| dc.description.abstract | Introduction: The International League Against Epilepsy (ILAE), and the International Bureau for Epilepsy (IBE), together with the World Health Organization (WHO) launched in June 1997 the global campaign against epilepsy (1). The major objective of this campaign is to bring epilepsy "out of the shadows" by improving the diagnosis, treatment, prevention and social acceptability of this worldwide disorder and especially in developing countries. It also aspires to eliminate barriers to a better quality of life with reduction of the treatment gap in those with the disease.
Objective: This study explores the subjective evaluation in a cultural, social environmental and even physical context of the perceived quality of life of people living with epilepsy (PLWE) in our nation. It does not provide a means of measuring in a detailed fashion, symptoms, diseases or conditions, but rather the effects of epilepsy, socio-demographic variables and health interventions on quality of life. It also aspires to make evidence-based recommendations with the aim of ultimately improving the quality of life of people with this prejudiced disease.
Methodology: The study design is a cross-sectional descriptive survey of a comparative nature with a sample size of 300 respondents, 150 PLWE and 150 controls, attending the neurology clinic at KNH in Nairobi, Kenya. It began in October 2006 and data was collected over a period of five months, using standardized World Health Organisation Quality of Life¬BREF26 (WHOQOL-BREF), seizure burden and characteristics, treatment profile, and socio¬demographic questionnaires. Comparison to the DSM IV - TR Global Assessment of Functioning (GAF) was done and cognitive impairment as per the MMSE applied as one of the exclusion criteria.
Results: The study population consisted of 300 subjects, 150 PLWE and 150 NCs accompanying them to the neurology clinic at KNH. In the sample there was no significant (p> 0.05) difference in age of the respondents, their religion, area of residence, household size, children had and gender between the two groups. They however differed significantly in other socio-demographic variables: the PLWE showed lower level of education (p< 0.001), lower annual income (p <0.001), lower MMSE scores (p <0.001), with most of them unemployed (p< 0.001), having unskilled employment (p= 0.041) or not married (p< 0.001), as compared with the NCs. The mean QOL among PLWE(49.90%) at KNH was significantly(p<O.OI) lower than that of the NCs(77.60%) accompanying them and significantly impaired as compared to the hypothesized mean of 75±-2.5%.Factors significantly associated with impairment of QOL among PLWE were lower level of education(p< 0.001), higher seizure burden(p< 0.001), lower annual income(p= 0.007), unemployment(p= 0.004), unskilled employment(p< 0.001), living in a rural residence(p= 0.009), those citing financial difficulties as the reason for non-compliance(p= 0.037) and in those blaming their illness(epilepsy) as the cause oftheir unemployment(p< 0.001).
Conclusions and Recommendations: The mean QOL among PLWE (49.90%) attending the neurology clinic at KNH was significantly lower than that of the NCs accompanying them and significantly impaired as per the hypothesized mean of 75±2.5%.It was therefore recommended that there be established a comprehensive epilepsy management strategy program with the objective of empowering the PLWE through socio-occupational skills training and other alternative forms of training to improve their socio-economic needs. Additionally early psycho-education, de-stigmatization through mass-media, advocacy of routine assessment using the GAF scale, improving their classroom environment, as well as facilitation of further studies among those with chronic disabling illness, including epilepsy, was recommended. | en_US |
