Evaluation of the psychometric properties of the Episodic Disability Questionnaire (EDQ) among women living with HIV in the United Kingdom: a self-reported repeated measure study

BackgroundDisability is an increasingly common health outcome as women age with HIV and multimorbidity. The Episodic Disability Questionnaire (EDQ) measures the presence, severity, and episodic nature of disability across six domains. We evaluated EDQ properties among women living with HIV in the United Kingdom. MethodsParticipants in the Positive Transitions Through the Menopause (PRIME) study completed the EDQ at two timepoints (1 week apart), criterion measures (WHODAS 2.0, EQ-5D-5L, Work and Social Adjustment Scale), and a demographic questionnaire. We evaluated internal consistency (Cronbach alpha [≥]0.7), test-retest reliability (ICC >0.7), measurement precision (Minimum Detectable Change (MDC) 95%), and construct validity ([≥]75% a priori hypotheses met). Disability prevalence was assessed using WHODAS 2.0 (moderate threshold) and Equality Act Disability Definition (severe threshold). ResultsOf 104 participants (median age 56 years, 65% Black ethnicity), 93 (89%) completed the EDQ twice. Median duration since HIV diagnosis was 23 years; 98% had undetectable viral loads and 86% reported multimorbidity. Cronbachs alpha ranged from 0.83 (social domain) to 0.92 (daily activities domain). ICC ranged from 0.70 (physical domain) to 0.91 (daily activities domain). Precision was highest in daily activities domain (MDC95%: 6.10) and lowest in mental-emotional domain (MDC95%: 11.52). Eighty percent (n=47/59) of construct validity hypotheses were met. Disability prevalence was 79.81% (95%CI 70.57, 86.79) moderate and 41.75% (32.24, 51.88) severe disability. ConclusionsThe EDQ possesses internal consistency, test-retest reliability, and construct validity with varied precision among women living with HIV. Results can support research and clinical practice to measure disability and evaluate interventions.