Levels of stigmatization of patients with previously untreated epilepsy in northern Ecuador.

As part of a population-based study of epilepsy in northern Ecuador, 215 patients with epilepsy and 125 controls were given a questionnaire designed to elicit the degree of stigma associated with epilepsy. Evidence for stigma was also sought from local medical personnel. 144 patients and 98 controls were questioned again 12 months later at study completion to see whether their perceptions had changed. Both intellectual and physical abilities of people with epilepsy were regarded as low by controls, and this opinion did not change over the study period. Observations by medical personnel also suggested stigmatizing attitudes in the community. The number of patients reporting problems with their marriage or childbearing as a result of their epilepsy did not alter over the 12-month period, unlike their estimates of their own intellectual and physical capacities which had significantly improved. Conversely, although their expectations of employment outside the home had diminished, the reasons stated for this related to continuing epilepsy and not to the objections of fellow workers and employers.

The characteristics of epilepsy in a largely untreated population in rural Ecuador.

A house-to-house survey of epileptic seizures covering a population of 72,121 persons was carried out in a rural area of northern Ecuador. A cascade system of diagnosis was used to identify all cases of epileptic seizures in this population. 1029 cases were found, of whom 881 were considered to be definite cases and 148 were possible cases. Of the 1029 cases, 56% had active epilepsy. The lifetime prevalence rate was found to lie between 12.2 and 19.5/1000 and the prevalence of active cases between 6.7 and 8.0/1000. An annual incidence rate of between 122/100,000 and 190/100,000 was estimated. Seizure type was classified without EEG data and almost half of the cases had partial seizures. In 27% of cases an aetiology was proposed on clinical grounds. This is one of few reported studies of a population that has been largely unexposed to antiepileptic drugs, providing an opportunity to study the natural history of the untreated condition. It has been suggested that treatment in newly developing epilepsy will prevent its development to a chronic condition. Only 37% of the 1029 cases had ever received antiepileptic drugs, and only 12% of the cases were taking them at the time of the survey. Despite this, a high rate of inactivity was observed, with 44% of all cases free of seizures. Nearly two thirds of the inactive cases identified had never received treatment with antiepileptic drugs. In a subgroup of untreated cases with an active condition, treatment with antiepileptic drugs was initiated and was highly effective even in cases with a long previous history. Thus the findings from this study suggest that the development of epilepsy resistant to therapy is not always associated with a long duration of untreated epilepsy.

Antiepileptic drug treatment in a community health care setting in northern Ecuador: a prospective 12-month assessment.

The results of a prospective assessment of antiepileptic drug treatment carried out over a 12-month period, in the context of existing community health care in a rural area of a developing country (a highland region of northern Ecuador), are reported. A house to house survey defined all patients in the area with a history of epileptic seizures, and 192 patients with active epilepsy were recruited into the programme. These patients were randomised to treatment with carbamazepine or phenobarbital, and 139 completed the assessment. Treatment was carried out by health visitors and rural doctors, monitored by a team of neurologists, and standard treatment regimens were used. Treatment was effective in controlling seizures, 53% of the patients were rendered entirely seizure free in the second 6 months of therapy, and a further 14% had a 50% or more reduction in seizures. These results were similar to those reported in hospital based studies in developed countries. No significant differences were found between the efficacy and safety of phenobarbital or carbamazepine. Antiepileptic drug levels were monitored during the study, and ranges similar to those found in developed countries were recorded. Compliance was good. In view of the successful treatment in this community control programme, we would recommend that community programmes for the control of epilepsy in rural settings should be given a higher priority in the planning of health care provision than is commonly the case. Finally, the programme afforded the opportunity to study the efficacy of treatment in patients with chronic long-standing epilepsy, who had not been previously treated, and the results of this treatment were good.

Epileptic seizures in an Andean region of Ecuador. Incidence and prevalence and regional variation.

A large-scale neuro-epidemiological study was carried out in a population of 72,121 inhabitants of a region of Northern Ecuadorian Andean Sierra, to identify prevalence and incidence rates of epileptic seizures and to identify demographic and geographic variations in these rates. Calculations were made using three datasets. First, rates were calculated from all cases identified in the field (raw dataset); secondly, lower rates were calculated based on a further diagnostic and reclassification procedure (minimum estimated dataset); thirdly, higher rates were derived by calculating false negative rates from the screening procedures, and adding these to the cases actually identified (maximum estimated dataset). Lifetime point-prevalence rates between 12.2/1000 and 19.5/1000 were recorded (minimum and maximum estimated rates), and the prevalence of active epileptic seizures was between 6.7/1000 and 8.0/1000 (minimum estimated and raw datasets). Incidence rate ranging between 122/100,000/year and 190/100,000/year were found (minimum, estimated and raw datasets). A marked difference in prevalence rates was found in two subregions of the survey area, and also in urban and rural areas. The reasons for these differences were not identified.

Validation of a screening questionnaire for the detection of epileptic seizures in epidemiological studies.

A large-scale clinico-epidemiological study of epileptic seizures has been carried out in a highland area in northern Ecuador, South America. This paper describes the design and the two-staged validation procedures undertaken to authenticate the screening questionnaire, which was used to detect epileptic seizures in the community during this project. An initial questionnaire consisting of 20 questions was devised and then validated in a group of healthy subjects and a group of patients with known epileptic seizures. This questionnaire was found to have a sensitivity of 100% and a specificity of 50.8%. A cluster analysis of the responses rates was undertaken and a set of nine questions which presented a specificity of 92% and sensitivity of 98% were chosen to be used during the survey. The validation of this nine-question instrument was then undertaken by direct application to a general population of 72,121 persons. Positive, negative, false positive and false negative rates were derived. The screening instrument was found to have a sensitivity of 79.3%, a specificity of 92.9%, a positive predictive value of 18.3%, a negative predictive value of 99.6% and a Youden's index of 0.79. The methodology of the study and the instruments developed are recommended for future neuro-epidemiological work in epilepsy. The problems of validation are discussed, and previous epidemiological studies of epilepsy reviewed with special emphasis on the handling of questions of validation.

Help-seeking strategies for epilepsy by previously untreated patients in northern Ecuador.

Two hundred and fifteen patients with epilepsy and 125 controls were given questions designed to elicit their help-seeking strategies for the condition. This was part of a large-scale medical intervention study in a rural area of a developing country (the provinces of El Carchi and Imbaburra, northern Ecuador). Local medical personnel were also surveyed. One hundred and forty-four patients and 98 controls were questioned again 12 months after they had been enrolled in the intervention programme to see if their attitudes and practices had changed. Over the study period, belief in medical remedies, particularly those offered by the study, rose significantly among both controls and patients. Control readiness to consult local healers for help and belief in their effectiveness also rose, whereas patient belief in healer help, already significantly less at baseline because of previous negative experiences, had declined still further. Though no patients treated were on antiepileptic treatment at baseline, 71% claimed to have sought the help of allopathic practitioners at some point in the past, 35% 'many times'. Of these only 21% had ever been given antiepileptic drugs; some consultations were not at local health facilities. Thirty-two per cent of patients also claimed to have consulted traditional healers. The high number of patients claiming to visit doctors was not entirely confirmed in the medical evidence. Even this source, however, suggested more consulted doctors than expected from the observation that only 10% were on any kind of treatment at the start of the study (none on antiepileptic drugs).(ABSTRACT TRUNCATED AT 250 WORDS)

Effects of epilepsy on daily functioning in northern Ecuador: summary of findings of a population-based research project.

215 patients with epilepsy and 125 healthy controls were questioned on the effects of epilepsy on social functioning as part of a population-based study of epilepsy in Northern Ecuador. 144 of these patients and 98 of the controls were followed, over a period of 1 year during an intervention study and their response to treatment assessed. Economic, intellectual and social functioning were examined. In the patient group, function was affected in important areas, most clearly, work. The low opinion the community had of the intellectual and physical abilities of patients might affect a patient's own view of themselves and sometimes diminish their opportunity for development. At 12 months, as a result of treatment, a significantly lower level of patients reported effects on function in some areas, though control individuals' views of their functional impairment had not shifted to any extent. Moreover, despite improvement, more patients at 12 months acknowledged fear of seizures, especially their unpredictability, as a handicapping factor, particularly in working outside or away from home. This seems to indicate that even when seizures are controlled, for many patients, the uncertainties of the condition remain and continue to affect their view of their capabilities.

A large-scale study of epilepsy in Ecuador: methodological aspects.

The methodology is presented of a large-scale study of epilepsy carried out in a highland area in northern Ecuador, South America, covering a population of 72,121 people; The study was carried out in two phases, the first, a cross-sectional phase, consisted of a house-to-house survey of all persons in this population, screening for epileptic seizures using a specially designed questionnaire. Possible cases identified in screening were assessed in a cascade diagnostic procedure applied by general doctors and neurologists. Its objectives were: to establish a comprehensive epidemiological profile of epileptic seizures; to describe the clinical phenomenology of this condition in the community; to validate methods for diagnosis and classification of epileptic seizures by a non-specialised team; and to ascertain the community's knowledge, attitudes and practices regarding epilepsy. A sample was selected in this phase in order to study the social aspects of epilepsy in this community. The second phase, which was longitudinal, assessed the ability of non-specialist care in the treatment of epilepsy. It consisted of a prospective clinical trial of antiepileptic therapy in untreated patients using two standard anti-epileptic drugs. Patients were followed for 12 months by a multidisciplinary team consisting of a primary health worker, rural doctor, neurologist, anthropologist, and psychologist. Standardised, reproducible instruments and methods were used. This study was carried out through co-operation between the medical profession, political agencies and the pharmaceutical industry, at an international level. We consider this a model for further large-scale studies of this type.