Burden assessment tools in epilepsy caregiving: A scoping review

Abstract

Background Informal caregivers of people with epilepsy (PWE) experience a substantial burden because of the chronic nature and unpredictability of seizures. Although several caregiver burden assessment tools are available to quantify this burden, little is known about which of these tools have been specifically validated for use in epilepsy caregiving across diverse global and socioeconomic settings. Aim To map and evaluate standardised tools used to assess caregiver burden in epilepsy. Methods Following PRISMA-ScR and PCC frameworks, PubMed, Embase, and PsycINFO were searched up to March 2026 for quantitative studies published in English. Data on tool characteristics, domains, and psychometric properties were extracted and synthetically analysed. Results Sixty studies conducted across 24 countries were identified, utilising 18 distinct tools. The generic Zarit Burden Interview (ZBI; 58.3 %) and Parenting Stress Index (PSI; 21.7 %) predominated. Reliability triangulation confirmed stable internal consistency for generic tools (α = 0.80–0.94) across translations. However, formal psychometric validation and advanced structural modelling (CFA/MI) were entirely absent. Domain mapping revealed that generic scales fail to capture epilepsy-specific distress, relying on broad stigma proxies and omitting nocturnal vigilance. Conversely, three paediatric epilepsy-specific tools (ESPBS, IPES, UW-CSS/UW-CBS) showed excellent reliability (α > 0.90), with the UW-CSS/UW-CBS incorporating "Benefit Scales" to track mastery. Conclusions While generic tools like the ZBI are reliable standards, epilepsy-specific tools provide more granular and contextually relevant assessments of the caregiver's lived reality. There is an urgent need to shift from literal translation to rigorous structural validation of tool reliability and validity, and to develop dedicated, epilepsy-specific instruments for adult populations.