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

BACKGROUND: Disability is increasingly experienced by women ageing 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. METHODS: Participants 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, test-retest reliability, measurement precision (Minimum Detectable Change (MDC) 95%), and construct validity. We assessed disability prevalence using WHODAS 2.0 (moderate threshold) and Equality Act Disability Definition (severe threshold). RESULTS: Of 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. Cronbach's 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 varied, highest in daily activities (MDC95%: 6.10) and lowest in mental-emotional domains (MDC95%: 11.52). The EDQ met 80% (n = 47/59) of construct validity hypotheses. Disability prevalence was 79.81% (95%CI 70.57, 86.79) moderate and 41.75% (32.24, 51.88) severe. CONCLUSIONS: The EDQ possesses internal consistency, test-retest reliability, and construct validity with varied precision among women living with HIV. Disability prevalence in this sample was higher than in the general population. The EDQ offers value for research, clinical practice, and national policy by enabling measurement and description of disability, supporting intervention evaluation, and informing priority-setting and healthcare service planning for women living with HIV in the UK.