Mielke J, Sebit M, Adamolekun B
Department of Medicine, University of Zimbabwe Medical School, Harare, Zimbabwe.
Seizure. 2000 Jun;9(4):259-64. doi: 10.1053/seiz.1999.0377.
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.
癫痫是导致心理社会残疾的常见原因，并且被认为对癫痫患者的社会功能有深远影响。在津巴布韦，发展中国家的经济优先事项（为残疾人提供社会和健康服务并非主要目标）与文化上对癫痫的认知（认为癫痫是非医学问题且令人恐惧，是一种耻辱）相结合，可能在这方面使癫痫患者（PWE）更加处于不利地位。为了评估癫痫患者的心理社会功能水平以及他们自身对其的认知，选取了三组人群：一家专门癫痫诊所的就诊者以及两个社区支持小组的成员。所有人都完成了一份简短的生活质量问卷，并增加了日常生活活动方面的内容。当时在场的照料者在抽样时也完成了相同的问卷。结果表明，抽样的38名癫痫患者及其照料者中，根据世界卫生组织功能、残疾和健康分类（ICF）中关于认知表现的客观评估部分进行评估，他们并不认为自己有足以干扰社会功能、工作表现或与他人关系的认知障碍。然而，一份改编后的日常生活活动问卷（ADLQ）显示，四分之三的照料者（以及三分之二的癫痫患者）认为功能有轻度到中度下降，特别是在解决日常问题和思维速度方面。四分之一的癫痫患者在与他人的关系上存在问题，略少于五分之一的癫痫患者报告有超过四个功能下降的方面。特别值得关注的是，25人（66%）报告性功能不适用，尽管其中只有4人属于没有性活动的年龄组（小于15岁）。此外，中心医院组三分之一的人报告在使用公共交通方面有困难，但社区支持小组的成员中没有人有此问题，这意味着当需要长途出行时，使用公共交通就会成为一个问题，并且癫痫患者会减少出行，但不一定将此视为一种限制。所选取的样本来自与总体癫痫患者相比可能包括更多残疾个体的群体，因为专门癫痫诊所的就诊者和支持小组的成员会自我选择症状更明显、更受关注的癫痫病例。因此，在这个项目中被认为在日常生活活动方面有困难的癫痫患者比例并不代表总体癫痫患者情况。我们研究的意义在于，首先，津巴布韦特定群体的癫痫患者非常需要关注心理社会能力；其次，某些特定领域，如性功能和交通使用，值得特别关注。一份更详细的神经心理学测试清单对于为该项目中使用的粗略筛查工具所选定的患者制定治疗策略将很有价值。未来一个重要的比较将是对农村社区癫痫患者的日常生活活动和心理社会功能进行调查，因为不确定农村社区的癫痫患者总体上比城市中的癫痫患者残疾程度更高还是更低。
