilepsy review clinics. The primary outcome was the SF-36 health-related quality-of-life instrument. Secondary measures were a battery of prevalidated epilepsy-specific quality-of-life instruments. These were administered at baseline and after the intervention phase. Process of care was assessed by case-note review on number of review meetings and counseling sessions for epilepsy before and after the interventions.
                None of the intervention groups showed any change in the primary or secondary outcome measures or process-of-care measures.
                None of the intervention strategies led to improvements in patient quality of life or quality of epilepsy care. Further research is needed to discover why the interventions failed, to identify barriers to adoption of guidelines, and to develop strategies that might improve implementation and uptake in the future. The study was conducted to test the feasibility of a telephone-based self-management program for adults with epilepsy. The program was based on social cognitive theory and principles of motivational interviewing (MI). Twenty-two adults with epilepsy were recruited from hospital-based epilepsy clinics. The mean age of participants was 43 years, and 68% were men. Participants were randomly assigned to the intervention or control group. Those in the intervention group received a five-session intervention with a nurse trained in MI counseling. Following an in-person introductory session, the remaining four sessions were conducted by phone. Ninety-five percent of the 55 planned MI sessions and the 44 planned courtesy calls for those in the control group were completed, demonstrating high acceptance of the program. Participants were very satisfied with the program and noted the benefits of the telephone delivery method. Analysis of outcomes provided support for continued development and testing of the program. The use of primary health care personnel to identify cases of epilepsy and initiate simple treatment protocols has been advocated as a solution to the numeric inadequacy and uneven distribution of medical manpower available for the management of epilepsy in developing countries. This study sought to evaluate the effectiveness of primary health care nurses in the diagnosis and management of epilepsy, as well as the impact of patient-information pamphlets on drug compliance and clinic attendance of patients with epilepsy.
                Primary health care workers from 24 clinics in the Zvimba district in Zimbabwe attended a workshop to improving their knowledge in the diagnosis and management of generalized tonic-clonic seizures. Half of these clinics (experimental group) subsequently received patient-information pamphlets for distribution to patients and relatives, whereas the other half (control group) did not. Frequency of clinic attendance, mean seizure frequencies, and mean serum levels of phenobarbitone were compared at baseline and at 6 months after intervention in patients within each group, and at 6 months after intervention between both groups.
                Community health worker education led to a 74% increase in patient recruitment as well as a marked improvement in patient drug compliance over the 6-month study period. The use of patient-information pamphlets led to a marked reduction in patient default from clinic follow-up, but did not appear to influence drug compliance or seizure frequency.
                The benefits of these simple and inexpensive interventions make a strong case for their widespread implementation for improved epilepsy care not only in Zimbabwe, but also in other developing countries. People with epilepsy often report being given insufficient information and support. However, there is little evidence from general practice about how much they know and how they feel.
                To describe social differences in the knowledge of epilepsy of people with the condition and test the potential effect of a nurse intervention in general practice on patients' knowledge and depression levels.
                A questionnaire that included measures of knowledge, anxiety, and depression was sent to people with epilepsy aged over 15 years who were registered with 37 general practitioners. Responders were randomized to a controlled trial, offering either two appointments with an epilepsy nurse or usual care. Six months later they were reassessed.
                Two hundred and fifty-one out of 283 (89%) of the patients with epilepsy completed questionnaires and entered the study at Stage 1. One hundred and ninety-six out of 232 (84%) of those who entered the study, who remained in the practices and were eligible, returned questionnaires at Stage 2. The average duration of epilepsy was 23 years (range 2-79 years). There were significant differences in patients' levels of knowledge of epilepsy at Stage 1. Younger people, those who had left school after 16 years of age, those with GCSEs, and people who belonged to self-help groups had higher knowledge levels, and these were independent effects. Older people and those with a recent epilepsy attack had significantly higher depression scores. Knowledge scores did not differ significantly after the nurse intervention (Stage 2). At Stage 2, the risk of depression was less in the group randomized to be offered nurse input; the effect was mainly in a subgroup of patients with no recent epilepsy attack; their risk of depression was a third of the risk in the control group.
                Knowledge of epilepsy differs significantly, with social factors and self-help group membership having independent effects. A nurse-run clinic reduced the risk of depression for people with no recent epilepsy attack, but knowledge levels were not affected. This does not exclude the potential for patients learning more about epilepsy; it may be useful to suggest that patients join self-help groups early on. Psychological interventions in relation to epilepsy are worthy of empirical investigation since there is broad agreement that the psycho-social problems of epilepsy are often more disabling than the seizure attacks. The present study using a controlled outcome design evaluated the efficacy of a 2-day psycho-educational program among patients with epilepsy in Nigeria. The psycho-educational program is the consequence of a two-stage study design, which set out to identify and evaluate psycho-social factors that determine interictal psychopathology in people with epilepsy. Thirty out-patients matched according to seizure type and frequency of seizures were randomly assigned to treatment (n = 15) or waiting-list control (n = 15) groups. The major outcome measures used were knowledge about illness schedule, the Becks depression inventory and the Crown-Crisp experiential index. Significant differences between the two groups were found on the three major scales used. The treatment group by within-group analyses, showed a substantial significant decrease in level of depression, a significant increase in the knowledge about epilepsy as well as a significant decrease in all measures of neurotic disorders except for hysterical sub-scale. The present study evaluated the efficacy of group cognitive-behavior therapy for the alleviation of psychosocial problems and reduction of seizures with adult epileptic patients. Twenty-seven outpatients were randomly assigned to one of three groups: Cognitive-Behavior Therapy, Supportive Counseling (attention-placebo control), and Waiting list (no treatment control). The major outcome measures used were: patient's, neurologist's, and therapist's global ratings of psychological adjustment, patient's target complaints and weekly seizure frequency, patient's and neurologist's ratings of seizure control, the Minnesota Multiphasic Personality Inventory, the Washington Psychosocial Seizure Inventory, and the Beck Depression Inventory. No significant differences were found among the three groups on these measures except for therapist's global ratings of psychological adjustment, on which both the Cognitive-Behavior Therapy and Supportive Counseling groups improved significantly after therapy, but the Waiting List control group did not. Overall, little support was found for the efficacy of group cognitive behavior therapy (eight 2-h weekly sessions) for the reduction of psychosocial difficulties or seizures. Implications of the present findings are discussed, with the need for further controlled outcome research stressed. The aim of the study was to evaluate the efficacy of the modular educational program for children with epilepsy and their parents (FAMOSES). This program was developed by an interdisciplinary project group to improve knowledge, coping, treatment outcome, emotional and practical adaptation to the condition.
                A prospective, controlled, multi-center, pre-post study design was used to examine the efficacy of the program in the treatment group compared to the waiting group (control group). Questionnaires included epilepsy specific scales regarding knowledge, attitudes, restrictions in daily living, epilepsy related fears, coping with the chronic disease and generic instruments (quality of life, KINDL). 55 parents of the treatment group completed the questionnaires three months before the course and three months later; the corresponding waiting group included 48 parents. Respectively, 31 children, who participated in the program, completed the questionnaires immediately before the course and three months later; the corresponding waiting group included 19 children.
                Children, who attended the program, showed improvements in the domains perceived restrictions (significant, medium effect size), absence from school and seizure frequency. Not significantly greater compared to the control group were the improvements of knowledge, attitudes and fears regarding to the epilepsy. Parents of the treatment group showed significant enhancements in epilepsy specific knowledge (large effect size), attitudes toward the epilepsy, management of epileptic seizures and significant reductions of fears and restrictions of their child with epilepsy (small to medium effect sizes). The present study evaluated the efficacy of the Sepulveda Epilepsy Education program (SEE), using a controlled outcome design. SEE is a 2-day psychoeducational treatment program designed to provide medical education and psychosocial therapy. Thirty-eight outpatients, matched according to seizure type and frequency, were randomly assigned to treatment (n = 20) or waiting-list control (n = 18) groups. The major outcome measures used were a 50-item true-false test specifically designed to evaluate the SEE program, the Washington Psychosocial Seizure Inventory, the Beck Depression Inventory, Lubin's Depression Adjective Checklist, the State-Trait Anxiety Inventory, the Acceptance of Disability Scale, and Sherer's Self-Efficacy Scale. Significant differences between the two groups were found on the three major subscales of the 50-item true-false test. The treatment group demonstrated a significant increase in overall understanding of epilepsy, a significant decrease in fear of seizures, and a significant decrease in hazardous medical self-management practices. In addition, an objective measure of blood levels of antiepileptic drugs (AEDs) showed the treatment group to have a significant increase in medication compliance.
Two intervention types, the specialist epilepsy nurse and self-management education, have some evidence of benefit. However, we did not find clear evidence that other service models substantially improve outcomes for adults with epilepsy. It is also possible that benefits are situation specific and may not generalise to other settings. These studies included only a small number of service providers whose individual competence or expertise may have had a significant impact on outcomes. At present it is not possible to advocate any single model of service provision.