Patients’ knowledge about their disorder: Perspective of patients with epilepsy in a tertiary health facility in southwestern Nigeria

Sunmonu, Taofiki; Afolabi, Olusegun T.; Komolafe, Morenikeji; Ogunrin, AO

doi:10.1016/j.yebeh.2010.12.030

Cited by 14 publications

(10 citation statements)

References 27 publications

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“…The negative impact of epilepsy on the ability of individuals to form long-lasting relationships was also shown in our study; among 113 individuals who were questioned about their marital status, the majority (64.6%) reported being unmarried or divorced. A clear description of patients’ condition was provided by the individual patient in only 12.8% of cases, which is in line with the findings of a study conducted in a tertiary health facility in south western Nigeria, where only 10.9% of patients had any insight into the aetiology of their condition [ 11 ]. Lack of adequate knowledge about their condition render PwE vulnerable to myths, stigma and exclusion from their social and family networks [ 12 ].…”

Section: Discussionsupporting

confidence: 77%

Living with epilepsy in Lubumbashi (Democratic Republic of Congo): epidemiology, risk factors and treatment gap

Bora¹,

Malamba-Lez²,

Luwa³

et al. 2015

Pan Afr Med J

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IntroductionEpilepsy is the most common of serious neurological disorders, yet despite considerable efforts, good access to medication, appropriate social and societal acceptance and acceptable quality of life (QoL) are difficult to achieve especially in developing countries. It is estimated that over 500,000 people suffer from epilepsy in the DRC. There is no report, in our knowledge on the epilepsy in Lubumbashi.MethodsA descriptive study was undertaken in individuals with a clinical diagnosis of epilepsy who presented at the CNPJG outpatient clinic in Lubumbashi over a 12 months period. A 64-item questionnaire was used to collect information from the patients. Case records were reviewed and relevant demographic, social, professional, medical history, medical condition data were extracted.ResultsAmong 3,540 patients who presented to a neuropsychiatric clinic run by the Fracarita charity over a 1-year period, 423 (11.9%) were identified as having epilepsy, and 179 were subsequently included in the survey after they (or their parent/guardian) provided informed consent and completed an EEG investigation. Data were collected using a standardized, 64-item questionnaire. Epilepsy had negative impact on the lives of individuals with the condition; 40.8% had either no education or had completed primary education only, 38.0% were unemployed and the majority (64.6%; n = 113) were unmarried or divorced. Family history of epilepsy (first or second degree) was present in 23.5% of cases. Other reported factors that could potentially precipitate epilepsy included obstetric and perinatal factors (15.1%) and central nervous system infections during infancy (8.4%). Consumption of alcohol or recreational drugs accounted for 10.6%. The treatment gap was above 67% and the delay between first seizure and first consultation was 15 months. When asked to describe their condition, or its cause, 55.3% of participants (or their families) considered epilepsy to be of spiritual/ religious origin, while 25.1% had almost no insight and could not provide any description.ConclusionThis first epidemiological study shows a high prevalence of epilepsy among patients presenting to the clinic in Lubumbashi, DRC, and reveals a significant treatment gap.

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Section: Discussionsupporting

confidence: 77%

Living with epilepsy in Lubumbashi (Democratic Republic of Congo): epidemiology, risk factors and treatment gap

Bora¹,

Malamba-Lez²,

Luwa³

et al. 2015

Pan Afr Med J

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“…Most studies that evaluate the level of epilepsy knowledge among PWE conclude that there are unmet needs for provision of better information and counselling in this patient group [6][7][8][9][10][11][12][13][14]. Nevertheless, a large study with over 6000 participants, concluded that European PWE are reasonably well informed about the disease, based on information retrieved by questionnaire via epilepsy support groups in 10 European countries [15].…”

Section: Introductionmentioning

confidence: 99%

“…Most studies assessing the objective knowledge of PWE about epilepsy use a questionnaire approach [7,9,10,14,15]. Relatively few studies have investigated the patients' perspective and evaluated whether the patients actually receive the information that they would like from healthcare providers, and whether they are satisfied with the information that they have received [5,6,11,12].…”

Section: Introductionmentioning

confidence: 99%

A call for better information about epilepsy: The patients’ perspective—An online survey

Henning

Alfstad

Nakken

et al. 2019

Seizure

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For people with epilepsy (PWE), insufficient information and knowledge about the disease might have a negative influence on outcome and lead to poorer quality of life. In contrast, good information may increase empowerment and reduce stigma. This study investigated whether Norwegian PWE want information about different epilepsy-related issues, whether they actually obtain the information that they seek, and the extent to which they are satisfied with the information they receive. Furthermore, we examined which factors that might have influenced the degree of specific information given to PWE. Methods: We invited PWE visiting the homepage of the Norwegian Epilepsy Association to complete a web-based questionnaire about their perspective on obtaining information about epilepsy-related issues. The survey was accessible for a four-month period during 2017. Results: More than 90% of respondents (n = 1182) wished general information about epilepsy, and over 75% wanted information on more specific issues, like epilepsy surgery. Depending on the subject, the proportion of respondents that reported receiving the information they wished varied from 6.6% to 91.9%. Obtaining information about epilepsy surgery and neurostimulation was significantly associated with male gender. Having tonic-clonic seizures was associated with obtaining information about the diagnosis, an organized lifestyle, regular sleep, and consumption of alcohol. Conclusions: This study provides insights on how PWE experience provision of relevant information about epilepsy. Although most PWE considered that they obtained information on general epilepsy issues, most PWE interested in information on non-medical treatments and psychosocial issues reported that they did not obtain the information they wanted.

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“…The task of providing comprehensive care to patients with epilepsy (PWE) is challenging. This is made more cumbersome by the poor patients’ and public understanding of what epilepsy is , the attending stigma with the consequent disruption of academic career, employment and family life , the lack of health policy that aids ‘bringing the PWE out of the shadows’, and provision of appropriate anti‐epileptic drugs and medical support for the affected individuals.…”

Section: Introductionmentioning

confidence: 99%

Risk factors for epilepsy in Nigerians - a cross-sectional case-control study

2013

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Patients’ knowledge about their disorder: Perspective of patients with epilepsy in a tertiary health facility in southwestern Nigeria

Cited by 14 publications

References 27 publications

Living with epilepsy in Lubumbashi (Democratic Republic of Congo): epidemiology, risk factors and treatment gap

Living with epilepsy in Lubumbashi (Democratic Republic of Congo): epidemiology, risk factors and treatment gap

A call for better information about epilepsy: The patients’ perspective—An online survey

Risk factors for epilepsy in Nigerians - a cross-sectional case-control study

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