The impact of epilepsy on the quality of life of people with epilepsy in Zimbabwe: a pilot study

Abstract

Epilepsy is a common cause of psychosocial disability and has been perceived to have a profound impact on the social functioning of individuals with epilepsy. In Zimbabwe a combination of developing world economic priorities (with provision of social and health services for disabled people not a major goal) and culturally mediated perceptions of epilepsy as a non-medical and feared stigma may further disadvantage people with epilepsy (PWE) in this respect. In order to assess both the level of psychosocial functioning of individuals with epilepsy and their own perception of it, three groups of people were sampled: attenders at a specialized epilepsy clinic and members of two community-based support groups. All completed a brief quality-of-life questionnaire with activities of daily living added. Those carers present completed the same questionnaire at the time of sampling. The results indicated that 36 of 38 people with epilepsy sampled, and their carers, did not perceive themselves to have sufficient cognitive impairment to interfere with social functioning, work performance or relationships with other as assessed by a subsection of the WHO SIDAM (objective evaluation of cognitive performance) interview. However, an adapted activities of daily Living Questionnaire (ADLQ) showed that three-quarters of carers (and two-thirds of PWE) felt that functioning was mildly to moderately reduced, particularly in the areas of solving daily problems and speed of thinking. One-quarter of PWE experienced problems with relationships to others, just less than one-fifth of PWE reported more than four areas of reduced functioning. Of special interest was the fact that 25 (66%) reported sexual functioning as not applicable, although only four of these were of an age group which is not sexually active (less than 15 years old). In addition one-third of the central Hospital Group reported difficulties with using public transport, but none of the Community Support Group members, implying that the use of Public transport becomes an issue when it is necessary to travel long distances and that PWE curtail their travel but do not necessarily view this as a restriction. The samples chosen were from groups which, compared with PWE as a whole, are likely to include more disabled individuals, because attenders at a specialized epilepsy clinic and members of support groups self-select for more symptomatic epilepsy and a visibility. Therefore the proportion of PWE perceived to have difficulties with ADL in this project is not representative for PWE as a whole. The implications of our study are firstly that there is a significant need for selected groups of PWE in Zimbabwe to receive attention to psychosocial abilities and secondly that there are certain specific areas such as sexual functioning and the use of transport which deserve special attention. A much more detailed inventory of neuro-psychological tests will be of value to plan treatment strategies for those selected by the crude screening instruments used in this project. An important future comparison will be a survey of ADL and psychosocial functioning amongst PWE in rural communities, because it is uncertain whether PWE in rural communities are generally more or less disabled than those in the city.