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

Epilepsy is a common cause of psychosocial disability and has been perceive d to have a profound impact on the social functioning of individuals with e pilepsy. In Zimbabwe a combination of developing world economic priorities (with provision of social and health services for disabled people not a maj or goal) and culturally mediated perceptions of epilepsy as a non-medical a nd feared stigma may further disadvantage people with epilepsy (PWE) in thi s 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-li fe questionnaire with activities of daily living added. Those carers presen t completed the same questionnaire at the time of sampling. The results ind icated that 36 of 38 people with epilepsy sampled, and their carers, did no t perceive themselves to have sufficient cognitive impairment to interfere with social functioning, work performance or relationships with other as as sessed by a subsection of the WHO SIDAM (objective evaluation of cognitive performance) interview. However, an adapted activities of daily Living Ques tionnaire (ADLQ) showed that three-quarters of carers (and two-thirds of PW E) 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 functio ning. Of special interest was the fact that 25 (66%) reported sexual functi oning as not applicable, although only four of these were of an age group w hich is not sexually active (less than 15 years old). In addition one-third of the central Hospital Group reported difficulties with using public tran sport, but none of the Community Support Group members, implying that the u se 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 th is as a restriction. The samples chosen were from groups which, compared wi th PWE as a whole, are likely to include more disabled individuals, because attenders at a specialized epilepsy clinic and members of support groups s elf-select for more symptomatic epilepsy and a visibility. Therefore the pr oportion 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 sexua l functioning and the use of transport which deserve special attention. A m uch more detailed inventory of neuro-psychological tests will be of value t o plan treatment strategies for those selected by the crude screening instr uments used in this project. An important future comparison will be a surve y of ADL and psychosocial functioning amongst PWE in rural communities, bec ause it is uncertain whether PWE in rural communities are generally more or less disabled than those in the city. (C) 2000 BEA Trading Ltd.