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
Data files
Mar 10, 2026 version files 54.01 KB
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EDQ_Women_Time_Points_1_2.xlsx
46.42 KB
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README.md
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Abstract
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.
Dataset DOI: 10.5061/dryad.tht76hfdd
Description of the data and file structure
We aimed to assess the Episodic Disability Questionnaire (EDQ) for its ability to measure disability experienced by women living with HIV in the UK, specifically internal consistency, test-retest reliability, precision of measurement, and construct validity. We also aimed to measure disability prevalence and report disability profiles among women living with HIV.
Files and variables
File: EDQ_Women_Time_Points_1_2.xlsx
Description: Data from the Episodic Disability Questionnaire (EDQ) Women study, representing time point 1 (sheet 1) and time point 2 (sheet 2).
Missing Values: 9999
Sheet One
- A: EDQ Physical domain Severity score [EDQ score range from 0-100]
- B: EDQ Physical domain Presence score
- C: EDQ Physical domain Episodic score
- D: EDQ Cognitive domain Severity score
- E: EDQ Cognitive domain Presence score
- F: EDQ Cognitive domain Episodic score
- G: EDQ Mental and Emotional domain Severity score
- H: EDQ Mental and Emotional domain Presence score
- I: EDQ Mental and Emotional domain Episodic score
- J: EDQ Uncertainty domain Severity score
- K: EDQ Uncertainty domain Presence score
- L: EDQ Uncertainty domain Episodic score
- M: EDQ Day-to-Day Activities domain Severity score
- N: EDQ Day-to-Day Activities domain Presence score
- O: EDQ Day-to-Day Activities domain Episodic score
- P: EDQ Social Inclusion domain Severity score
- Q: EDQ Social Inclusion domain Presence score
- R: EDQ Social Inclusion domain Episodic score
- S: EDQ Good or Bad Day question [good day; bad day]
- T: World Health Organization Disability Assessment Schedule (WHODAS) 12-item question 1; In the last 30 days, how much difficulty did you have in standing for long periods, such as 30 minutes? [WHODAS scores; none; mild; moderate; severe; extreme or cannot do]
- U: WHODAS 12-item question 2; In the last 30 days, how much difficulty did you have in taking care of your household responsibilities?
- V: WHODAS 12-item question 3; In the last 30 days, how much difficulty did you have in learning a new task, for example, learning how to get to a new place?
- W: WHODAS 12-item question 4; In the last 30 days, how much of a problem did you have joining in community activities (for example, festivities, religious or other activities) in the same way as anyone else can?
- X: WHODAS 12-item question 5; In the last 30 days, how much have you been emotionally affected by your health problems?
- Y: WHODAS 12-item question 6; In the last 30 days, how much difficulty did you have in concentrating on doing something for ten minutes?
- Z: WHODAS 12-item question 7; In the last 30 days, how much difficulty did you have in walking a long distance, such as a kilometre [or equivalent]?
- AA: WHODAS 12-item question 8; In the last 30 days, how much difficulty did you have in washing your whole body?
- AB: WHODAS 12-item question 9; In the last 30 days, how much difficulty did you have in getting dressed?
- AC: WHODAS 12-item question 10; In the last 30 days, how much difficulty did you have in dealing with people you do not know?
- AD: WHODAS 12-item question 11; In the last 30 days, how much difficulty did you have in maintaining a friendship?
- AE: WHODAS 12-item question 12; In the last 30 days, how much difficulty did you have in your day-to-day work?
- AF: Work and Social Adjustment Scale (WSAS) retirement status (9999 missing data represents item not ticked on questionnaire)
- AG: WSAS item 1; How much does your problem impair your ability to carry out this activity? - Because of my [problem], my ability to work is impaired. [WSAS scores; '0' means 'not at all impaired' and '8' means very severly]
- AH: WSAS item 2; How much does your problem impair your ability to carry out this activity? - Because of my [problem], my home management (cleaning, tidying, shopping, cooking, looking after home or children, paying bills) is impaired
- AI: WSAS item 3; How much does your problem impair your ability to carry out this activity? - Because of my [problem], my social leisure activities (with other people e.g., parties, bars, clubs, outings, visits, dating, home entertainment) are impaired
- AJ: WSAS item 4; How much does your problem impair your ability to carry out this activity? - Because of my [problem], my private leisure activities (done alone, such as reading, gardening, collecting, sewing, walking alone) are impaired
- AK: WSAS item 5; How much does your problem impair your ability to carry out this activity? - Because of my [problem], my ability to form and maintain close relationships with others, including those I live with, is impaired
- AL: EQ-5D-5L Mobility scale [EQ-5D-5L scores range 0-5; no problems (1), slight problems (2), moderate problems (3), severe problems (4), and extreme problems (5)]
- AM: EQ-5D-5L Self Care scale
- AN: EQ-5D-5L Daily Activities scale
- AO: EQ-5D-5L Pain scale
- AP: EQ-5D-5L Mental and Emotional scale
- AQ: ED-5D-5L Visual Annalogue Scale (VAS) [range 0-100]
- AR: Equality Act Disability Definition (EADD) question 1; Do you have any physical or mental health condition or illnesses lasting or expected to last 12 months or more? [yes; no]
- AS: EADD question 2; Do any of your conditions or illnesses reduce your ability to carry out day-to-day activities? [not at all; yes a little; yes a lot]
- AT: Health Status Now question; Please answer the following questions based on your health status at this present time. In general, would you say your health is [poor; fair; good; very good; excellent]
- AU: Health Comparison question; Compared to one year ago, how would you rate your health in general now? [much worse; somewhat worse; about the same; somewhat better, much better]
Sheet Two
- A: Time Point 2 Health Status Change question; Has your health status changed in the past week (since you completed the questionnaire a week ago)?
- B: EDQ Physical domain Severity score [EDQ score range from 0-100]
- C: EDQ Physical domain Presence score
- D: EDQ Physical domain Episodic score
- E: EDQ Cognitive domain Severity score
- F: EDQ Cognitive domain Presence score
- G: EDQ Cognitive domain Episodic score
- H: EDQ Mental and Emotional domain Severity score
- I: EDQ Mental and Emotional domain Presence score
- J: EDQ Mental and Emotional domain Episodic score
- K: EDQ Uncertainty domain Severity score
- L: EDQ Uncertainty domain Presence score
- M: EDQ Uncertainty domain Episodic score
- N: EDQ Day-to-Day Activities domain Severity score
- O: EDQ Day-to-Day Activities domain Presence score
- P: EDQ Day-to-Day Activities domain Episodic score
- Q: EDQ Social Inclusion domain Severity score
- R: EDQ Social Inclusion domain Presence score
- S: EDQ Social Inclusion domain Episodic score
- T: EDQ Good or Bad Day question [good day; bad day]
Human subjects data
Explicit consent from participants was received in writing to publish de-identified data in the public domain. Human subject data has been anonymised and prepared under legal and ethical guidelines. No direct identifiers are included in the data archived. Indirect identifiers have been removed from the data to protect anonymity.