Epilepsy-specific quality-of-life questionnaires and social stigma scales in adults with epilepsy: a methodological review

Abstract

Introduction. Adult epilepsy generates a burden that extends beyond seizure counts and includes adverse treatment effects, role restriction, emotional distress, and the social devaluation attached to the diagnosis. The methodological problem is not the absence of patient-reported measures, but the heterogeneity with which disease-specific quality-of-life and stigma instruments are selected, interpreted, and combined in adult studies. Materials and methods. A structured narrative methodological review was conducted using PubMed/MEDLINE, Scopus, Web of Science, Embase, Cochrane Library, and the institutional repository of the Nicolae Testemițanu State University of Medicine and Pharmacy. The synthesis focused on the Quality of Life in Epilepsy Inventory family, especially the 89-, 31-, 31-P, and 10-item forms, the adolescent 48-item comparator, and adult epilepsy stigma measures such as the Epilepsy Stigma Scale (ESS) variants, the Stigma Scale of Epilepsy (SSE), and the Epilepsy Self-Stigma Scale (ESSS). Special attention was given to publications from the Republic of Moldova and Romania because regional evidence is sparse but clinically relevant. Results. QOLIE-31 emerged as the most defensible adult comparative instrument because it balances breadth, feasibility, and international comparability. QOLIE-31-P was particularly useful for patient-centred and real-world designs, while QOLIE-10 served primarily as a screening instrument and QOLIE-89 retained value for comprehensive psychometric work. The 48-item version was methodologically informative but remained adolescent-oriented rather than a primary adult endpoint. Across the stigma literature, ESS, SSE, and ESSS were clearly not interchangeable because they capture overlapping but distinct constructs, including perceived stigma, felt stigma, and internalized self-stigma. Conclusions. The working hypothesis was supported across international, regional, and Moldovan sources: the greater the clinical and psychosocial severity of epilepsy, the lower the epilepsy-specific quality of life. Seizure frequency, uncontrolled or drug-resistant epilepsy, polytherapy, adverse medication effects, depression, anxiety, and stigma were the most recurrent determinants of lower scores. For adult studies intended for Moldovan settings and the MJHS submission, QOLIE-31 or QOLIE-31-P, combined with one clearly defined stigma scale and a standardized set of severity variables, offers the strongest methodological balance.