In this study, we estimated the HRQOL score for People with Epilepsy (PWE) in Uganda who had been on AEDs for at least three months and also assessed the relative importance of the different HRQOL sub-scores and associated predictors. This study showed that the HRQOL mean score among the PWEs on AEDs in Uganda is low, at 58 (on 0 – 100 scale). This low HRQOL score implies that these PWEs have poor physical, psychological and mental functioning and poor emotional well-being. Compared to the HRQOL subscales scores reported among TB patients in Uganda in 2010, the PWEs have considerably lower HRQOL scores. Based on a study by Babikako et al., the social, physical and mental functioning average scores for TB patients in Uganda are estimated to be above 70. Similarly, the HIV patients in Uganda have above 80 average score for physical and social functioning and their mental functioning score (average) is above 65. Research in other countries has shown similarly low HRQOL among the PWEs as compared to patients with other chronic conditions[19–22]. In Italy and India, this was attributed to low esteem and stigma and impact of epilepsy on all dimensions of life.
Physical functioning and emotional well-being scores are the most affected HRQOL domains despite PWEs being on AEDs. This is likely because, despite reduced seizure frequency, many physical activities are usually restricted for fear of seizure occurrence. Further, over 60% of the patients could be classified as having stigma (possibly internal stigma) which is expected among PWEs as reported by Jacob. This explains the poor emotional well-being and highlights the fact that HRQOL of PWEs has not improved.
Social, mental and psychological functioning play a major role in contributing to the HRQOL in PWEs and other patients with chronic conditions. The low scores in this domain significantly depress the overall HRQOL. For patients who are on treatment, such as in this study, these domains are more important than seizure feature controls alone (side effects, nature of therapy and seizure frequency). This could be because even if seizure are controlled it cannot necessary improve the social limitations such as chances of marriage. Similarly, people who are stigmatized might not adhere with the AEDs therapy and hence might achieve limited seizure frequency control. Thus, low social functioning and low emotional-wellbeing are likely due to stigma arising from the public, and some family members’ lack of knowledge about epilepsy. This implies that without addressing these other dimensions of HRQOL, the full benefits from treatment with AEDs cannot be realized. In deed studies elsewhere have also shown that treatment with AEDs alone does not significantly improve the social and psychological functioning of PWEs.
Mental functioning can actually be depressed for patients on poly-therapy as seen in this study and in other studies elsewhere[7, 24, 25]. In other words, although clinical management of seizures also aims to reduce on AEDs’ side effects, it is evident that AEDs’ have an effect on mental functioning of some patients and can potentially depress their HRQOL. For example, in our study patients on poly-therapy reported significantly higher number of drug side effects, especially drowsiness, weakness and feeling sleepy immediately after drug taking. This is similar to study reported by Haag et al.. Often poly-therapy is associated with complex dosing regimens which might be bothersome. Secondly, patients on poly-therapy had lower seizure frequency but this was associated with lower mental functioning. Livanainen et al. in their study reported that the continuous administration of some AEDs highly controls seizures but was associated with memory lapse, motor disorientation and aggressive behavior. The implication of this is that a mere focus on seizure control is not entirely beneficial to the overall quality of life of the patient. Management of side effects related to mental functioning will be key to improving the HRQOL of the PWEs on AEDs in Uganda.
Being on AEDs improves HRQOL but the social and mental functioning domains become predominantly important for overall improvement of HRQOL. Low scores for social functioning could be partly attributed to “feelings” of stigma (using embarrassment as a proxy). It has been observed in many studies among PWEs that stigma could lead to psychopathology. Since most the respondents in this study reported embarrassment, it could explain why social functioning played a key role in low HRQOL scores.
The other characteristics of the respondents that impacted on their overall HRQOL positively included gender, marital status and education level. However these factors and seizure control features (seizure frequency reduction, AEDs side effects) only explained 37% variation in the overall HRQOL. This implies that other aspects of overall HRQOL (e.g. social, mental, psychological functioning, etc.) are more important to HRQOL once seizure frequency is moderate. Being young was not substantially associated with low HRQOL. Being married affords one social and psychological support and hence reduces on the negative impact of low scores of these aspects on overall HRQOL. This also highlights the fact that once psychologists and psychiatrists do not address the social, psychological and mental functioning of PWE, family members have to bear these burdens. Social support has been found to be important in many studies.
Similarly, education affords one chance to adjust emotions favorably and possibly handle stigma better. Other studies have also reported the positive effect of education. This means helping the children with epilepsy to get education can help to sustain their HRQOL positively.
The study recruited patients who were receiving treatment from the two referral hospitals in Kampala, the capital city. It could be that most of these patients hail from the urban and semi-urban centres where QOL might be better. In addition, because of their conditions, sometimes the PWEs could not understand the questions asked, necessitating use of a caretaker to interpret the questions for them and sometimes clarify on the patients’ responses. There is a possibility that the caretakers did not interpret the questions correctly which might yield a wrong response. However, all the caretakers were oriented on the meaning of the different questions and their comprehension of the questions was assessed. In addition, since the questions were administered in Luganda (the local language) or English – the official language in Uganda – it was possible for the Principal Investigator to correct the caretaker’s interpretation where the actual meaning was being missed by the caretaker.