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

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 | medRxiv /* */ /* */ <!-- <!-- /*! * yepnope1.5.4 * (c) WTFPL, GPLv2 */ (function(a,b,c){function d(a){return"[object Function]"==o.call(a)}function e(a){return"string"==typeof a}function f(){}function g(a){return!a||"loaded"==a||"complete"==a||"uninitialized"==a}function h(){var a=p.shift();q=1,a?a.t?m(function(){("c"==a.t?B.injectCss:B.injectJs)(a.s,0,a.a,a.x,a.e,1)},0):(a(),h()):q=0}function i(a,c,d,e,f,i,j){function k(b){if(!o&&g(l.readyState)&&(u.r=o=1,!q&&h(),l.onload=l.onreadystatechange=null,b)){"img"!=a&&m(function(){t.removeChild(l)},50);for(var d in y[c])y[c].hasOwnProperty(d)&&y[c][d].onload()}}var j=j||B.errorTimeout,l=b.createElement(a),o=0,r=0,u={t:d,s:c,e:f,a:i,x:j};1===y[c]&&(r=1,y[c]=[]),"object"==a?l.data=c:(l.src=c,l.type=a),l.width=l.height="0",l.onerror=l.onload=l.onreadystatechange=function(){k.call(this,r)},p.splice(e,0,u),"img"!=a&&(r||2===y[c]?(t.insertBefore(l,s?null:n),m(k,j)):y[c].push(l))}function j(a,b,c,d,f){return q=0,b=b||"j",e(a)?i("c"==b?v:u,a,b,this.i++,c,d,f):(p.splice(this.i++,0,a),1==p.length&&h()),this}function k(){var a=B;return a.loader={load:j,i:0},a}var l=b.documentElement,m=a.setTimeout,n=b.getElementsByTagName("script")[0],o={}.toString,p=[],q=0,r="MozAppearance"in l.style,s=r&&!!b.createRange().compareNode,t=s?l:n.parentNode,l=a.opera&&"[object Opera]"==o.call(a.opera),l=!!b.attachEvent&&!l,u=r?"object":l?"script":"img",v=l?"script":u,w=Array.isArray||function(a){return"[object Array]"==o.call(a)},x=[],y={},z={timeout:function(a,b){return b.length&&(a.timeout=b[0]),a}},A,B;B=function(a){function b(a){var a=a.split("!"),b=x.length,c=a.pop(),d=a.length,c={url:c,origUrl:c,prefixes:a},e,f,g;for(f=0;f<d;f++)g=a[f].split("="),(e=z[g.shift()])&&(c=e(c,g));for(f=0;f<b;f++)c=x[f](c);return c}function g(a,e,f,g,h){var i=b(a),j=i.autoCallback;i.url.split(".").pop().split("?").shift(),i.bypass||(e&&(e=d(e)?e:e[a]||e[g]||e[a.split("/").pop().split("?")[0]]),i.instead?i.instead(a,e,f,g,h):(y[i.url]?i.noexec=!0:y[i.url]=1,f.load(i.url,i.forceCSS||!i.forceJS&&"css"==i.url.split(".").pop().split("?").shift()?"c":c,i.noexec,i.attrs,i.timeout),(d(e)||d(j))&&f.load(function(){k(),e&&e(i.origUrl,h,g),j&&j(i.origUrl,h,g),y[i.url]=2})))}function h(a,b){function c(a,c){if(a){if(e(a))c||(j=function(){var a=[].slice.call(arguments);k.apply(this,a),l()}),g(a,j,b,0,h);else if(Object(a)===a)for(n in m=function(){var b=0,c;for(c in a)a.hasOwnProperty(c)&&b++;return b}(),a)a.hasOwnProperty(n)&&(!c&&!--m&&(d(j)?j=function(){var a=[].slice.call(arguments);k.apply(this,a),l()}:j[n]=function(a){return function(){var b=[].slice.call(arguments);a&&a.apply(this,b),l()}}(k[n])),g(a[n],j,b,n,h))}else!c&&l()}var h=!!a.test,i=a.load||a.both,j=a.callback||f,k=j,l=a.complete||f,m,n;c(h?a.yep:a.nope,!!i),i&&c(i)}var i,j,l=this.yepnope.loader;if(e(a))g(a,0,l,0);else if(w(a))for(i=0;i (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0];var j=d.createElement(s);var dl=l!='dataLayer'?'&l='+l:'';j.src='//www.googletagmanager.com/gtm.js?id='+i+dl;j.type='text/javascript';j.async=true;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-P4HH5NV'); Skip to main content Home About Submit ALERTS / RSS Search for this keyword Advanced Search 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 View ORCID Profile DA Brown Obe , View ORCID Profile S Tariq , View ORCID Profile M Boffito , View ORCID Profile D Asboe , View ORCID Profile A Milinkovic , View ORCID Profile N Nwokolo , View ORCID Profile C Flavell , View ORCID Profile S Strachan , View ORCID Profile L Avery , View ORCID Profile KK O’Brien , View ORCID Profile R Harding doi: https://doi.org/10.1101/2025.10.30.25339187 DA Brown Obe 1 Chelsea and Westminster Hospital NHS Foundation Trust , London, United Kingdom Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for DA Brown Obe S Tariq 2 University College London , London, United Kingdom 3 Central and North West London NHS Foundation Trust , London, United Kingdom Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for S Tariq M Boffito 1 Chelsea and Westminster Hospital NHS Foundation Trust , London, United Kingdom Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for M Boffito D Asboe 1 Chelsea and Westminster Hospital NHS Foundation Trust , London, United Kingdom Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for D Asboe A Milinkovic 1 Chelsea and Westminster Hospital NHS Foundation Trust , London, United Kingdom Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for A Milinkovic N Nwokolo 1 Chelsea and Westminster Hospital NHS Foundation Trust , London, United Kingdom Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for N Nwokolo C Flavell 4 James Cook University , Townsville, Queensland, Australia Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for C Flavell S Strachan 1 Chelsea and Westminster Hospital NHS Foundation Trust , London, United Kingdom 5 Sophia Forum , London, United Kingdom Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for S Strachan L Avery 6 University Health Network , Toronto, Canada 7 Dalla Lana School of Public Health, University of Toronto , Toronto, Canada Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for L Avery KK O’Brien 8 Department of Physical Therapy, Temerty Faculty of Medicine, University of Toronto , Toronto, Canada 9 Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto , Toronto, Canada 10 Rehabilitation Sciences Institute, University of Toronto , Toronto, Canada Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for KK O’Brien R Harding 11 Cicely Saunders Institute, Florence Nightingale Faculty of Nursing Midwifery and Palliative Care, King’s College London , London, United Kingdom Find this author on Google Scholar Find this author on PubMed Search for this author on this site ORCID record for R Harding Abstract Full Text Info/History Metrics Data/Code Preview PDF 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 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. 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. INTRODUCTION With access to effective antiretroviral therapy, people living with HIV are increasingly reaching older age in the United Kingdom (UK) and are more likely to experience multimorbidity and disability [ 1 - 3 ], presenting significant health-related challenges. Disability is defined by adults living with HIV as any physical, cognitive, mental-emotional symptoms, difficulties with day-to-day activities, challenges to social inclusion, and uncertainty about future health, that may persist or fluctuate on a daily basis or over the longer course of living with HIV [ 4 , 5 ]. Functioning and disability are important for monitoring the performance of health strategies in health systems [ 6 ]. Measuring disability is additionally important for determining the impact of health challenges, improving communication between providers and patients, and evaluating interventions [ 7 - 9 ]. The Episodic Disability Questionnaire (EDQ) is a generic 35-item patient-reported outcome measure of disability [ 10 ] based on a conceptual framework of episodic disability [ 4 , 11 ]. It is derived from the HIV-specific Short-Form HIV Disability Questionnaire (SF-HDQ) [ 12 ] and HIV Disability Questionnaire (HDQ) [ 13 ], which both possess validity, reliability, and sensibility for use among adults living with HIV in Canada, Ireland, the United States (US) and the UK [ 14 - 18 ]. The EDQ has demonstrated internal consistency, construct validity, and test–retest reliability, with limited precision when administered electronically across a sample comprised of primarily men (83%) living with HIV [ 10 ]. In the UK, people with disabilities experience inequities in education, employment, living standards, housing, well-being, loneliness, and are more commonly victims of crime than the general population [ 19 ]. Women are more likely to experience disability than men [ 19 - 21 ] and women living with HIV in the UK experience higher disability severity compared to men [ 3 ]. Considering the gendered dimensions of disability and the under-representation of women in HIV research [ 22 ], it is essential to evaluate the psychometric properties of disability measurement tools among women. We aimed to assess the 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. METHODS We conducted a cross-sectional repeated measurement study involving the administration of the EDQ and criterion measures with women living with HIV in England, UK. We followed the COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) guidelines for assessment and reporting of psychometric properties of the EDQ [ 23 ]. Study setting This study was conducted at ten NHS outpatient HIV clinical settings in three cities in England, UK. We received ethics approval from the London City & East Research Ethics Committee (REC reference: 22/PR/1483) and Health Research Authority (IRAS: 318781). This study was included in the NIHR CRN Portfolio (CPMS ID: 54554). Participants We recruited women living with HIV who had previously participated in the Positive Transitions Through the Menopause (PRIME) study, regardless of menopausal status [ 24 ]. Potential participants were eligible if they had participated in PRIME, and were therefore living with HIV, female sex, aged 45-60 years on entry to PRIME, and had provided consent to be contacted about future research. Exclusion criteria were the inability to give consent or complete questionnaires in English. Participants were recruited via their local clinical care team. Written informed consent was obtained from participants at the initial study information and consent page of the questionnaire administration. Data collection Between March 2023 to January 2024 we electronically administered the EDQ followed by three criterion measures (World Health Organization Disability Assessment Schedule (WHODAS 2.0) [ 25 ], EQ-5D-5L [ 26 ], and Work and Social Adjustment Scale (WSAS) [ 27 ]) and a demographic questionnaire using Qualtrics software ( https://www.qualtrics.com ). Participants completed the questionnaires in-person via a computer or tablet at the recruiting clinical site, or remotely via a link in an email or Short Message Service (SMS) text. One week later, we emailed participants with a link requesting them to complete the EDQ only. At this time, we asked whether participants had a major change in their health status since their last EDQ completion and if yes, to describe this change. Study authors did not have access to information that could identify individual participants during or after data collection. Questionnaires Episodic Disability Questionnaire The EDQ is a generic patient-reported outcome measure (PROM) comprising 35-items spanning six domains: i) physical (10 items); ii) cognitive (3 items); iii) mental-emotional (5 items), iv) uncertainty about future health (5 items), v) difficulties carrying out day-to-day activities (5 items), and vi) challenges to social inclusion (7 items) [ 10 ]. For each item, individuals indicate the extent they are experiencing a specific health-related challenge on the day of assessment using item-specific severity scales: 0-4 (32 items), 0-3 (1 item), and 0-2 (2 items). They also report whether each challenge fluctuated over the past week with a binary episodic score (yes/no). The presence score is derived by dichotomising severity as present (severity 1–4) or absent (severity of 0). Severity and presence domain scores are calculated using the Rasch analysis algorithm (score range: 0-100) [ 12 ]. Higher scores indicate greater presence, severity and episodic nature of disability. World Health Organization Disability Assessment Schedule The WHODAS 2.0 is a 12-item self-administered generic questionnaire of functioning and disability applicable across cultures in adult populations, and directly linked to the International Classification of Functioning, Disability and Health (ICF) [ 25 , 28 ]. The WHODAS 2.0 assesses difficulty in performing specific functions over the previous 30 days across six disability domains: i) cognition, ii) mobility, iii) self-care, iv) getting along, v) life activities and vi) participation. Individuals answer on a 5-point ordinal scale (range 0–4) with higher scores indicating increasing difficulty completing the task. In simple scoring, scores are summed to provide an answer out of 48, with higher scores suggesting greater disability [ 25 ]. Complex scoring (or item response theory-based scoring) weights individual item severity, providing a disability range from 0 (no disability) to 100 (total disability) [ 25 ]. The WHODAS possesses internal consistency, test–retest reliability, validity and cross-cultural applicability [ 28 , 29 ]. The WHODAS is validated in people with chronic diseases [ 30 ] and people living with HIV [ 31 ]. Categorisation thresholds have been developed to identify people living with HIV experiencing disability (score ≥2) [ 3 , 32 , 33 ], and any level of functional limitation (score ≥1) [ 34 , 35 ]. In the UK, scores ≥2 have been defined as “moderate” disability among people living with HIV [ 3 ]. EQ-5D-5L The EuroQOL five dimensions five-level questionnaire is a generic self-reported measure of health-related quality of life, comprising five dimensions: i) mobility; ii) self-care; iii) usual activities; iv) pain/discomfort; and v) anxiety/depression [ 26 , 36 ]. Each dimension has 5 levels: no problems, slight problems, moderate problems, severe problems, and extreme problems. The digits for the five dimensions can be combined into a 5-digit number that describes the patient’s health state, or represented by a single summary number known as the index value, with a range approximately −0.285 to 1.000 [ 26 , 37 ]. The EQ-5D-5L is an extensively used generic measure of health-related quality of life in HIV research and across different diseases worldwide [ 38 , 39 ]. Psychometric data support its use [ 40 ], and it has been used within national HIV reporting and the PRIME study [ 24 , 41 ]. Work and Social Adjustment Scale The WSAS is a generic measure of perceived impairment in work or social functioning resulting from a health problem [ 27 ]. The 5 items are scored on a ordinal scale from 0 (not at all) to 8 (very severe), to identify challenges in domains: i) work; ii) home management; iii) social leisure activities; iv) private leisure activities; and v) relationships with others. Scores range from 0 to 40, with lower scores indicating better adjustment. WSAS scores above 20 suggest severe functional impairment, scores between 10 and 20 suggest moderately severe and scores below 10 suggest mild [ 27 , 42 ]. The WSAS is a unidimensional scale, suggesting the scores cannot be compared across groups of different health conditions, with overall high internal consistency among people living with HIV [ 42 ] and used to assess functional impairment among people living with HIV and painful peripheral neuropathy [ 43 ]. Demographic Questionnaire The demographic questionnaire included 35 items comprised of demographic (eg: age, sex, gender, ethnicity), health (eg: time since HIV diagnosis, viral load, concurrent health conditions, menopause, and general health status), and social characteristics (eg: living arrangements, work status, social security or benefits), and the UK Equality Act Disability Definition (EADD) questions [ 44 , 45 ]. The EADD reflects legal definitions in the Equality Act 2010 and defines a person as disabled if they have a physical or mental impairment and that impairment has a substantial and long-term adverse effect on their ability to carry out day-to-day activities [ 46 ]. The classification questions making up the EADD are: (a) “ do you have any physical or mental health conditions or illnesses lasting or expecting to last 12-months or more? ”; (b) “ do any of your conditions of illnesses reduce your ability to carry out day-to-day activities? ”. A person is counted as disabled if they answer “ yes ” to both classification questions. The EADD has been used to define “severe” disability among people living with HIV in the UK [ 3 ]. Analysis We calculated median (interquartile ranges (IQR)) EDQ scores. Severity and presence domain scores were calculated using the Rasch analysis algorithm (score range: 0-100) [ 12 ]. Episodic domain scores included a simple sum transformed on a scale 0-100. Higher scores indicated greater presence, severity and episodic nature of disability. We calculated median WHODAS 2.0 domain scores, EQ-5D-5L scores and WSAS scores as per guidelines. For the demographic questionnaire, we calculated descriptive statistics including frequencies (%) for categorical variables and median and IQR for continuous variables. Analysis was conducted using R [@R-psych] version 4.4.0. Internal Consistency We calculated Cronbach’s alpha (severity domain) and Kuder-Richardson-20 (KR-20) (presence and episodic domains) for time 1 (T1) with 95% confidence intervals (CI) (≥0.7 acceptable) [ 47 ]. Test-Retest Reliability We calculated Intra Class Correlations (ICCs) with 95% CI using T1 and time 2 (T2) EDQ scores based on Shrout and Fleiss’ ICC2 (absolute agreement with random raters) (lower bound CI of > 0.7 acceptable) [ 47 ]. We calculated ICCs for the entire sample indicating no change in their health status. Our test–retest assessment focused on EDQ presence and severity scales, as the episodic scale refers to fluctuations in disability in the past week, and we did not expect consistency in this scale. Measurement Precision We calculated the Standardised Error of Measurement (SEM) using Wywrich criteria [ 48 ], where ρ ICC is the test-retest reliability. The Minimum Detectable Change (MDC) was calculated for 95% CI (MDC95%) using the method proposed by Haley [ 49 ], where ρ is the test-retest reliability ICC, 1 - α is the level of confidence, and is the standard deviation of the measure at T1. Construct Validity We examined correlations for 59 total a priori hypotheses: 6 primary and 53 secondary. Primary hypothesis theorised relationships between EDQ domains’ severity scores and WHODAS 2.0 total scores. Secondary hypothesis theorised relationships between EDQ and WHODAS, EQ-5D-5L, and WSAS criterion measure sub-scales, and known groups of participants completing EDQ “on a good day” and with ≥ 2 concurrent health conditions. We derived a priori hypotheses from earlier construct validity assessments of the EDQ [ 10 ]. Spearman correlation coefficients of |≥ 0.30|, |≥ 0.50| and |≥ 0.70| were defined as ‘weak’, ‘moderate’ and ‘strong’, respectively [ 50 ]. If the lower bound of the confidence interval for the Spearman correlation was greater than the pre-specified level, the criteria were considered to be met. Wilcoxon rank sum test for a test of difference in medians between the known groups was significant at a level of <0.05, for the criteria to be considered met. Construct validity was defined as ≥75% confirmed hypotheses [ 50 ]. Disability Prevalence We estimated disability prevalence frequencies (%) and 95% CI, representing a range of severity [ 51 ]. The threshold for experiencing “moderate” disability was defined as WHODAS scores ≥2, representing at least two mild/moderate or one moderate/severe limitation on WHODAS items [ 3 , 32 - 35 ]. The threshold for experiencing “severe” disability was defined as self-rating “yes” to both EADD classification questions [ 3 ]. Disability Profile We calculated the frequency (%) for WHODAS simple scores in response to all 12 items, presence of any functional limitation (score ≥1) per WHODAS domain, WHODAS total number of limitations, and WHODAS difficulty levels. For WHODAS simple and complex sum scores, we calculated mean (standard deviation (SD)) and median (IQR as 25 th -75 th percentile) to align with normative data and existing literature [ 3 , 52 , 53 ]. We calculated median, lower quartile (LQ) and upper quartile (UQ), and range for EDQ presence, severity, and episodic scores per EDQ domain. Sample Size To detect a weak correlation |r=0.30| between EDQ and criterion scores, with a power of 0.80 and alpha of 0.05 required 85 participants [ 54 ]. To account for questionnaires with missing responses, loss to follow-up at T2, and recruiting 25% eligible participants from each site, our targeted sample size was 104 women living with HIV. RESULTS One hundred and four participants completed the questionnaires at T1, of which 93 (89%) completed the EDQ at T2, a median 11 days (IQR 8-19) after T1. Of the 93 completing T2, 59 (63%) participants reported no change in health status and were included in the test-retest reliability assessment. Among the 59 included, 51 (86%) reported completing T1 and T2 questionnaires on a good day, and 8 (14%) reported a bad day for both T1 and T2. Participant Characteristics See Table 1 for characteristics of participants. All participants were female sex assigned at birth, median age 56 years (IQR 54-58), with a median duration of 23 years since HIV diagnosis (IQR 18-27). Most participants were of Black, Black British, Caribbean or African ethnicity n=67 (65%), taking anti-retroviral therapy n=102 (99%), had an undetectable viral load <200 copies/ml n=88 (98%), and were living with a median of 5 comorbidities (IQR 3-8), representing multi-morbidity (≥2 co-morbidities) n=89 (86%). View this table: View inline View popup Table 1: Participants’ demographic, health, and social characteristics Criterion Measures WHODAS “simple” sum scores were mean 12.6 out of 48 (SD; 11.9), median 9.0 (IQR; 2.0-22.2). WHODAS “complex” sum scores were mean 26.3 out of 100 (SD; 24.8), median 18.8 (IQR; 4.2-46.3). The EQ-5D-5L median index scores were 0.7 (IQR: 0.5-0.8). See Supplementary File Table S.1 for frequencies (%) for each ED-5D-5L domain/item. The WSAS scores were mean 9.9 out of 40 (SD;11.8), median 5 (IQR: 0-16). Internal Consistency The EDQ met criteria for internal consistency across domains in the presence, severity and episodic scales (ICC ≥0.7). Cronbach’s alpha for EDQ severity scores range from 0.83 (social domain) to 0.92 (daily activities domain), for EDQ presence scores ranged from 0.75 (uncertainty domain) to 0.90 (daily activities domain), and for EDQ episodic scores ranged from 0.70 (social domain) to 0.81 (daily activities domain) ( Table 2 ). Lower bound CIs were ≥0.7, except for the uncertainty domain (0.67) of the EDQ presence scale and social domain (0.61) of the EDQ episodic scale ( Table 2 ). View this table: View inline View popup Download powerpoint Table 2: Internal consistency for Episodic Disability Questionnaire (EDQ) domain scores (n=104 participants) Test-Retest Reliability Overall, the EDQ met criteria for test-retest reliability for EDQ severity domains with ICCs ranging from 0.70 (physical domain) to 0.91 (daily activities domain) and for EDQ presence domains ranging from 0.72 (physical domain) to 0.89 (daily activities domain) ( Table 3 ). Lower bound CIs were >0.7, except for the physical domain (0.53) of the EDQ severity scale and physical (0.57), cognitive (0.60) and uncertainty (0.63) domains of the EDQ presence scale ( Table 3 ). View this table: View inline View popup Download powerpoint Table 3: Test-retest reliability for the Episodic Disability Questionnaire (EDQ) domains for severity and presence scales (n=59) Precision The EDQ severity scale for each domain demonstrated the highest precision, whereby the MDC95% ranged from 6.10 (daily activities domain) to 11.52 (mental-emotional domain), followed by the presence scale, whereby MDC95% ranged from 12.84 (social inclusion domain) to 21.32 (cognitive domain). The episodic scale MDC95% ranged from 13.75 (social inclusion domain) to 27.58 (cognitive domain) ( Table 4 ). View this table: View inline View popup Download powerpoint Table 4: Minimum Detectable Change (MDC) for Episodic Disability Questionnaire (EDQ) scales (n=104 participants) Construct Validity Eighty percent (47/59) of all hypotheses were met, including all six primary hypotheses (100%) and 41/53 (77%) secondary hypotheses confirmed, supporting construct validity for use with women living with HIV in the UK [Supplementary File Table S.2]. Disability Prevalence The estimated prevalence of moderate disability was 79.81% (95%CI: 70.57, 86.79) with n=83 scoring ≥2 on WHODAS. The estimated prevalence of severe disability was 41.75% (95%CI: 32.24, 51.88) with n=43 self-rating “yes” to both EADD classification questions. Disability Profile The WHODAS simple scores in response to all 12 items are shown in Supplementary File Table S.3. Frequency of any functional limitation (score ≥1) within each of the six WHODAS disability domains were; challenges to social participation (n=129, 62%), mobility challenges (n=122, 59%), challenges to life activities (n=116, 56%), cognitive health challenges (n=103, 50%), challenges getting along (n=90, 43%), and challenges with self-care (n=72, 35%). Any level of functional limitation (WHODAS score ≥1) was reported by n=90 (87%), whereby n = 9 (9%) scored one limitation, n=10 (10%) two limitations, n=7 (7%) three limitations, n=64 (62%) four or more limitations, and n=19 (18%) scoring all twelve limitations. Difficulty levels across all WHODAS items were “no difficulty’ n=616 (49%), “mild difficulty” n=203 (16%), “moderate difficulty” n=247 (20%), “severe difficulty” n=114 (9%), and “extreme difficulty/cannot do” n=68 (5%). The T1 EDQ domain scores are shown in Table 5 . The most severe, present, and episodic EDQ disability domains at T1 were “uncertainty”, “uncertainty”, and “physical symptoms and impairments” respectively, with n=84 (81%) reported completing the EDQ on a good day at T1. View this table: View inline View popup Table 5: Median Time 1 EDQ Domain Scores (n=104 participants) DISCUSSION The EDQ possesses internal consistency, test-retest reliability, and construct validity with varied precision among women living with HIV in the UK. This work goes beyond past disability measurement property assessments, which primarily included samples of men living with HIV [ 10 , 12 , 14 - 18 ]. These results are the first known to focus on the EDQ measurement properties with women. The EDQ presence, severity and episodic scales possessed internal consistency with all lower bound CIs of Cronbach’s alphas >0.70, except the uncertainty domain in the EDQ presence scale (0.67) and social domain in the EDQ episodic scale (0.61), suggesting the domains are homogenous and collectively measure the broader construct of disability in women living with HIV in the UK. This aligns with internal consistency assessment of the EDQ in Canada, Ireland, the UK and the US, whereby Cronbach’s alphas ranged from 0.72-0.91 [ 10 ]. Construct validity was supported, with 80% of overall a priori hypotheses fulfilled, including all primary and 77% secondary outcomes. This level of hypothesis confirmation, alongside a conservative approach to evaluating both primary and secondary criteria, reinforces the EDQ’s capacity to measure disability in alignment with previous literature [ 10 , 16 ]. Considering gendered dimensions of disability, these findings provide clinicians and researchers assurance of the EDQ’s ability to measure disability experienced by women living with HIV in the UK. Our assessment of test-retest reliability of the EDQ severity and presence scales demonstrated ICCs >0.70. Lower bound CIs for all ICCs were >0.70, except the physical (0.53) domain of the EDQ severity scale and physical (0.57), cognitive (0.60) and uncertainty (0.63) domains of the EDQ presence scale. This assessment, involving only two points in time, highlights the potential for daily fluctuations in disability, which may affect T2 EDQ score interpretations and potentially underestimate the EDQ’s test-retest reliability. Further longitudinal assessments with additional repeated measures over time could enhance the administration of this tool throughout routine HIV clinical care visits. It has been suggested that the EDQ may be well-suited for group-based or program evaluation purposes [ 10 ]. However, it is ultimately for clinicians to determine the acceptable level of error in clinical practice, depending on the intended purpose for EDQ administration (e.g. service referrals, eligibility for disability benefits [ 14 , 55 ]). The EDQ demonstrated higher precision within the severity domain among women living with HIV, underscoring its potential utility in accurately interpreting longitudinal changes in disability. The severity scale offers clinicians and researchers a reference point for discerning minimal yet significant changes in disability over time, surpassing day-to-day variability and measurement error. Our disability prevalence estimates among this sample of working-age women living with HIV in the UK demonstrate that 4 in 5 (79.81%) women experienced moderate disability, and approximately 2 in 5 (41.75%) experienced severe disability. The severe disability threshold (EADD) follows the core definition of disability in the Equality Act 2010, permitting comparison to the general population. Our disability estimates exceed proportions of disability among women and working-age adults in the UK general population, trending towards proportions among state-pension age adults [ 56 ]. They also exceed disability prevalence among a sample comprised primarily of men living with HIV in the UK [ 3 ]. Notably, 1 in 6 (18%) participants reported via the EADD that their conditions or illnesses limited their ability to carry out day-to-day activities, despite indicating no physical or mental health conditions expected to last 12-months or more. Given that all participants were living with HIV, this may represent underreporting of the severe disability prevalence and highlights potential limitations of duration-based criteria in capturing episodic or fluctuating disability experiences. This sample of women also had more concurrent health conditions (median 5) compared to previous estimates among men (median 2) [ 3 ], underscoring the gendered complexity of ageing with HIV and multimorbidity. These findings reinforce the importance of using disability measures that account for episodic health challenges, particularly among populations ageing with HIV. Our findings demonstrate that women living with HIV experience multidimensional and episodic disability in the context of antiretroviral therapy and viral suppression. This study also provides the first known disability profiles of women living with HIV in the UK, whereby the most severe and present disability domain was uncertainty or worry about future health. This aligns with previous research identifying uncertainty as the domain with the highest presence and severity scores [ 10 , 15 - 18 ], and indicates the importance of measuring uncertainty as a core component of disability experiences [ 57 ]. Consistent with UK data, physical symptoms and impairments were the most episodic experienced by women in this sample [ 10 , 16 ], emphasising the importance of screening, measuring and addressing these health challenges. Chronic pain of joints (45%) and soft tissue (42%) were the most frequent concurrent health conditions, with mobility impairments, social participation challenges and limitations with life activities being the most common WHODAS activity limitations. Musculoskeletal pain is common during perimenopause [ 58 ], highlighting the importance of detailed clinical history and awareness of the broad impacts of menopause transition. Furthermore, this sample of women reported higher rates of ≥1 WHODAS limitations than samples comprising mostly men, and higher rates of four or more activity limitations [ 3 ]. Physical symptoms and impairments can adversely affect daily functioning and reduce health-related quality of life [ 59 ]. Despite HIV care cascade successes in the UK [ 60 ], addressing the broader health, functioning, and well-being needs of women living with HIV requires disability-inclusive systems, interventions and multi-disciplinary care teams capable of providing comprehensive rehabilitation. Implications for practice and research The EDQ can be used clinically to describe disability experienced by women living with HIV, determine the impact of health challenges, improve communication between providers and patients, and evaluate the effect of interventions [ 10 ]. Clinicians and women living with HIV can use the EDQ to better understand which disability dimensions pose challenges and better direct personalised interventions and rehabilitation. The EDQ is also unique in its ability to measure and describe the episodic nature of health challenges experienced over time [ 10 , 61 ]. Our findings indicate women living with HIV in the UK are experiencing and self-reporting high levels of disability and multimorbidity. This warrants the inclusion of disability as a core outcome within national HIV surveillance, such as the UK Health Security Agency (UKHSA) annual reporting [ 1 ] and the Positive Voices survey [ 41 ], using validated tools to estimate prevalence and distribution of disability. Given that disability is associated with poorer health outcomes, fewer economic opportunities, and increased risk of poverty [ 62 ], the availability of valid and reliable disability data is essential for informing national strategies and action plans. Such data are critical for identifying priority areas and policy targets, guiding service planning and resource allocation, evaluating whether a population’s health needs are met, and assessing effective intervention coverage. Moreover, disability data are required for monitoring progress against the United Nations (UN) Sustainable Development Goals (SDGs) and for fulfilling obligations under the Convention on the Rights of Persons with Disabilities (CRPD) [ 63 - 66 ]. Strengths and Limitations We recruited ethnically diverse women living and ageing with HIV across the UK who had participated in the PRIME study, whereby the majority of participants were peri- or post-menopausal. Menopausal experiences of women in the UK are multifaceted, spanning physical, emotional, and social dimensions of health [ 67 ], and our results bring attention to the disability experiences of women living with HIV during the menopause. Our results may not be generalisable to all women living with HIV or transferable to low or middle-income countries. This assessment of EDQ properties involved electronic administration, and results may not be transferable to other modes of administration, such as paper-based administration. Women represent over a third of people receiving HIV care in the UK in 2024, with 48% aged 50 years and over [ 1 ]. Consequently, these data are representative of a large and growing population of women living with HIV in the UK, addressing chronic underrepresentation of women, racially minoritised people and older people in HIV research [ 22 , 68 ]. CONCLUSIONS The EDQ possesses internal consistency, test-retest reliability, and construct validity with varied precision among women living with HIV. It can support research, clinical practice, and national policy to measure, describe and report disability, evaluate interventions, and identify priority areas for healthcare planning and allocation of services for women living with HIV in the UK. Data Availability All relevant data are within the manuscript and its Supporting Information files. Acknowledgements We express our deepest gratitude to all the women living with HIV who participated in this research, sharing their experiences and providing valuable insights into various aspects of their health and functioning. We also thank the research team, including co-investigators and collaborators from ten NHS outpatient HIV clinical settings recruiting participants, and the Sophie Forum for their dedicated efforts in providing patient and public involvement, for this evaluation of disability among PRIME study participants, the UK’s largest sample of women living with HIV. Footnotes Email: darren.brown11{at}nhs.net , s.tariq{at}ucl.ac.uk , marta.boffito{at}nhs.net , david.asboe{at}nhs.net , ana.milinkoviv{at}nhs.net , nneka.nwokolo{at}nhs.net , carol.flavell{at}jcu.ed.au , sophie.strachan{at}nhs.net , lisa.avery{at}uhn.ca , kelly.obrien{at}utoronto.ca , richard.harding{at}kcl.ac.uk Funding This study is funded by a British HIV Association (BHIVA) research award (BHIVA/5020/2020/Brown). Kelly K. O’Brien is supported by a Canada Research Chair in Episodic Disability and Rehabilitation (CRC-2022-00510). REFERENCES 1. ↵ UK Health Security Agency . HIV testing, PrEP, new HIV diagnoses and care outcomes for people accessing HIV services: 2025 report . 2025 ; Available from: https://www.gov.uk/government/statistics/hiv-annual-data-tables/hiv-testing-prep-new-hiv-diagnoses-and-care-outcomes-for-people-accessing-hiv-services-2025-report . 2. Sukumaran , L. , et al. , Changes in multimorbidity burden over a 3–5 year period among people with HIV . Frontiers in Systems Biology , 2023 . Volume 3 - 2023. 3. ↵ Brown , D.A. , et al. , Prevalence, severity, and risk factors of disability among adults living with HIV accessing routine outpatient HIV care in London, United Kingdom (UK): A cross-sectional self-report study . PLOS ONE , 2022 . 17 ( 5 ): p. e0267271 . OpenUrl PubMed 4. ↵ O’Brien , K.K. , et al. , Exploring disability from the perspective of adults living with HIV/AIDS: Development of a conceptual framework . Health and Quality of Life Outcomes , 2008 . 6 ( 1 ): p. 76 . OpenUrl 5. ↵ O’Brien , K.K. , et al. , Putting episodic disability into context: a qualitative study exploring factors that influence disability experienced by adults living with HIV/AIDS . Journal of the International AIDS Society , 2009 . 12 ( 1 ): p. 30 – 30 . OpenUrl 6. ↵ Stucki , G. and J. Bickenbach , Functioning: the third health indicator in the health system and the key indicator for rehabilitation . Eur J Phys Rehabil Med , 2017 . 53 ( 1 ): p. 134 – 138 . OpenUrl CrossRef PubMed 7. ↵ Bristowe , K. , et al. , Towards person-centred care for people living with HIV: what core outcomes matter, and how might we assess them? A cross-national multi-centre qualitative study with key stakeholders . HIV Med , 2019 . 20 ( 8 ): p. 542 – 554 . OpenUrl CrossRef PubMed 8. Black , N. , et al. , Patient-reported outcomes: pathways to better health, better services, and better societies . Qual Life Res , 2016 . 25 ( 5 ): p. 1103 – 12 . OpenUrl CrossRef PubMed 9. ↵ Calvert , M. , et al. , Maximising the impact of patient reported outcome assessment for patients and society . Bmj , 2019 . 364 : p. k5267 . OpenUrl FREE Full Text 10. ↵ O’Brien , K.K. , et al. , Episodic disability questionnaire (EDQ) measurement properties among adults living with HIV in Canada, Ireland, United Kingdom, and United States . BMC Infectious Diseases , 2024 . 24 ( 1 ): p. 71 . OpenUrl PubMed 11. ↵ O’Brien , K.K. , et al. , Validation of the Episodic Disability Framework with adults living with HIV . Disabil Rehabil , 2014 . 36 ( 4 ): p. 319 – 29 . OpenUrl CrossRef PubMed 12. ↵ O’Brien , K.K. , et al. , Developing a short-form version of the HIV Disability Questionnaire (SF-HDQ) for use in clinical practice: a Rasch analysis . Health and Quality of Life Outcomes , 2021 . 19 ( 1 ): p. 6 . OpenUrl 13. ↵ O’Brien , K.K. , et al. , Sensibility assessment of the HIV Disability Questionnaire . Disability and Rehabilitation , 2013 . 35 ( 7 ): p. 566 – 577 . OpenUrl CrossRef PubMed 14. ↵ O’Brien , K.K. , et al. , Assessing the sensibility and utility of a short-form version of the HIV Disability Questionnaire in clinical practice settings in Canada, Ireland and the USA: a mixed methods study . BMJ Open , 2022 . 12 ( 9 ): p. e062008 . OpenUrl Abstract / FREE Full Text 15. ↵ O’Brien , K.K. , et al. , Reliability and validity of a new HIV-specific questionnaire with adults living with HIV in Canada and Ireland: the HIV Disability Questionnaire (HDQ) . Health and Quality of Life Outcomes , 2015 . 13 ( 1 ): p. 124 . OpenUrl 16. ↵ Brown , D.A. , et al. , Evaluation of the psychometric properties of the HIV Disability Questionnaire among adults living with HIV in the United Kingdom: A cross-sectional self-report measurement study . PLOS ONE , 2019 . 14 ( 7 ): p. e0213222 . OpenUrl PubMed 17. O’Brien , K.K. , et al. , Reliability and Validity of the HIV Disability Questionnaire (HDQ) with Adults Living with HIV in the United States . Journal of the International Association of Providers of AIDS Care (JIAPAC) , 2019 . 18 : p. 2325958219888461 . OpenUrl PubMed 18. ↵ Brien , K.K. , P. Solomon , and A.M. Bayoumi , Measuring disability experienced by adults living with HIV: assessing construct validity of the HIV Disability Questionnaire using confirmatory factor analysis . BMJ Open , 2014 . 4 ( 8 ): p. e005456 . OpenUrl Abstract / FREE Full Text 19. ↵ House of Commons Library . UK disability statistics: Prevalence and life experiences . 2024 20-Apr-2025]; Available from: https://researchbriefings.files.parliament.uk/documents/CBP-9602/CBP-9602.pdf . 20. Office for National Statistics . Disability by age, sex and deprivation, England and Wales: Census 2021 . 2023 20-Apr-2025]; Available from: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/disability/articles/disabilitybyagesexanddeprivationenglandandwales/census2021 . 21. ↵ Scotland’s Census . Scotland’s Census 2022 - Health, disability and unpaid care . 2024 20-Apr-2025]; Available from: https://www.scotlandscensus.gov.uk/2022-results/scotland-s-census-2022-health-disability-and-unpaid-care/ . 22. ↵ Curno , M.J. , et al. , A Systematic Review of the Inclusion (or Exclusion) of Women in HIV Research: From Clinical Studies of Antiretrovirals and Vaccines to Cure Strategies . JAIDS Journal of Acquired Immune Deficiency Syndromes , 2016 . 71 ( 2 ). 23. ↵ Gagnier , J.J. , et al. , COSMIN reporting guideline for studies on measurement properties of patient-reported outcome measures . Qual Life Res , 2021 . 30 ( 8 ): p. 2197 – 2218 . OpenUrl CrossRef PubMed 24. ↵ Tariq , S. , et al. , PRIME (Positive Transitions Through the Menopause) Study: a protocol for a mixed-methods study investigating the impact of the menopause on the health and well-being of women living with HIV in England . BMJ Open , 2019 . 9 ( 6 ): p. e025497 . OpenUrl Abstract / FREE Full Text 25. ↵ Ustun , T. , et al. Measuring health and disability: manual for WHO Disability Assessment Schedule (WHODAS 2.0) . 2010 [cited 2025 30-Mar-2025 ]; Available from: https://www.who.int/publications/i/item/measuring-health-and-disability-manual-for-who-disability-assessment-schedule-(-whodas-2.0) . 26. ↵ EuroQol Research Foundation . EQ-5D-5L User Guide . 2019 20-Apr-2025]; Available from: https://euroqol.org/wp-content/uploads/2023/11/EQ-5D-5LUserguide-23-07.pdf . 27. ↵ Mundt , J.C. , et al. , The Work and Social Adjustment Scale: a simple measure of impairment in functioning . British Journal of Psychiatry , 2002 . 180 ( 5 ): p. 461 – 464 . OpenUrl Abstract / FREE Full Text 28. ↵ Paton , M. and R. Lane , Clinimetrics: World Health Organization Disability Assessment Schedule 2.0 . Journal of Physiotherapy , 2020 . 66 ( 3 ): p. 199 . OpenUrl PubMed 29. ↵ Federici , S. , et al. , World Health Organization disability assessment schedule 2.0: An international systematic review . Disability and Rehabilitation , 2017 . 39 ( 23 ): p. 2347 – 2380 . OpenUrl CrossRef PubMed 30. ↵ Garin , O. , et al. , Validation of the “World Health Organization Disability Assessment Schedule, WHODAS-2” in patients with chronic diseases . Health and Quality of Life Outcomes , 2010 . 8 ( 1 ): p. 51 . OpenUrl 31. ↵ Barbosa , K.S.S. , et al. , Validation of the Brazilian version of the World Health Organization Disability Assessment Schedule 2.0 for individuals with HIV/AIDS . Cien Saude Colet , 2020 . 25 ( 3 ): p. 837 – 844 . OpenUrl PubMed 32. ↵ Hanass-Hancock , J. , H. Myezwa , and B. Carpenter , Disability and Living with HIV: Baseline from a Cohort of People on Long Term ART in South Africa . PLOS ONE , 2015 . 10 ( 12 ): p. e0143936 . OpenUrl CrossRef PubMed 33. ↵ Myezwa , H. , et al. , Disability and health outcomes – from a cohort of people on long-term anti-retroviral therapy . SAHARA-J: Journal of Social Aspects of HIV/AIDS , 2018 . 15 ( 1 ): p. 50 – 59 . OpenUrl 34. ↵ Kietrys , D. , et al. , Functional Limitations and Disability in Persons Living with HIV in South Africa and United States: Similarities and Differences . Journal of the International Association of Providers of AIDS Care (JIAPAC) , 2019 . 18 : p. 2325958219850558 . OpenUrl PubMed 35. ↵ Kietrys , D.M. , et al. , Self-Reported Disability in Persons With HIV-Related Neuropathy Is Mediated by Pain Interference and Depression . Physical Therapy , 2020 . 100 ( 12 ): p. 2174 – 2185 . OpenUrl PubMed 36. ↵ Herdman , M. , et al. , Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L) . Quality of Life Research , 2011 . 20 ( 10 ): p. 1727 – 1736 . OpenUrl CrossRef PubMed Web of Science 37. ↵ Devlin , N.J. , et al. , Valuing health-related quality of life: An EQ-5D-5L value set for England . Health Economics , 2018 . 27 ( 1 ): p. 7 – 22 . OpenUrl CrossRef PubMed 38. ↵ Cooper , V. , et al. , Measuring quality of life among people living with HIV: a systematic review of reviews . Health and Quality of Life Outcomes , 2017 . 15 ( 1 ): p. 220 . OpenUrl 39. ↵ Zhou , T. , et al. , Health-Related Quality of Life in Patients With Different Diseases Measured With the EQ-5D-5L: A Systematic Review . Front Public Health , 2021 . 9 : p. 675523 . OpenUrl PubMed 40. ↵ Tran , B.X. , A. Ohinmaa , and L.T. Nguyen , Quality of life profile and psychometric properties of the EQ-5D-5L in HIV/AIDS patients . Health and Quality of Life Outcomes , 2012 . 10 ( 1 ): p. 132 . OpenUrl 41. ↵ UK Health Security Agency . Positive Voices 2022: survey report . 2024 21-Apr-2025]; Available from: https://www.gov.uk/government/publications/hiv-positive-voices-survey/positive-voices-2022-survey-report . 42. ↵ Thandi , G. , N.T. Fear , and T. Chalder , A comparison of the Work and Social Adjustment Scale (WSAS) across different patient populations using Rasch analysis and exploratory factor analysis . Journal of Psychosomatic Research , 2017 . 92 : p. 45 – 48 . OpenUrl PubMed 43. ↵ Scott , W. , et al. , Feasibility randomized-controlled trial of online acceptance and commitment therapy for painful peripheral neuropathy in people living with HIV: The OPEN study . European Journal of Pain , 2021 . 25 ( 7 ): p. 1493 – 1507 . OpenUrl PubMed 44. ↵ UK Government . Definition of disability under the Equality Act 2010 . [cited 2025 30-Mar-2025 ]; Available from: https://www.gov.uk/definition-of-disability-under-equality-act-2010 . 45. ↵ Government Analysis Function . Measuring disability for the Equality Act 2010 harmonisation guidance . 2019 ; Available from: https://analysisfunction.civilservice.gov.uk/policy-store/measuring-disability-for-the-equality-act-2010/ . 46. ↵ Office for National Statistics . Measuring disability: comparing approaches . 2019 ; Available from: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/disability/articles/measuringdisabilitycomparingapproaches/2019-08-06 . 47. ↵ Nunnally , J. and I. Bernstein , Psychometric Theory . 2025/01/01 ed. Psychometrika. Vol. 60 . 1995 : Cambridge University Press & Assessment . 313 – 315 . OpenUrl 48. ↵ Wyrwich , K.W. , et al. , Linking Clinical Relevance and Statistical significance in Evaluating Intra-Individual Changes in Health-Related Quality of Life . Medical Care , 1999 . 37 ( 5 ). 49. ↵ Haley , S.M. and M.A. Fragala-Pinkham , Interpreting Change Scores of Tests and Measures Used in Physical Therapy . Physical Therapy , 2006 . 86 ( 5 ): p. 735 – 743 . OpenUrl Abstract / FREE Full Text 50. ↵ Terwee , C.B. , et al. , Quality criteria were proposed for measurement properties of health status questionnaires . Journal of Clinical Epidemiology , 2007 . 60 ( 1 ): p. 34 – 42 . OpenUrl CrossRef PubMed Web of Science 51. ↵ Mont , D. Measuring disability prevalence . 2007 [cited 2025 30-Mar-2025 ]; Available from: https://documents1.worldbank.org/curated/en/578731468323969519/pdf/395080Disability0SP070601PUBLIC1.pdf . 52. ↵ Andrews , G. , et al. , Normative Data for the 12 Item WHO Disability Assessment Schedule 2.0 . PLOS ONE , 2009 . 4 ( 12 ): p. e8343 . OpenUrl CrossRef PubMed 53. ↵ Hanass-Hancock , J. , et al. , Determinants of livelihood in the era of widespread access to ART . AIDS Care , 2017 . 29 ( 1 ): p. 32 – 39 . OpenUrl PubMed 54. ↵ Browner , W.S. , et al. , Designing clinical research . 2022 : Lippincott Williams & Wilkins . 55. ↵ O’Brien , K.K. , et al. , Short-Form HIV Disability Questionnaire Sensibility, Utility, and Implementation Considerations in Community-Based Settings: A Mixed Methods Study . Journal of the International Association of Providers of AIDS Care (JIAPAC) , 2023 . 22 : p. 23259582231210801 . OpenUrl 56. ↵ Pensions , D.f.W. Family Resources Survey: financial year 2022 to 2023 updated 27 March 2025 . 2025 ; Available from: https://www.gov.uk/government/statistics/family-resources-survey-financial-year-2022-to-2023/family-resources-survey-financial-year-2022-to-2023 . 57. ↵ O’Brien , K.K. , et al. , Characterizing the disability experience among adults living with HIV: a structural equation model using the HIV disability questionnaire (HDQ) within the HIV, health and rehabilitation survey . BMC Infectious Diseases , 2019 . 19 ( 1 ): p. 594 . OpenUrl CrossRef PubMed 58. ↵ Lu , C.-b. , et al. , Musculoskeletal Pain during the Menopausal Transition: A Systematic Review and Meta-Analysis . Neural Plasticity , 2020 . 2020 ( 1 ): p. 8842110 . OpenUrl CrossRef PubMed 59. ↵ Kelly , C. , et al. , Health-related quality of life of adults with HIV in England, Wales, and Scotland: findings from Positive Voices 2022 , in British HIV Association (BHIVA) Spring Conference . 2024 , HIV Medicine : Birmingham . p. 21 – 111 . 60. ↵ UK Health Security Agency . HIV Action Plan monitoring and evaluation framework 2023 report . 2025 ; Available from: https://www.gov.uk/government/publications/hiv-monitoring-and-evaluation-framework/hiv-action-plan-monitoring-and-evaluation-framework-2023-report . 61. ↵ Su , T.-T. , et al. , Trajectories of disability and influence of contextual factors among adults aging with HIV: insights from a community-based longitudinal study in Toronto, Canada . medRxiv , 2024 : p. 2024.08.16.24312091. 62. ↵ World Health Organization . Global report on health equity for persons with disabilities . 2022 ; Available from: https://www.who.int/publications/i/item/9789240063600 . 63. ↵ Sabariego , C. , et al. , Estimating disability prevalence in population surveys: an exploratory study using national surveys carried out in Ethiopia, Uganda, Tanzania and USA . Disability and Rehabilitation , 2025 . 47 ( 16 ): p. 4212 – 4219 . OpenUrl PubMed 64. Hendriks , A. , UN Convention on the Rights of Persons with Disabilities . European journal of health law , 2007 . 14 ( 3 ): p. 273 – 298 . OpenUrl PubMed 65. Weiland , S. , et al. , The 2030 agenda for sustainable development: transformative change through the sustainable development goals? 2021 , Cogitatio Press . p. 90 – 95 . 66. ↵ De Groote , W. , et al. , Development of a World Health Organization indicator and corresponding questions to measure effective coverage of rehabilitation . eClinicalMedicine , 2025 . 85 . 67. ↵ Anto , A. , et al. , Women’s Menopausal Experiences in the UK: A Systemic Literature Review of Qualitative Studies . Health Expectations , 2025 . 28 ( 1 ): p. e70167 . OpenUrl CrossRef PubMed 68. ↵ Castillo-Mancilla , J.R. , et al. , Minorities Remain Underrepresented in HIV/AIDS Research Despite Access to Clinical Trials . HIV Clinical Trials , 2014 . 15 ( 1 ): p. 14 – 26 . OpenUrl CrossRef PubMed View the discussion thread. Back to top Previous Next Posted November 02, 2025. 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