Epileptic disorders : international epilepsy journal with videotape · 2026
Core outcome set for quality of life of family caregivers of adults with epilepsy: A Delphi consensus study.
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Boele Florien, Visser Famke, Zijlmans Maeike, Schuur Maaike, Peters Stephanie, Saridin Francis, van den Berg Lydia, Altinbas Aysun, Fronczek Rolf, Thijs Roland, Reijneveld Jaap C
Аннотация
OBJECTIVE: Epilepsy significantly affects daily functioning and health-related quality of life (HRQOL) of those living with the condition. Less is known about HRQOL of family caregivers of adults with epilepsy, yet the functioning of patients and caregivers is interlinked, and caregivers' unmet support needs are high. A consensus-based core outcome set for caregivers' HRQOL can guide more structured caregiver assessments and aid timely intervention.
METHODS: A three-round Delphi study was conducted to determine outcomes most important for family caregivers' HRQOL. Three stakeholder groups were recruited: experts-by-experience (caregivers/adults with epilepsy), healthcare professionals, and researchers. Across two survey rounds, participants rated outcomes for relevance, feasibility, and amenability to change. A predefined consensus threshold (≥80% agreement on relevance) guided outcome selection. In round three, participants prioritized three relevant outcomes per HRQOL domain. The resulting preliminary core outcome set was reviewed by a second stakeholder panel for scope, overlap, and feasibility before finalizing.
RESULTS: Thirty-four experts-by-experience, healthcare professionals, and researchers from 10 countries participated. In rounds 1 (N = 34) and 2 (N = 32), 41 outcomes reached the ≥80% relevance threshold and were retained. In round 3 (N = 30), participants prioritized 18 outcomes. After review by the second panel (N = 25), the final core outcome set includes caregivers' physical functioning (general health, sleep, fatigue), emotional functioning (emotional (in)stability, seizure worry, overwhelm, resilience), social functioning (personal relationships, family relationships, social stigma), spiritual/religious functioning (hope, purpose/meaning), tasks/responsibilities (understanding diagnosis and treatment, coping with behavior changes), and self-care, respite, and financial security. We recommend outcome measures prioritized for good psychometric properties, language availability, and low burden of administration to facilitate caregiver assessments.
SIGNIFICANCE: This international Delphi consensus study established 18 core outcomes for HRQOL of caregivers of adults with epilepsy. Structured assessment of the core outcome set using validated tools can support timely detection of and intervention to alleviate HRQOL issues in caregivers.
METHODS: A three-round Delphi study was conducted to determine outcomes most important for family caregivers' HRQOL. Three stakeholder groups were recruited: experts-by-experience (caregivers/adults with epilepsy), healthcare professionals, and researchers. Across two survey rounds, participants rated outcomes for relevance, feasibility, and amenability to change. A predefined consensus threshold (≥80% agreement on relevance) guided outcome selection. In round three, participants prioritized three relevant outcomes per HRQOL domain. The resulting preliminary core outcome set was reviewed by a second stakeholder panel for scope, overlap, and feasibility before finalizing.
RESULTS: Thirty-four experts-by-experience, healthcare professionals, and researchers from 10 countries participated. In rounds 1 (N = 34) and 2 (N = 32), 41 outcomes reached the ≥80% relevance threshold and were retained. In round 3 (N = 30), participants prioritized 18 outcomes. After review by the second panel (N = 25), the final core outcome set includes caregivers' physical functioning (general health, sleep, fatigue), emotional functioning (emotional (in)stability, seizure worry, overwhelm, resilience), social functioning (personal relationships, family relationships, social stigma), spiritual/religious functioning (hope, purpose/meaning), tasks/responsibilities (understanding diagnosis and treatment, coping with behavior changes), and self-care, respite, and financial security. We recommend outcome measures prioritized for good psychometric properties, language availability, and low burden of administration to facilitate caregiver assessments.
SIGNIFICANCE: This international Delphi consensus study established 18 core outcomes for HRQOL of caregivers of adults with epilepsy. Structured assessment of the core outcome set using validated tools can support timely detection of and intervention to alleviate HRQOL issues in caregivers.