Data from: 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 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. 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 (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). 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 was highest in the daily activities domain
(MDC95%: 6.10) and lowest in the 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. Conclusions: The 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.