Commentary

The quality of life (QOL) is a very complex concept and it is raised in many different fields from economics and policy to medicine. The World Health Organization (WHO) defines QOL as an individual's “perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns.”[1] In public health and in medicine, the concept of health-related quality of life (HRQOL) refers to a person or group's perceived physical and mental health over time. Over the past three decades, the QOL research gradually contributed a significant new dimension to medical science by entitling the patient to provide data aiming to assess the overall impact of diseases and medical treatments from her/his own point of view. Thus, the patient has become a partner in the treatment and assessment of overall effects of disesae on her/his life.

Assessments of HRQOL may be done either with generic scales (used for comparisons of health status between different diseases and applicable to virtually all people) or with disease-specific scales (used for those individuals with particular diseases or conditions). One of the most widely used generic HRQOL scale is Short Form Health Survey (SF-36).[2] Both approaches have advantages and drawbacks. The use of a generic scale, such as SF-36, can enable direct comparison of HRQOL across various populations, e.g., groups suffering from different diseases with a general reference group of healthy individuals.[3] However, it can miss some disease-specific problems, in particular specific transportation and employment restrictions imposed on daily living of People with epilepsy (PWE). The combination of a disease-specific scale with a generic one can provide the benefits of both instruments.

Contemporary HRQOL studies in people with epilepsy (PWE) should preferably employ scales with known psychometric properties (reliability, validity, and responsiveness), widespread in use (used by more than one author, and used in more than five studies), and assessing epilepsy-specific factors, in particular characterstics of seizures and the effects of antiepileptic treatment. The authors of the study published in this issue[4] of the Journal of Neurosciences in Rural Practice, appropriately choosed the QOLIE-89,[5] which fulfils all requested criteria. Since the QOLIE-89 was originally validated in English language, the authors of the present study[4] performed the cross-cultural validation by translating 89-item questionnaire to Kannada and Marathi, the two most common languages used in their working region, then back-translating and validating the questionnaire by testing it in a pilot study. Subsequently, discriminative validity of the QOLIE-89 questionnaire was demonstrated in a sample of 60 adult PWE wherein the authors found significantly impaired HRQOL in PWE, with increased impairment in those with simple partial seizures, with longer duration of the epilepsy, and with a recent seizure. The relation of simple partial seizures to a worse HRQOL was explained by the fact that patients with localization related epilepsy had more number of seizures than other types of seizure. It is possible that PWE with several seizure types might have a higher seizure severity. In our study, the HRQOL in PWE is significantly correlated with seizure severity.[6]

Regarding the demographic factors, the finding of a lower HRQOL in female patients and married people[4] was not reported in all published studies of HRQOL in various countries.[36] Equally, older age was not correlated with a worse HRQOL,[4] contrary to the studies from other countries.[35–6] Determinants of HRQOL in PWE are undoubtedly multiple, related not only to epilepsy, but also to many demographic, psychosocial, economic, and cultural factors, as well as to medical and psychiatric comorbidities.[35–8] As stated in the present study,[4] it seems that demographic factors are culture related. Further studies on HRQOL in larger samples of PWE should should discern the interconnections of various factors influencing on HRQOL. An important area of study is to prove the responsiveness of HRQOL scales to clinical changes, in particular the use of medication with a better efficacy and tolerability or after epilepsy surgery.[8] It is hoped that HRQOL studies should be helpful to attain one of the main treatment goal in PWE, namely to maximize quality of life by using comprehensive treatment that would improve the QOL beyond seizure control.